Re: Methotrexate reactions--rant

[Guest guest]

Been out of town staying away from computer for most of the time but just read this. Whenever I have a patient that has cramps the very first thing I do is put them on Calcium (If their on Calcium I increase it slightly) This takes care of 95% of the cramps. But you don't want to use just any over the counter Calcium.(and I can rant about this all day) lol . The normal Calcium that you get in the stores are crap, most of it ends up sopping up Hcl. Anyway you want a calcium that is MCHC (Microcrystalline hydroxyapatite) or you are wasting your money and not doing anything.

Happy and a Healthy New Year to Everyone

Methotrexate reactions

>

> Hi guys,

>

> Happy New Year to us all!

>

> I'm just at 2 weeks on Meth now, and have started getting the occasional leg cramps when I'm in bed. Very very painful, and they leave my calves feeling quite bruised. It's a new symptom for me, anyway, and I'm wonderful if they're related to the Meth? Has anyone else had this as a side effect?

>

> I'm also getting small infections at the sides of my fingernails - not a huge problem of themselves, but they're not clearing up with antiseptic cream / salt water soaks etc - I have an artificial hip, and the biggest worry is that the infection will travel to the joint, in which case I could end up with major surgery again to remove it, clean out the infection, and replace it (shudder) - so

I'm off to hunt down some emergency antibiotics today.

>

> It's weird on the Meth - the infected areas don't particularly hurt, and aren't incredibly red and inflamed like you'd normally get - really obvious evidence of how the Meth is suppressing my immune system!

>

> Cheers,

>

>

>

> .......................................................................................................

> http://sutherland-studios.com.au

>

> Dummies author :

> http://tinyurl.com/CodesandCryptograms

> http://tinyurl.com/WordSearches

>

> .......................................................................................................

>

>

>

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>

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[Guest guest]

Thanks, Mitch! (No comment on my toy rant, huh? Smart guy.)

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mjcv29a@...Date: Thu, 6 Jan 2011 12:49:18 -0500Subject: Re: Methotrexate reactions--rant

Been out of town staying away from computer for most of the time but just read this. Whenever I have a patient that has cramps the very first thing I do is put them on Calcium (If their on Calcium I increase it slightly) This takes care of 95% of the cramps. But you don't want to use just any over the counter Calcium.(and I can rant about this all day) lol . The normal Calcium that you get in the stores are crap, most of it ends up sopping up Hcl. Anyway you want a calcium that is MCHC (Microcrystalline hydroxyapatite) or you are wasting your money and not doing anything.

Happy and a Healthy New Year to Everyone

Methotrexate reactions> > Hi guys,> > Happy New Year to us all!> > I'm just at 2 weeks on Meth now, and have started getting the occasional leg cramps when I'm in bed. Very very painful, and they leave my calves feeling quite bruised. It's a new symptom for me, anyway, and I'm wonderful if they're related to the Meth? Has anyone else had this as a side effect?> > I'm also getting small infections at the sides of my fingernails - not a huge problem of themselves, but they're not clearing up with antiseptic cream / salt water soaks etc - I have an artificial hip, and the biggest worry is that the infection will travel to the joint, in which case I could end up with major surgery again to remove it, clean out the infection, and replace it (shudder) - so I'm off to hunt down some emergency antibiotics today. > > It's weird on the Meth - the infected areas don't particularly hurt, and aren't incredibly red and inflamed like you'd normally get - really obvious evidence of how the Meth is suppressing my immune system!> > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neuro sarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Very smart guy!

Re: Methotrexate reactions--rant

Been out of town staying away from computer for most of the time but just read

this. Whenever I have a patient tha

[Guest guest]

You need to teach classes! wink winkLife may not always be the party we hoped for, but while we're here we might as well dance!

Subject: Re: Methotrexate reactions--rantTo: Neurosarcoidosis Date: Thursday, January 6, 2011, 6:33 PM

I've been with my wife 30 years. The one thing I've learned is when a lady has something to say, it's never a rant, it's just better to listen and then give whatever facial expression is correct for that particular discussion. I find the Sarc is eating away at me I don't need anything else to take away my life for saying the wrong thing. wink wink

Methotrexate reactions> > Hi guys,> > Happy New Year to us all!> > I'm just at 2 weeks on Meth now, and have started getting the occasional leg cramps when I'm in bed. Very very painful, and they leave my calves

feeling quite bruised. It's a new symptom for me, anyway, and I'm wonderful if they're related to the Meth? Has anyone else had this as a side effect?> > I'm also getting small infections at the sides of my fingernails - not a huge problem of themselves, but they're not clearing up with antiseptic cream / salt water soaks etc - I have an artificial hip, and the biggest worry is that the infection will travel to the joint, in which case I could end up with major surgery again to remove it, clean out the infection, and replace it (shudder) - so I'm off to hunt down some emergency antibiotics today. > > It's weird on the Meth - the infected areas don't particularly hurt, and aren't incredibly red and inflamed like you'd normally get - really obvious evidence of how the Meth is suppressing my immune system!> > Cheers,> > > >

........................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tin yurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neuro

sarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

I agree, teach classes let me know I will send him to you. lol

Methotrexate reactions> > Hi guys,> > Happy New Year to us all!> > I'm just at 2 weeks on Meth now, and have started getting the occasional leg cramps when I'm in bed. Very very painful, and they leave my calves feeling quite bruised. It's a new symptom for me, anyway, and I'm wonderful if they're related to the Meth? Has anyone else had this as a side effect?> > I'm also getting small infections at the sides of my fingernails - not a huge problem of themselves, but they're not clearing up with antiseptic cream / salt water soaks etc - I have an artificial hip, and the biggest worry is that the infection will travel to the joint, in which case I could end up with major surgery again to remove it, clean out the infection, and replace it (shudder) - so I'm off to hunt down some emergency antibiotics today. > > It's weird on the Meth - the infected areas don't particularly hurt, and aren't incredibly red and inflamed like you'd normally get - really obvious evidence of how the Meth is suppressing my immune system!> > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tin yurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neuro sarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Sorry guys I've been so busy, not sure what I've been doing, or don't remember, but I haven't had time to sit down at my computer, and my son's lap top cord broke, so while waiting for his cord to come he hijack mine, his came today, yea!  I was reading on my phone, but replying on my phone is just too much for me.

Anyway, I've been on Methotrexate for 7 years, I just this last year muscle cramps in places other then the legs, which I've had forever.  but now I get them in strange places too. sometimes they leave a bruised feeling.  I get infections on my finger nails too, but that's because I bite at the skin around my nails all the time, it's awful,

and I need to stop doing it, I put antibiotic ointment on them, and they heal up, which is good.  There are these great " blister " bandage, that heal really good, if you can't get one to heal, why do I know this, well I also pull the dry skin of my  heels when I forget to do what Rose said you should do, put something thick on your hands, or feet when dry and put gloves or socks on them overnight, when I remember to do that I don't have a problem, when I don't I pull the skin of the bottom of my feet, then I end up putting a blister bandage on it, it heals it, when I usually leave it on until it starts to fall off, by then my sore is healed, there great.

I guess now you all know how crazy I am.  I need to be doing something while watching TV, I found out that I can do solitaire on my phone, which keeps my hands  busy!   Although I have been having some anxious feelings, I had my Remicade at the increased dose, but don't feel better, the doctor said it may take a couple dosages before I notice a difference, so I'm trying to be patient. 

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

This started out as a simple response, but turned into a one-woman gripe session, so get comfy!

 

Regarding the leg cramps, according to drugs.com, muscle cramps are not listed as a side effect.  However, that doesn't mean that an individual can't experience that as a side effect.  I would look to other possible causes.  Do you drink a lot of soda?  The phosphorous can inhibit calcium absorption in your body, leading to cramps.  Are you getting enough calcium?  Too much or too little may cause cramps.  Think about any other changes in your lifestyle recently--exercise, foods, shoes, etc.  I have been plagued with calf cramps (Charley horses) and foot cramps since my teens, despite being a milk drinker & walker for most of my life.  Shortly after the systemic sarc symptoms began in 2000-2001, I started having muscle cramps all over my body--places you wouldn't think of having muscles.  The outside of my ankles, in my arms near my elbow while gesturing, just weird places.  Plus all the usual muscle cramps.  I tried quinine water, which didn't help, then my neuro put me on quinine sulfate tablets, which worked wonderfully for years, until the FDA decided to take it off the market.  Arrrrggghhhhh!  I don't understand the thinking of these agencies.  Of course, quinine carries risks; every drug on the market does.  The whole point is to weigh the risks & benefits.  So the past few years I've just dealt with the cramps.  When they get really bad, I take Baclofen for a few days & that seems to quiet them down a bit, but it doesn't work as well as the quinine.  As long as I'm griping about regulatory agencies, I'll get this off my chest:  it really bugs me when a bunch of toys are recalled because of small parts that can cause choking, or similar things.  (I'm not talking about lead or cadmium.)  The world is crammed with small objects that children can choke on.  Maybe we should scoop up all the pebbles & lock them away somewhere, or ban marbles.  The issue is adult supervision & common sense.  Many years ago there was a popular toy called Jarts (I think).  They were large feathered darts with a heavy metal tip.  You placed rings on the ground & tossed the Jarts at the rings.  Obviously, the tip could hurt someone if you hit them in the head with it, so we never let our kids play unless an adult was present.  Well, apparently a very small number of children were killed over several years time from being hit in the head with a Jart, so the toy was banned.  I don't want to sound uncaring, but thousands of kids are killed or seriously injured riding bikes, skateboards & skates, but they aren't banned!  Same for riding in cars.  Unfortunately, we will never make the world totally safe, for children or adults.  Kids can hit each other with rocks, sticks, horseshoes, whatever.  You teach & supervise them as best you can.  Drugs, by their very purpose, are harmful.  The trick is to reduce the potential for harm as much as possible, and then make educated judgments on the potential harm we can accept for the potential benefit.  The FDA has done great good, such as slowing the approval of Thalidomide, while it was being widely used in Europe.  As a result, there were far fewer babies born with severe limb defects in the U.S.  But sometimes it feels like we have an overprotective, fussy old aunt--you might poke someone's eye out!  You'll fall & break your neck!  Are American consumers really so stupid that we can't make our own decisions, " choose our own poison? "   Maybe we are.  Oh, well, I'm done ranting now.  I'll be interested to hear y'all's opinions of all this.

Oh, almost forgot your fingernail problem!  I don't know if you've tried this, but I used to do it when I was working in the hospital & washing my hands dozens of times a day.  Even now, in the winter when my skin starts cracking at my thumbs, I do this & it helps.  For just cracking, at bedtime, coat your hands liberally in baby oil or vaseline, then put on vinyl gloves like used in the hospital.  Repeat nightly as needed.  If it's just the thumbs, I cut the fingers off the gloves & put them over my thumbs to sleep, after applying salve to the thumbs.  You could do the same thing with antibiotic ointment.  Hope this suggestions helps.  I'd also consider seeing a dermatologist; also rule out a fungal infection, which can cause problems like this.  That's more common in the feet, but we are uncommon people, so consider everything! 

 

 

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22 

   

> To: Neurosarcoidosis > From: denise@...

> Date: Wed, 5 Jan 2011 08:11:39 +1100> Subject: Methotrexate reactions> > Hi guys,> > Happy New Year to us all!> > I'm just at 2 weeks on Meth now, and have started getting the occasional leg cramps when I'm in bed. Very very painful, and they leave my calves feeling quite bruised. It's a new symptom for me, anyway, and I'm wonderful if they're related to the Meth? Has anyone else had this as a side effect?

> > I'm also getting small infections at the sides of my fingernails - not a huge problem of themselves, but they're not clearing up with antiseptic cream / salt water soaks etc - I have an artificial hip, and the biggest worry is that the infection will travel to the joint, in which case I could end up with major surgery again to remove it, clean out the infection, and replace it (shudder) - so I'm off to hunt down some emergency antibiotics today.

> > It's weird on the Meth - the infected areas don't particularly hurt, and aren't incredibly red and inflamed like you'd normally get - really obvious evidence of how the Meth is suppressing my immune system!

> > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au

> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches

> > .......................................................................................................> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages

> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database

> >

[Guest guest]

You are very wise:)MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

I've been with my wife 30 years. The one thing I've learned is when a lady has something to say, it's never a rant, it's just better to listen and then give whatever facial expression is correct for that particular discussion. I find the Sarc is eating away at me I don't need anything else to take away my life for saying the wrong thing. wink wink

Methotrexate reactions

>

> Hi guys,

>

> Happy New Year to us all!

>

> I'm just at 2 weeks on Meth now, and have started getting the occasional leg cramps when I'm in bed. Very very painful, and they leave my calves feeling quite bruised. It's a new symptom for me, anyway, and I'm wonderful if they're related to the Meth? Has anyone else had this as a side effect?

>

> I'm also getting small infections at the sides of my fingernails - not a huge problem of themselves, but they're not clearing up with antiseptic cream / salt water soaks etc - I have an artificial hip, and the biggest worry is that the infection will travel to the joint, in which case I could end up with major surgery again to remove it, clean out the infection, and replace it (shudder) - so I'm off to hunt down some emergency antibiotics today.

>

> It's weird on the Meth - the infected areas don't particularly hurt, and aren't incredibly red and inflamed like you'd normally get - really obvious evidence of how the Meth is suppressing my immune system!

>

> Cheers,

>

>

>

> .......................................................................................................

> http://sutherland-studios.com.au

>

> Dummies author :

> http://tin

yurl.com/CodesandCryptograms

> http://tinyurl.com/WordSearches

>

> .......................................................................................................

>

>

>

> ------------------------------------

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

>

>

> Message Archives:-

> http://groups.yahoo.com/group/Neuro sarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

[Guest guest]

Marla, thanks for the input. You're not crazy, you just do crazy things! There's a difference. I have a habit of pulling hangnails on my fingers. I know I should get the clippers & cut them off, but for some reason I keep picking & pulling until my finger is sore & bleeding. I used to run my fingers through my hair & pull out tangles. I would do that while watching TV until I had a pile of hair & my scalp was sore. Luckily my hair was so thick that it wasn't obvious. There is an actual medical condition, a type of OCD if I remember right, where people can pull out so much hair they have bald spots. This habit (or compulsion?) of pulling out my hair was one reason I started keeping it short. Marla, if you really want to quit biting your nails, try Bitter Yuk. You can get it at pet stores. I used it to keep my dog Annie from eating the carpet. It is NASTY! But there is the possibility that you will just substitute something else if you do it to cope with anxiety. My ex-husband used to smoke AND bite chew his nails. I would tell him that he was allowed just one oral fixation; didn't work!

It must be very scary, wondering if the Remicade is still working. I don't remember if you are in therapy; maybe you need to talk to someone about your fears & anxiety. If you can't or don't want therapy, try journaling about it all. Just start writing--don't worry about spelling, punctuation, etc.--just write. It's hard for me to do, because I want to stop & rewrite (edit) what I'm writing, but when I just let the words flow, it releases the feelings. That can be frightening, but those feelings are there anyway. When you acknowledge them, you can actually deal with them, rather than living with this constant free-floating anxiety or (in my case) simmering resentment/anger; whatever is there, under the surface. This process can unearth some really painful memories, so you need someone to lean on if needed. Marla, you can call me any time, day or night, for this or any other situations. All those years catching babies gave me the ability to wake up at weird hours & go back to sleep without a problem. So you can really call me any time. Also, you don't have to keep what you've written; you may want to shred or burn it. I've written some pretty nasty stuff about people I love, that I would never want them to find later, but I had issues that I needed to deal with. So I destroy the writings once they've served their purpose.

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

To: Neurosarcoidosis From: mebramer@...Date: Sat, 8 Jan 2011 18:19:48 -0700Subject: Re: Methotrexate reactions--rant

Sorry guys I've been so busy, not sure what I've been doing, or don't remember, but I haven't had time to sit down at my computer, and my son's lap top cord broke, so while waiting for his cord to come he hijack mine, his came today, yea! I was reading on my phone, but replying on my phone is just too much for me. Anyway, I've been on Methotrexate for 7 years, I just this last year muscle cramps in places other then the legs, which I've had forever. but now I get them in strange places too. sometimes they leave a bruised feeling. I get infections on my finger nails too, but that's because I bite at the skin around my nails all the time, it's awful, and I need to stop doing it, I put antibiotic ointment on them, and they heal up, which is good. There are these great "blister" bandage, that heal really good, if you can't get one to heal, why do I know this, well I also pull the dry skin of my heels when I forget to do what Rose said you should do, put something thick on your hands, or feet when dry and put gloves or socks on them overnight, when I remember to do that I don't have a problem, when I don't I pull the skin of the bottom of my feet, then I end up putting a blister bandage on it, it heals it, when I usually leave it on until it starts to fall off, by then my sore is healed, there great. I guess now you all know how crazy I am. I need to be doing something while watching TV, I found out that I can do solitaire on my phone, which keeps my hands busy! Although I have been having some anxious feelings, I had my Remicade at the increased dose, but don't feel better, the doctor said it may take a couple dosages before I notice a difference, so I'm trying to be patient. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

This started out as a simple response, but turned into a one-woman gripe session, so get comfy! Regarding the leg cramps, according to drugs.com, muscle cramps are not listed as a side effect. However, that doesn't mean that an individual can't experience that as a side effect. I would look to other possible causes. Do you drink a lot of soda? The phosphorous can inhibit calcium absorption in your body, leading to cramps. Are you getting enough calcium? Too much or too little may cause cramps. Think about any other changes in your lifestyle recently--exercise, foods, shoes, etc. I have been plagued with calf cramps (Charley horses) and foot cramps since my teens, despite being a milk drinker & walker for most of my life. Shortly after the systemic sarc symptoms began in 2000-2001, I started having muscle cramps all over my body--places you wouldn't think of having muscles. The outside of my ankles, in my arms near my elbow while gesturing, just weird places. Plus all the usual muscle cramps. I tried quinine water, which didn't help, then my neuro put me on quinine sulfate tablets, which worked wonderfully for years, until the FDA decided to take it off the market. Arrrrggghhhhh! I don't understand the thinking of these agencies. Of course, quinine carries risks; every drug on the market does. The whole point is to weigh the risks & benefits. So the past few years I've just dealt with the cramps. When they get really bad, I take Baclofen for a few days & that seems to quiet them down a bit, but it doesn't work as well as the quinine. As long as I'm griping about regulatory agencies, I'll get this off my chest: it really bugs me when a bunch of toys are recalled because of small parts that can cause choking, or similar things. (I'm not talking about lead or cadmium.) The world is crammed with small objects that children can choke on. Maybe we should scoop up all the pebbles & lock them away somewhere, or ban marbles. The issue is adult supervision & common sense. Many years ago there was a popular toy called Jarts (I think). They were large feathered darts with a heavy metal tip. You placed rings on the ground & tossed the Jarts at the rings. Obviously, the tip could hurt someone if you hit them in the head with it, so we never let our kids play unless an adult was present. Well, apparently a very small number of children were killed over several years time from being hit in the head with a Jart, so the toy was banned. I don't want to sound uncaring, but thousands of kids are killed or seriously injured riding bikes, skateboards & skates, but they aren't banned! Same for riding in cars. Unfortunately, we will never make the world totally safe, for children or adults. Kids can hit each other with rocks, sticks, horseshoes, whatever. You teach & supervise them as best you can. Drugs, by their very purpose, are harmful. The trick is to reduce the potential for harm as much as possible, and then make educated judgments on the potential harm we can accept for the potential benefit. The FDA has done great good, such as slowing the approval of Thalidomide, while it was being widely used in Europe. As a result, there were far fewer babies born with severe limb defects in the U.S. But sometimes it feels like we have an overprotective, fussy old aunt--you might poke someone's eye out! You'll fall & break your neck! Are American consumers really so stupid that we can't make our own decisions, "choose our own poison?" Maybe we are. Oh, well, I'm done ranting now. I'll be interested to hear y'all's opinions of all this.Oh, almost forgot your fingernail problem! I don't know if you've tried this, but I used to do it when I was working in the hospital & washing my hands dozens of times a day. Even now, in the winter when my skin starts cracking at my thumbs, I do this & it helps. For just cracking, at bedtime, coat your hands liberally in baby oil or vaseline, then put on vinyl gloves like used in the hospital. Repeat nightly as needed. If it's just the thumbs, I cut the fingers off the gloves & put them over my thumbs to sleep, after applying salve to the thumbs. You could do the same thing with antibiotic ointment. Hope this suggestions helps. I'd also consider seeing a dermatologist; also rule out a fungal infection, which can cause problems like this. That's more common in the feet, but we are uncommon people, so consider everything!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Wed, 5 Jan 2011 08:11:39 +1100> Subject: Methotrexate reactions> > Hi guys,> > Happy New Year to us all!> > I'm just at 2 weeks on Meth now, and have started getting the occasional leg cramps when I'm in bed. Very very painful, and they leave my calves feeling quite bruised. It's a new symptom for me, anyway, and I'm wonderful if they're related to the Meth? Has anyone else had this as a side effect?> > I'm also getting small infections at the sides of my fingernails - not a huge problem of themselves, but they're not clearing up with antiseptic cream / salt water soaks etc - I have an artificial hip, and the biggest worry is that the infection will travel to the joint, in which case I could end up with major surgery again to remove it, clean out the infection, and replace it (shudder) - so I'm off to hunt down some emergency antibiotics today. > > It's weird on the Meth - the infected areas don't particularly hurt, and aren't incredibly red and inflamed like you'd normally get - really obvious evidence of how the Meth is suppressing my immune system!> > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Before you start reading this, there is some Religion talk in it. Thanks a ton Rose, I think I figured one problem, my FP put me on Lexapro, for night sweats, at first I thought it was working, then had some night sweats, so I quit,  then I thought well maybe it helped a little, went back on, that was last week, and I was a mess, the anxiety was crazy, now this week I feel so much better, I went off it again, I think it interacting in a neg. way with some of my other drugs, I really do feel much better, it's crazy what drugs do to us.  I also started a Bible Study last night, it's a Beth study, don't know if any of you have done her studies before but there awesome, we are doing the book of Revelation, and I'm doing it with some nurses I use to work with at the hospital's L & D, so I am really excited about that, last night was my first night, and it was so good just to see these women I haven't seen in forever, and it all started with one of them calling me and asking if I still do Kay, so she ordered so when I took her her order we of started talking and she told me about this BS, and I was so excited, I just feel God lead me to her, earlier that day I was telling myself I need a good Bible Study, and he answered.  How awesome is that.  So I think I'm on the right road, and yes I do have a wonderful therapist to talk to, and I can call her whenever I need her.

funny story, I was going to her every week when we were fighting for the Remicade, I was getting really depressed, she really helped me, and then I got the Remicade and felt better, after a couple more sessions she told me I didn't have to keep coming every week, I was doing good, and just call when I needed her.  

However, I have a son who has since he was little and still does pull his eyelashes out, he says he does it when hes bored?  Other wise he's OK, sometimes he says I need to see Joe's Dr. Joe is my Bipolar child, who is doing very well right now, in fact awesome. 

So I tell my other son OK, but the next day he changes his mind.  I think a lot of us have some kind of little annoying habit, it's just life.  I pull my hair out when I'm reading in bed, lol.   Marla

Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

Marla, thanks for the input.  You're not crazy, you just do crazy things!  There's a difference.  I have a habit of pulling hangnails on my fingers.  I know I should get the clippers & cut them off, but for some reason I keep picking & pulling until my finger is sore & bleeding.  I used to run my fingers through my hair & pull out tangles.  I would do that while watching TV until I had a pile of hair & my scalp was sore.  Luckily my hair was so thick that it wasn't obvious.  There is an actual medical condition, a type of OCD if I remember right, where people can pull out so much hair they have bald spots.  This habit (or compulsion?) of pulling out my hair was one reason I started keeping it short.  Marla, if you really want to quit biting your nails, try Bitter Yuk.  You can get it at pet stores.  I used it to keep my dog Annie from eating the carpet.  It is NASTY!  But there is the possibility that you will just substitute something else if you do it to cope with anxiety.  My ex-husband used to smoke AND bite chew his nails.  I would tell him that he was allowed just one oral fixation; didn't work!

 

It must be very scary, wondering if the Remicade is still working.  I don't remember if you are in therapy; maybe you need to talk to someone about your fears & anxiety.  If you can't or don't want therapy, try journaling about it all.  Just start writing--don't worry about spelling, punctuation, etc.--just write.  It's hard for me to do, because I want to stop & rewrite (edit) what I'm writing, but when I just let the words flow, it releases the feelings.  That can be frightening, but those feelings are there anyway.  When you acknowledge them, you can actually deal with them, rather than living with this constant free-floating anxiety or (in my case) simmering resentment/anger; whatever is there, under the surface.  This process can unearth some really painful memories, so you need someone to lean on if needed.  Marla, you can call me any time, day or night, for this or any other situations.  All those years catching babies gave me the ability to wake up at weird hours & go back to sleep without a problem.  So you can really call me any time.  Also, you don't have to keep what you've written; you may want to shred or burn it.  I've written some pretty nasty stuff about people I love, that I would never want them to find later, but I had issues that I needed to deal with.  So I destroy the writings once they've served their purpose.

Ramblin' RoseModerator

  

 

It's not that life is so short-------It's that we wait so long to begin. 

(attributed to Wooden, among others)  

To: Neurosarcoidosis From: mebramer@...Date: Sat, 8 Jan 2011 18:19:48 -0700

Subject: Re: Methotrexate reactions--rant

Sorry guys I've been so busy, not sure what I've been doing, or don't remember, but I haven't had time to sit down at my computer, and my son's lap top cord broke, so while waiting for his cord to come he hijack mine, his came today, yea!  I was reading on my phone, but replying on my phone is just too much for me.

Anyway, I've been on Methotrexate for 7 years, I just this last year muscle cramps in places other then the legs, which I've had forever.  but now I get them in strange places too. sometimes they leave a bruised feeling.  I get infections on my finger nails too, but that's because I bite at the skin around my nails all the time, it's awful,

and I need to stop doing it, I put antibiotic ointment on them, and they heal up, which is good.  There are these great " blister " bandage, that heal really good, if you can't get one to heal, why do I know this, well I also pull the dry skin of my  heels when I forget to do what Rose said you should do, put something thick on your hands, or feet when dry and put gloves or socks on them overnight, when I remember to do that I don't have a problem, when I don't I pull the skin of the bottom of my feet, then I end up putting a blister bandage on it, it heals it, when I usually leave it on until it starts to fall off, by then my sore is healed, there great.

I guess now you all know how crazy I am.  I need to be doing something while watching TV, I found out that I can do solitaire on my phone, which keeps my hands  busy!   Although I have been having some anxious feelings, I had my Remicade at the increased dose, but don't feel better, the doctor said it may take a couple dosages before I notice a difference, so I'm trying to be patient. 

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

This started out as a simple response, but turned into a one-woman gripe session, so get comfy! Regarding the leg cramps, according to drugs.com, muscle cramps are not listed as a side effect.  However, that doesn't mean that an individual can't experience that as a side effect.  I would look to other possible causes.  Do you drink a lot of soda?  The phosphorous can inhibit calcium absorption in your body, leading to cramps.  Are you getting enough calcium?  Too much or too little may cause cramps.  Think about any other changes in your lifestyle recently--exercise, foods, shoes, etc.  I have been plagued with calf cramps (Charley horses) and foot cramps since my teens, despite being a milk drinker & walker for most of my life.  Shortly after the systemic sarc symptoms began in 2000-2001, I started having muscle cramps all over my body--places you wouldn't think of having muscles.  The outside of my ankles, in my arms near my elbow while gesturing, just weird places.  Plus all the usual muscle cramps.  I tried quinine water, which didn't help, then my neuro put me on quinine sulfate tablets, which worked wonderfully for years, until the FDA decided to take it off the market.  Arrrrggghhhhh!  I don't understand the thinking of these agencies.  Of course, quinine carries risks; every drug on the market does.  The whole point is to weigh the risks & benefits.  So the past few years I've just dealt with the cramps.  When they get really bad, I take Baclofen for a few days & that seems to quiet them down a bit, but it doesn't work as well as the quinine.  As long as I'm griping about regulatory agencies, I'll get this off my chest:  it really bugs me when a bunch of toys are recalled because of small parts that can cause choking, or similar things.  (I'm not talking about lead or cadmium.)  The world is crammed with small objects that children can choke on.  Maybe we should scoop up all the pebbles & lock them away somewhere, or ban marbles.  The issue is adult supervision & common sense.  Many years ago there was a popular toy called Jarts (I think).  They were large feathered darts with a heavy metal tip.  You placed rings on the ground & tossed the Jarts at the rings.  Obviously, the tip could hurt someone if you hit them in the head with it, so we never let our kids play unless an adult was present.  Well, apparently a very small number of children were killed over several years time from being hit in the head with a Jart, so the toy was banned.  I don't want to sound uncaring, but thousands of kids are killed or seriously injured riding bikes, skateboards & skates, but they aren't banned!  Same for riding in cars.  Unfortunately, we will never make the world totally safe, for children or adults.  Kids can hit each other with rocks, sticks, horseshoes, whatever.  You teach & supervise them as best you can.  Drugs, by their very purpose, are harmful.  The trick is to reduce the potential for harm as much as possible, and then make educated judgments on the potential harm we can accept for the potential benefit.  The FDA has done great good, such as slowing the approval of Thalidomide, while it was being widely used in Europe.  As a result, there were far fewer babies born with severe limb defects in the U.S.  But sometimes it feels like we have an overprotective, fussy old aunt--you might poke someone's eye out!  You'll fall & break your neck!  Are American consumers really so stupid that we can't make our own decisions, " choose our own poison? "   Maybe we are.  Oh, well, I'm done ranting now.  I'll be interested to hear y'all's opinions of all this.

Oh, almost forgot your fingernail problem!  I don't know if you've tried this, but I used to do it when I was working in the hospital & washing my hands dozens of times a day.  Even now, in the winter when my skin starts cracking at my thumbs, I do this & it helps.  For just cracking, at bedtime, coat your hands liberally in baby oil or vaseline, then put on vinyl gloves like used in the hospital.  Repeat nightly as needed.  If it's just the thumbs, I cut the fingers off the gloves & put them over my thumbs to sleep, after applying salve to the thumbs.  You could do the same thing with antibiotic ointment.  Hope this suggestions helps.  I'd also consider seeing a dermatologist; also rule out a fungal infection, which can cause problems like this.  That's more common in the feet, but we are uncommon people, so consider everything! 

  

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22 

    > To: Neurosarcoidosis

> Date: Wed, 5 Jan 2011 08:11:39 +1100> Subject: Methotrexate reactions

> > Hi guys,> > Happy New Year to us all!> > I'm just at 2 weeks on Meth now, and have started getting the occasional leg cramps when I'm in bed. Very very painful, and they leave my calves feeling quite bruised. It's a new symptom for me, anyway, and I'm wonderful if they're related to the Meth? Has anyone else had this as a side effect?

> > I'm also getting small infections at the sides of my fingernails - not a huge problem of themselves, but they're not clearing up with antiseptic cream / salt water soaks etc - I have an artificial hip, and the biggest worry is that the infection will travel to the joint, in which case I could end up with major surgery again to remove it, clean out the infection, and replace it (shudder) - so I'm off to hunt down some emergency antibiotics today.

> > It's weird on the Meth - the infected areas don't particularly hurt, and aren't incredibly red and inflamed like you'd normally get - really obvious evidence of how the Meth is suppressing my immune system!

> > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au

> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches

> > .......................................................................................................> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages

> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database

> >

[Guest guest]

Marla, sounds like things are starting to level out again for you. You're right that drugs can mess us up, but sometimes it's just the wrong drug for our system or situation. I've not heard of Lexapro for night sweats, but if it helps maybe another drug in that class would work, without all the side effects. Enjoy your study; I'm in a group that meets every week. We missed 3 weeks due to the holidays & folks being gone, so I'm looking forward to getting started again.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Tue, 11 Jan 2011 11:36:49 -0700Subject: Re: Methotrexate reactions--rant

Before you start reading this, there is some Religion talk in it. Thanks a ton Rose, I think I figured one problem, my FP put me on Lexapro, for night sweats, at first I thought it was working, then had some night sweats, so I quit, then I thought well maybe it helped a little, went back on, that was last week, and I was a mess, the anxiety was crazy, now this week I feel so much better, I went off it again, I think it interacting in a neg. way with some of my other drugs, I really do feel much better, it's crazy what drugs do to us. I also started a Bible Study last night, it's a Beth study, don't know if any of you have done her studies before but there awesome, we are doing the book of Revelation, and I'm doing it with some nurses I use to work with at the hospital's L & D, so I am really excited about that, last night was my first night, and it was so good just to see these women I haven't seen in forever, and it all started with one of them calling me and asking if I still do Kay, so she ordered so when I took her her order we of started talking and she told me about this BS, and I was so excited, I just feel God lead me to her, earlier that day I was telling myself I need a good Bible Study, and he answered. How awesome is that. So I think I'm on the right road, and yes I do have a wonderful therapist to talk to, and I can call her whenever I need her. funny story, I was going to her every week when we were fighting for the Remicade, I was getting really depressed, she really helped me, and then I got the Remicade and felt better, after a couple more sessions she told me I didn't have to keep coming every week, I was doing good, and just call when I needed her. However, I have a son who has since he was little and still does pull his eyelashes out, he says he does it when hes bored? Other wise he's OK, sometimes he says I need to see Joe's Dr. Joe is my Bipolar child, who is doing very well right now, in fact awesome. So I tell my other son OK, but the next day he changes his mind. I think a lot of us have some kind of little annoying habit, it's just life. I pull my hair out when I'm reading in bed, lol. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Marla, thanks for the input. You're not crazy, you just do crazy things! There's a difference. I have a habit of pulling hangnails on my fingers. I know I should get the clippers & cut them off, but for some reason I keep picking & pulling until my finger is sore & bleeding. I used to run my fingers through my hair & pull out tangles. I would do that while watching TV until I had a pile of hair & my scalp was sore. Luckily my hair was so thick that it wasn't obvious. There is an actual medical condition, a type of OCD if I remember right, where people can pull out so much hair they have bald spots. This habit (or compulsion?) of pulling out my hair was one reason I started keeping it short. Marla, if you really want to quit biting your nails, try Bitter Yuk. You can get it at pet stores. I used it to keep my dog Annie from eating the carpet. It is NASTY! But there is the possibility that you will just substitute something else if you do it to cope with anxiety. My ex-husband used to smoke AND bite chew his nails. I would tell him that he was allowed just one oral fixation; didn't work! It must be very scary, wondering if the Remicade is still working. I don't remember if you are in therapy; maybe you need to talk to someone about your fears & anxiety. If you can't or don't want therapy, try journaling about it all. Just start writing--don't worry about spelling, punctuation, etc.--just write. It's hard for me to do, because I want to stop & rewrite (edit) what I'm writing, but when I just let the words flow, it releases the feelings. That can be frightening, but those feelings are there anyway. When you acknowledge them, you can actually deal with them, rather than living with this constant free-floating anxiety or (in my case) simmering resentment/anger; whatever is there, under the surface. This process can unearth some really painful memories, so you need someone to lean on if needed. Marla, you can call me any time, day or night, for this or any other situations. All those years catching babies gave me the ability to wake up at weird hours & go back to sleep without a problem. So you can really call me any time. Also, you don't have to keep what you've written; you may want to shred or burn it. I've written some pretty nasty stuff about people I love, that I would never want them to find later, but I had issues that I needed to deal with. So I destroy the writings once they've served their purpose.

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

To: Neurosarcoidosis From: mebramer@...Date: Sat, 8 Jan 2011 18:19:48 -0700

Subject: Re: Methotrexate reactions--rant

Sorry guys I've been so busy, not sure what I've been doing, or don't remember, but I haven't had time to sit down at my computer, and my son's lap top cord broke, so while waiting for his cord to come he hijack mine, his came today, yea! I was reading on my phone, but replying on my phone is just too much for me. Anyway, I've been on Methotrexate for 7 years, I just this last year muscle cramps in places other then the legs, which I've had forever. but now I get them in strange places too. sometimes they leave a bruised feeling. I get infections on my finger nails too, but that's because I bite at the skin around my nails all the time, it's awful, and I need to stop doing it, I put antibiotic ointment on them, and they heal up, which is good. There are these great "blister" bandage, that heal really good, if you can't get one to heal, why do I know this, well I also pull the dry skin of my heels when I forget to do what Rose said you should do, put something thick on your hands, or feet when dry and put gloves or socks on them overnight, when I remember to do that I don't have a problem, when I don't I pull the skin of the bottom of my feet, then I end up putting a blister bandage on it, it heals it, when I usually leave it on until it starts to fall off, by then my sore is healed, there great. I guess now you all know how crazy I am. I need to be doing something while watching TV, I found out that I can do solitaire on my phone, which keeps my hands busy! Although I have been having some anxious feelings, I had my Remicade at the increased dose, but don't feel better, the doctor said it may take a couple dosages before I notice a difference, so I'm trying to be patient. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

This started out as a simple response, but turned into a one-woman gripe session, so get comfy! Regarding the leg cramps, according to drugs.com, muscle cramps are not listed as a side effect. However, that doesn't mean that an individual can't experience that as a side effect. I would look to other possible causes. Do you drink a lot of soda? The phosphorous can inhibit calcium absorption in your body, leading to cramps. Are you getting enough calcium? Too much or too little may cause cramps. Think about any other changes in your lifestyle recently--exercise, foods, shoes, etc. I have been plagued with calf cramps (Charley horses) and foot cramps since my teens, despite being a milk drinker & walker for most of my life. Shortly after the systemic sarc symptoms began in 2000-2001, I started having muscle cramps all over my body--places you wouldn't think of having muscles. The outside of my ankles, in my arms near my elbow while gesturing, just weird places. Plus all the usual muscle cramps. I tried quinine water, which didn't help, then my neuro put me on quinine sulfate tablets, which worked wonderfully for years, until the FDA decided to take it off the market. Arrrrggghhhhh! I don't understand the thinking of these agencies. Of course, quinine carries risks; every drug on the market does. The whole point is to weigh the risks & benefits. So the past few years I've just dealt with the cramps. When they get really bad, I take Baclofen for a few days & that seems to quiet them down a bit, but it doesn't work as well as the quinine. As long as I'm griping about regulatory agencies, I'll get this off my chest: it really bugs me when a bunch of toys are recalled because of small parts that can cause choking, or similar things. (I'm not talking about lead or cadmium.) The world is crammed with small objects that children can choke on. Maybe we should scoop up all the pebbles & lock them away somewhere, or ban marbles. The issue is adult supervision & common sense. Many years ago there was a popular toy called Jarts (I think). They were large feathered darts with a heavy metal tip. You placed rings on the ground & tossed the Jarts at the rings. Obviously, the tip could hurt someone if you hit them in the head with it, so we never let our kids play unless an adult was present. Well, apparently a very small number of children were killed over several years time from being hit in the head with a Jart, so the toy was banned. I don't want to sound uncaring, but thousands of kids are killed or seriously injured riding bikes, skateboards & skates, but they aren't banned! Same for riding in cars. Unfortunately, we will never make the world totally safe, for children or adults. Kids can hit each other with rocks, sticks, horseshoes, whatever. You teach & supervise them as best you can. Drugs, by their very purpose, are harmful. The trick is to reduce the potential for harm as much as possible, and then make educated judgments on the potential harm we can accept for the potential benefit. The FDA has done great good, such as slowing the approval of Thalidomide, while it was being widely used in Europe. As a result, there were far fewer babies born with severe limb defects in the U.S. But sometimes it feels like we have an overprotective, fussy old aunt--you might poke someone's eye out! You'll fall & break your neck! Are American consumers really so stupid that we can't make our own decisions, "choose our own poison?" Maybe we are. Oh, well, I'm done ranting now. I'll be interested to hear y'all's opinions of all this.Oh, almost forgot your fingernail problem! I don't know if you've tried this, but I used to do it when I was working in the hospital & washing my hands dozens of times a day. Even now, in the winter when my skin starts cracking at my thumbs, I do this & it helps. For just cracking, at bedtime, coat your hands liberally in baby oil or vaseline, then put on vinyl gloves like used in the hospital. Repeat nightly as needed. If it's just the thumbs, I cut the fingers off the gloves & put them over my thumbs to sleep, after applying salve to the thumbs. You could do the same thing with antibiotic ointment. Hope this suggestions helps. I'd also consider seeing a dermatologist; also rule out a fungal infection, which can cause problems like this. That's more common in the feet, but we are uncommon people, so consider everything!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Wed, 5 Jan 2011 08:11:39 +1100> Subject: Methotrexate reactions> > Hi guys,> > Happy New Year to us all!> > I'm just at 2 weeks on Meth now, and have started getting the occasional leg cramps when I'm in bed. Very very painful, and they leave my calves feeling quite bruised. It's a new symptom for me, anyway, and I'm wonderful if they're related to the Meth? Has anyone else had this as a side effect?> > I'm also getting small infections at the sides of my fingernails - not a huge problem of themselves, but they're not clearing up with antiseptic cream / salt water soaks etc - I have an artificial hip, and the biggest worry is that the infection will travel to the joint, in which case I could end up with major surgery again to remove it, clean out the infection, and replace it (shudder) - so I'm off to hunt down some emergency antibiotics today. > > It's weird on the Meth - the infected areas don't particularly hurt, and aren't incredibly red and inflamed like you'd normally get - really obvious evidence of how the Meth is suppressing my immune system!> > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

We still have our lights up too, but I forget to turn them on, but our cul da sac has 3 houses that are still turning them on, and I see a lot of business with them still on too.  I've heard of people keeping a tree up all year and putting like now it would be valentines, then Easter, then I'm not sure what, I guess whatever you want.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

Don't worry about your office; I just took down my Christmas tree today!  We put it out back by the dining room window, like last year.  It will probably stay there until spring, when we'll put it in the back of the yard to add to the " small animal habitat. "   I sat on a stool last night picking off every piece of tinsel; don't want a little chipmunk or bunny getting a bowel obstruction.  A friend gave me some pine cones tonight, so the little kids & I will coat them with peanut butter & string them on the tree.  Last year we added birdseed, but the squirrels got it all anyway, so this year I'm just using the peanut butter--less mess!  Also going to string some old apples out there.  Now I just need to start putting some of the other decorations away!  The kids are teasing me because mine is the only house in the neighborhood with the Christmas lights still on.  Lots of people leave the lights up, but nobody else is still turning them on!  I don't care; it's makes me happy, so why not?!?  Besides, it's easy for people to find our house.

Ramblin' RoseModerator

 COLTS ROCK!    (Jets pffbbtt!)

 

To: Neurosarcoidosis From: mebramer@...Date: Thu, 13 Jan 2011 11:47:14 -0700

Subject: Re: Methotrexate reactions--rant

Thanks Rose, I know I'm doing better, I just thing that was not a good drug for me, and I don't feel the anxiety any more.  If I get really tired, I can feel irritable, and I will take 1mg Lorazapam, which I take at night for the kicking legs, and it calms me in a nice way.

less is better I'm thinking. I really need to get into my office and clean it up, I let it go over the holidays, but now's the time. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

Marla, sounds like things are starting to level out again for you.  You're right that drugs can mess us up, but sometimes it's just the wrong drug for our system or situation.  I've not heard of Lexapro for night sweats, but if it helps maybe another drug in that class would work, without all the side effects.  Enjoy your study; I'm in a group that meets every week.  We missed 3 weeks due to the holidays & folks being gone, so I'm looking forward to getting started again.

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22 

  

To: Neurosarcoidosis From: mebramer@...Date: Tue, 11 Jan 2011 11:36:49 -0700

Subject: Re: Methotrexate reactions--rantBefore you start reading this, there is some Religion talk in it. Thanks a ton Rose, I think I figured one problem, my FP put me on Lexapro, for night sweats,

at first I thought it was working, then had some night sweats, so I quit,  then I thought well maybe it helped a little, went back on, that was last week, and I was a mess, the anxiety was crazy, now this week I feel so much better, I went off it again, I think it interacting in a neg. way with some of my other drugs, I really do feel much better, it's crazy what drugs do to us.  I also started a Bible Study last night, it's a Beth study, don't know if any of you have done her studies before but there awesome, we are doing the book of Revelation, and I'm doing it with some nurses I use to work with at the hospital's L & D, so I am really excited about that, last night was my first night, and it was so good just to see these women I haven't seen in forever, and it all started with one of them calling me and asking if I still do Kay, so she ordered so when I took her her order we of started talking and she told me about this BS, and I was so excited, I just feel God lead me to her, earlier that day I was telling myself I need a good Bible Study, and he answered.  How awesome is that.  So I think I'm on the right road, and yes I do have a wonderful therapist to talk to, and I can call her whenever I need her.

funny story, I was going to her every week when we were fighting for the Remicade, I was getting really depressed, she really helped me, and then I got the Remicade and felt better, after a couple more sessions she told me I didn't have to keep coming every week, I was doing good, and just call when I needed her.  

However, I have a son who has since he was little and still does pull his eyelashes out, he says he does it when hes bored?  Other wise he's OK, sometimes he says I need to see Joe's Dr. Joe is my Bipolar child, who is doing very well right now, in fact awesome. 

So I tell my other son OK, but the next day he changes his mind.  I think a lot of us have some kind of little annoying habit, it's just life.  I pull my hair out when I'm reading in bed, lol.   Marla

Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

Marla, thanks for the input.  You're not crazy, you just do crazy things!  There's a difference.  I have a habit of pulling hangnails on my fingers.  I know I should get the clippers & cut them off, but for some reason I keep picking & pulling until my finger is sore & bleeding.  I used to run my fingers through my hair & pull out tangles.  I would do that while watching TV until I had a pile of hair & my scalp was sore.  Luckily my hair was so thick that it wasn't obvious.  There is an actual medical condition, a type of OCD if I remember right, where people can pull out so much hair they have bald spots.  This habit (or compulsion?) of pulling out my hair was one reason I started keeping it short.  Marla, if you really want to quit biting your nails, try Bitter Yuk.  You can get it at pet stores.  I used it to keep my dog Annie from eating the carpet.  It is NASTY!  But there is the possibility that you will just substitute something else if you do it to cope with anxiety.  My ex-husband used to smoke AND bite chew his nails.  I would tell him that he was allowed just one oral fixation; didn't work!

 It must be very scary, wondering if the Remicade is still working.  I don't remember if you are in therapy; maybe you need to talk to someone about your fears & anxiety.  If you can't or don't want therapy, try journaling about it all.  Just start writing--don't worry about spelling, punctuation, etc.--just write.  It's hard for me to do, because I want to stop & rewrite (edit) what I'm writing, but when I just let the words flow, it releases the feelings.  That can be frightening, but those feelings are there anyway.  When you acknowledge them, you can actually deal with them, rather than living with this constant free-floating anxiety or (in my case) simmering resentment/anger; whatever is there, under the surface.  This process can unearth some really painful memories, so you need someone to lean on if needed.  Marla, you can call me any time, day or night, for this or any other situations.  All those years catching babies gave me the ability to wake up at weird hours & go back to sleep without a problem.  So you can really call me any time.  Also, you don't have to keep what you've written; you may want to shred or burn it.  I've written some pretty nasty stuff about people I love, that I would never want them to find later, but I had issues that I needed to deal with.  So I destroy the writings once they've served their purpose.

Ramblin' RoseModerator

  

 

It's not that life is so short-------It's that we wait so long to begin. 

(attributed to Wooden, among others)  

To: Neurosarcoidosis From: mebramer@...Date: Sat, 8 Jan 2011 18:19:48 -0700 Subject: Re: Methotrexate reactions--rant

Sorry guys I've been so busy, not sure what I've been doing, or don't remember, but I haven't had time to sit down at my computer, and my son's lap top cord broke, so while waiting for his cord to come he hijack mine, his came today, yea!  I was reading on my phone, but replying on my phone is just too much for me.

Anyway, I've been on Methotrexate for 7 years, I just this last year muscle cramps in places other then the legs, which I've had forever.  but now I get them in strange places too. sometimes they leave a bruised feeling.  I get infections on my finger nails too, but that's because I bite at the skin around my nails all the time, it's awful,

and I need to stop doing it, I put antibiotic ointment on them, and they heal up, which is good.  There are these great " blister " bandage, that heal really good, if you can't get one to heal, why do I know this, well I also pull the dry skin of my  heels when I forget to do what Rose said you should do, put something thick on your hands, or feet when dry and put gloves or socks on them overnight, when I remember to do that I don't have a problem, when I don't I pull the skin of the bottom of my feet, then I end up putting a blister bandage on it, it heals it, when I usually leave it on until it starts to fall off, by then my sore is healed, there great.

I guess now you all know how crazy I am.  I need to be doing something while watching TV, I found out that I can do solitaire on my phone, which keeps my hands  busy!   Although I have been having some anxious feelings, I had my Remicade at the increased dose, but don't feel better, the doctor said it may take a couple dosages before I notice a difference, so I'm trying to be patient. 

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

This started out as a simple response, but turned into a one-woman gripe session, so get comfy! Regarding the leg cramps, according to drugs.com, muscle cramps are not listed as a side effect.  However, that doesn't mean that an individual can't experience that as a side effect.  I would look to other possible causes.  Do you drink a lot of soda?  The phosphorous can inhibit calcium absorption in your body, leading to cramps.  Are you getting enough calcium?  Too much or too little may cause cramps.  Think about any other changes in your lifestyle recently--exercise, foods, shoes, etc.  I have been plagued with calf cramps (Charley horses) and foot cramps since my teens, despite being a milk drinker & walker for most of my life.  Shortly after the systemic sarc symptoms began in 2000-2001, I started having muscle cramps all over my body--places you wouldn't think of having muscles.  The outside of my ankles, in my arms near my elbow while gesturing, just weird places.  Plus all the usual muscle cramps.  I tried quinine water, which didn't help, then my neuro put me on quinine sulfate tablets, which worked wonderfully for years, until the FDA decided to take it off the market.  Arrrrggghhhhh!  I don't understand the thinking of these agencies.  Of course, quinine carries risks; every drug on the market does.  The whole point is to weigh the risks & benefits.  So the past few years I've just dealt with the cramps.  When they get really bad, I take Baclofen for a few days & that seems to quiet them down a bit, but it doesn't work as well as the quinine.  As long as I'm griping about regulatory agencies, I'll get this off my chest:  it really bugs me when a bunch of toys are recalled because of small parts that can cause choking, or similar things.  (I'm not talking about lead or cadmium.)  The world is crammed with small objects that children can choke on.  Maybe we should scoop up all the pebbles & lock them away somewhere, or ban marbles.  The issue is adult supervision & common sense.  Many years ago there was a popular toy called Jarts (I think).  They were large feathered darts with a heavy metal tip.  You placed rings on the ground & tossed the Jarts at the rings.  Obviously, the tip could hurt someone if you hit them in the head with it, so we never let our kids play unless an adult was present.  Well, apparently a very small number of children were killed over several years time from being hit in the head with a Jart, so the toy was banned.  I don't want to sound uncaring, but thousands of kids are killed or seriously injured riding bikes, skateboards & skates, but they aren't banned!  Same for riding in cars.  Unfortunately, we will never make the world totally safe, for children or adults.  Kids can hit each other with rocks, sticks, horseshoes, whatever.  You teach & supervise them as best you can.  Drugs, by their very purpose, are harmful.  The trick is to reduce the potential for harm as much as possible, and then make educated judgments on the potential harm we can accept for the potential benefit.  The FDA has done great good, such as slowing the approval of Thalidomide, while it was being widely used in Europe.  As a result, there were far fewer babies born with severe limb defects in the U.S.  But sometimes it feels like we have an overprotective, fussy old aunt--you might poke someone's eye out!  You'll fall & break your neck!  Are American consumers really so stupid that we can't make our own decisions, " choose our own poison? "   Maybe we are.  Oh, well, I'm done ranting now.  I'll be interested to hear y'all's opinions of all this.

Oh, almost forgot your fingernail problem!  I don't know if you've tried this, but I used to do it when I was working in the hospital & washing my hands dozens of times a day.  Even now, in the winter when my skin starts cracking at my thumbs, I do this & it helps.  For just cracking, at bedtime, coat your hands liberally in baby oil or vaseline, then put on vinyl gloves like used in the hospital.  Repeat nightly as needed.  If it's just the thumbs, I cut the fingers off the gloves & put them over my thumbs to sleep, after applying salve to the thumbs.  You could do the same thing with antibiotic ointment.  Hope this suggestions helps.  I'd also consider seeing a dermatologist; also rule out a fungal infection, which can cause problems like this.  That's more common in the feet, but we are uncommon people, so consider everything! 

  

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22 

    > To: Neurosarcoidosis

> Date: Wed, 5 Jan 2011 08:11:39 +1100> Subject: Methotrexate reactions

> > Hi guys,> > Happy New Year to us all!> > I'm just at 2 weeks on Meth now, and have started getting the occasional leg cramps when I'm in bed. Very very painful, and they leave my calves feeling quite bruised. It's a new symptom for me, anyway, and I'm wonderful if they're related to the Meth? Has anyone else had this as a side effect?

> > I'm also getting small infections at the sides of my fingernails - not a huge problem of themselves, but they're not clearing up with antiseptic cream / salt water soaks etc - I have an artificial hip, and the biggest worry is that the infection will travel to the joint, in which case I could end up with major surgery again to remove it, clean out the infection, and replace it (shudder) - so I'm off to hunt down some emergency antibiotics today.

> > It's weird on the Meth - the infected areas don't particularly hurt, and aren't incredibly red and inflamed like you'd normally get - really obvious evidence of how the Meth is suppressing my immune system!

> > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au

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