Methotrexate

[Guest guest]

I just took my 4th meth shot Wednesday. My hubby is giving it to me. The pills wreaked havoc with my tummy and bowels. So far so good with the shots. The only this is I got nauseas Wednesday until this morning. I am taking folic acid everyday. Make SURE you take it! Definitely take the shots.

Diane in TX

[Guest guest]

Judy,

My heart goes out to you-- truly. I so understand the issues both of you are facing. It is so very hard for our spouses to have to tend to our hygiene needs-- and we all know that it is possible that we may be in that place eventually.

as for the MTX-- the normal dose is 15mg per week, and you may do well to get the injections rather than the tablets-- as that way it bypasses the liver. I know that they start you at 7.5 and will have you go up over a couple of weeks.

I find that it makes me tired, and I need a day to sleep--so I take it on Fri or Sat night when I know I don't have anything to do during the weekends.

I'm also on the Plaquenil and the Remicade. The Remicade has helped with the bone pain- along with the pulmonary and sarc induced arthritis. I did just find out that I have both Rheumatoid and Osteoarthritis in addition to the sarc induced-- so damn.

I've not had any problems with any of the immunosupressants that I'm on now-- except that I do need to sleep more. I am careful about being out where people are sick-- as I know that I'm at higher risk.

Judy, hang in there and know that we are keeping you in our thoughts and prayers.

Hugs,

Tracie

NS Co-owner/moderator

[Guest guest]

Hi Judy,There's so much to say and right now I can't pull it out to say it. I have been at the low point you are describing. The pain can be unbelieveable and indescribeable. The effect on our lives and the lives of our families can be traumatic. As I read your email I related to so much of what you said. Just when I think I can go no lower and the road ahead is too bleak my faith pulls me through. Please know that you will be in my thoughts and prayers. If you should want to email me please know that I am here to listen. My email: macandtosh626@... Just as this disease restricts there are restrictions as to what can be said regarding faith on this forum. I want to shout out what I know but this isn't permissible. I would love to share with you.Blessings,BeckyJudy wrote: Will I finely got my doc to order methotrexate. He ordered 7.5mg per week. What has those who have taken it experienced? Is it hard on the stomach. Saw my hematologist today. I have been going for weekly Procrit and IV iron. Since having the 23 surgeries on my knees due to post Op MRSA, I was on Vancomycin and other IV Antibiotics. My bone marrow is damaged from all the meds they used to treat my infection. Sometimes I was on 7 ahtibiotics at a time. Seems like the MRSA is now controlled. I am off the IV meds but am on PO Keflex for 1 year. I have had sarcoid since 1971. I have been having terrible pain for the last six weeks.

Hardly have a minute with out terrible bone pain all over my body. Vicodin ES does little to relieve it. I am on 20mg of prednisone for many years. They would really like me to be off it or at atleast try to lower the dose. I am feeling very down with all this. My husband ot 43 years suddenly began sobbing last week. He is very concerend that I will be may be doieing soon. I have been having problems with taken care of wiping my because of the spine pain and stiffness. He's been a real trooper/ He had such a terrible look on his face and just blurted out thatWiping my butt was not his favorite thing to do but he knew that in the future he knew he would give anything to still be wiping me. They are also telling us that I have very mild kidney failure. Friends I really need some support right now. Judy in burg __________________________________________________

[Guest guest]

Judy I don't know what to say except you and your husband will be in my prayers, and I hope you get some good relief soon....ConnieJudy wrote: Will I finely got my doc to order methotrexate. He ordered 7.5mg per week.What has those who have taken it experienced? Is it hard on the stomach.Saw my hematologist today. I have been going for weekly Procrit and IV iron. Since having the 23 surgeries on my knees due to post Op MRSA, I was on Vancomycin and other IV Antibiotics. My bone

marrow is damaged from all the meds they used to treat my infection. Sometimes I was on 7 ahtibiotics at a time.Seems like the MRSA is now controlled. I am off the IV meds but am on PO Keflex for 1 year.I have had sarcoid since 1971. I have been having terrible pain for the last six weeks. Hardly have a minute with out terrible bone pain all over my body. Vicodin ES does little to relieve it. I am on 20mg of prednisone for many years. They would really like me to be off it or atatleast try to lower the dose.I am feeling very down with all this. My husband ot 43 years suddenly began sobbing last week. He is very concerend that I will be may be doieing soon. I have been having problems with taken care of wiping mybecause of the spine pain and stiffness.He's been a real trooper/ He had such a terrible look on his face and just blurted out thatWiping my butt was not his favorite thing to do but he

knew that in the future he knew he would give anything to still be wiping me.They are also telling us that I have very mild kidney failure.Friends I really need some support right now. Judy in burg

Don't pick lemons.

See all the new 2007 cars at Yahoo! Autos.

[Guest guest]

Judy,

I know how hard this is, both on you and your husband. There are several sites for "caregivers" where he could go and get some support also.

Also, if it's ok with you-- he is welcome on our site. We've had and still have several caregivers that actively participate.

I'm glad that he can tell you his fears-- and that you can talk about this.

What I'd like you to try is a good calcium supplement- and see if putting back some of the calcium that the prednisone is leaching from your bones helps with that pain. For me, it truly helped.

Do you have hypercalcuria or hypercalcemia?

That would be the only reason not to take a supplement.

I know prior to starting the Remicade-- that my bone pain was so much worse.

I did find that with the supplement, that it backed down somewhat.

Methotrexate will be something that you want to take with food, and it will make you tired, maybe feel like you've got a touch of the flu. The maximum dose they use is 15mg a week, and if you get the shots instead of the tablets, it will bypass your liver and so you won't have the liver toxicity buildup.

Your MD's should do a CBC and Liver Function Test monthly to make sure you aren't getting toxic. Most of us haven't had that problem, but like I say-- the shots will bypass that problem.

Your hubby sounds like a great guy-- I know that for all of us, the thought of having to have someone take care of our personal hygiene is humbling-- so say the least.

I had a friend that just recently passed from MS-- and I have to tell you-- she had such a great attitude about all these issues. It may not be what we dreamed of -- and most of us are in our 40's and 50's-- so we all thought we'd not be dealing with these things until we were 80 and senile.

It sure sucks.

You may want to get a copy of Piburns book-- ONE MANS J0URNEY ALONGSIDE HIS CHRONICALLY ILL WIFE.

Many of us have read it, and I don't know anyone that didn't get some insight into chronic illness.

If your husband continues to have difficulty dealing with your illness- you might want to suggest he see the Md, sometimes our caregivers develop depression that can be helped with a mild antidepressant.

It can truly help.

Love to you,

Tracie

NS Co-owner/moderator

[Guest guest]

Judy, I wanted you to know my prayers are also with you. I have been that sick and back again. Well not totally back again but, some times you have to remember it takes baby steps. I am taking methotrexate and i wanted to share some information with you about how it works with me. My Neuro is slowly weening me off of steroids i am down to 7.5 mg. I take 10 mg's of methotrexate a week. I had flu like symptoms for a while and it makes me really tired for a couple of days. But, then i seem to feel fine. I noticed that the longer that i take them the less the symptoms are. Except for the tiredness. I lost all of the hair on my legs and some on my head. I know thats an odd symptom but is is a kemo drug so i guess it's to be expected. My neuro is trying to replace the steroids with methotrexate. I hope that this information helps you. Hugs to you Connie Griffis wrote: Judy I don't know what to say except you and your husband will be in my prayers, and I hope you get some good relief soon....ConnieJudy <rjbasso (AT) verizon (DOT) net> wrote: Will I finely got my doc to order methotrexate. He ordered 7.5mg per week.What has those who have taken it

experienced? Is it hard on the stomach.Saw my hematologist today. I have been going for weekly Procrit and IV iron. Since having the 23 surgeries on my knees due to post Op MRSA, I was on Vancomycin and other IV Antibiotics. My bone marrow is damaged from all the meds they used to treat my infection. Sometimes I was on 7 ahtibiotics at a time.Seems like the MRSA is now controlled. I am off the IV meds but am on PO Keflex for 1 year.I have had sarcoid since 1971. I have been having terrible pain for the last six weeks. Hardly have a minute with out terrible bone pain all over my body. Vicodin ES does little to relieve it. I am on 20mg of prednisone for many years. They would really like me to be off it or atatleast try to lower the dose.I am feeling very down with all this. My husband ot 43 years suddenly began sobbing last week. He is very concerend that I will be may be doieing soon. I have been

having problems with taken care of wiping mybecause of the spine pain and stiffness.He's been a real trooper/ He had such a terrible look on his face and just blurted out thatWiping my butt was not his favorite thing to do but he knew that in the future he knew he would give anything to still be wiping me.They are also telling us that I have very mild kidney failure.Friends I really need some support right now. Judy in burg Don't pick lemons.See all the new 2007 cars at Yahoo! Autos.

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[Guest guest]

They first put me on methotrexate pills.....they told me within the

first 24-36 hours I could experience nausea and vomiting......well I

think I made it to hour 24 and a minute or two when the vomiting

started.......I was home alone, my husband at the time gone and my

sister also gone.....I was so thankful for a rheum nurse practioner

whom I had worked with but also worked with my dr at the time called

me throughout the day to check on me and would have sent an ambulence

if the meds hadn't resolved the vomiting........after that they put

me on the injections which luckily I had less side effects too, but

after about a month my liver functions had sky rocketed, ended up

with a liver biopsy (so not fun...lol)Anyway after that they stopped

it completely. Until I get some kind of insurance I just make due

with pain meds and occasional steroids. I hope and pray that you

don't have any of these side effects and that you get some much

needed relief.

Kimber

Will I finely got my doc to

order methotrexate. He ordered 7.5mg per

> week.

>

> What has those who have taken it experienced? Is it hard on the

stomach.

>

> Saw my hematologist today. I have been going for weekly Procrit and

IV

> iron. Since having the 23 surgeries on my knees due to post Op

MRSA, I

> was on Vancomycin and other IV Antibiotics. My bone marrow is

damaged

> from all the meds they used to treat my infection. Sometimes I was

on 7

> ahtibiotics at a time.

>

> Seems like the MRSA is now controlled. I am off the IV meds but am

on

> PO Keflex for 1 year.

>

> I have had sarcoid since 1971. I have been having terrible pain for

the

> last six weeks. Hardly have a minute with out terrible bone pain

all

> over my body. Vicodin ES does little to relieve it. I am on 20mg of

> prednisone for many years. They would really like me to be off it

or at

> atleast try to lower the dose.

>

> I am feeling very down with all this. My husband ot 43 years

suddenly

> began sobbing last week. He is very concerend that I will be may be

> doieing soon. I have been having problems with taken care of wiping

my

> because of the spine pain and stiffness.

>

> He's been a real trooper/ He had such a terrible look on his face

and

> just blurted out thatWiping my butt was not his favorite thing to

do

> but he knew that in the future he knew he would give anything to

still

> be wiping me.

>

> They are also telling us that I have very mild kidney failure.

> Friends I really need some support right now. Judy in burg

>

>

>

>

>

>

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

> Don't pick lemons.

> See all the new 2007 cars at Yahoo! Autos.

>

[Guest guest]

Kimber & Judy, I took oral Mtx for 2 years with no problems at all. Kimber, I'm surprised your liver function tests were abnormal; the big advantage of the shots is that the med bypasses your liver. How long were you on the pills before switching to shots? Dr. Baughman told me that when you reach a total dosage of 2 grams (at 15mg/week it would take about 2-1/2 yrs. to reach 2 grams (2000mg). I started out taking 25mg/wk, so I have reached it sooner.), that you need a liver biopsy to determine whether it's safe to continue the drug. He also stated that the liver function tests did not correlate well with the actual health of the liver, but he was referring to tests that were normal, when the liver was actually abnormal by biopsy. I don't know if would work the other way around, whether your results could be abnormal & the liver healthy. I guess a biopsy would answer that question. I know that I am very fortunate in being able to tolerate just about any drug with few or no side effects or complications. Comes in handy with all the stuff I'm taking. Good luck to you both with your battle against the sarc monster, and remember: The Force is with you!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: MethotrexateDate: Tue, 13 Feb 2007 08:56:34 -0000

They first put me on methotrexate pills.....they told me within the first 24-36 hours I could experience nausea and vomiting......well I think I made it to hour 24 and a minute or two when the vomiting started.......I was home alone, my husband at the time gone and my sister also gone.....I was so thankful for a rheum nurse practioner whom I had worked with but also worked with my dr at the time called me throughout the day to check on me and would have sent an ambulence if the meds hadn't resolved the vomiting........after that they put me on the injections which luckily I had less side effects too, but after about a month my liver functions had sky rocketed, ended up with a liver biopsy (so not fun...lol)Anyway after that they stopped it completely. Until I get some kind of insurance I just make due with pain meds and occasional steroids. I hope and pray that you don't have any of these side effects and that you get some much needed relief.Kimber Will I finely got my doc to order methotrexate. He ordered 7.5mg per > week.> > What has those who have taken it experienced? Is it hard on the stomach.> > Saw my hematologist today. I have been going for weekly Procrit and IV > iron. Since having the 23 surgeries on my knees due to post Op MRSA, I > was on Vancomycin and other IV Antibiotics. My bone marrow is damaged > from all the meds they used to treat my infection. Sometimes I was on 7 > ahtibiotics at a time.> > Seems like the MRSA is now controlled. I am off the IV meds but am on > PO Keflex for 1 year.> > I have had sarcoid since 1971. I have been having terrible pain for the > last six weeks. Hardly have a minute with out terrible bone pain all > over my body. Vicodin ES does little to relieve it. I am on 20mg of > prednisone for many years. They would really like me to be off it or at> atleast try to lower the dose.> > I am feeling very down with all this. My husband ot 43 years suddenly > began sobbing last week. He is very concerend that I will be may be > doieing soon. I have been having problems with taken care of wiping my> because of the spine pain and stiffness.> > He's been a real trooper/ He had such a terrible look on his face and > just blurted out thatWiping my butt was not his favorite thing to do > but he knew that in the future he knew he would give anything to still > be wiping me.> > They are also telling us that I have very mild kidney failure.> Friends I really need some support right now. Judy in burg > > > > > > > ---------------------------------> Don't pick lemons.> See all the new 2007 cars at Yahoo! Autos.>

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[Guest guest]

Judy,

I am

sorry to hear this, I will support you in my prayers, what a long road you’ve

had, and sounds like your husband is a great support, but even they wear out,

so will pray for both of you.

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From:

Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis

Sent: Monday, February 12, 2007

10:51 AM

To:

Neurosarcoidosis

Subject: Re:

Methotrexate

Judy I

don't know what to say except you and your husband will be in my prayers, and I

hope you get some good relief soon....Connie

Judy <rjbasso (AT) verizon (DOT) net>

wrote:

Will I finely got my doc

to order methotrexate. He ordered 7.5mg per

week.

What has those who have taken it experienced? Is it hard on the stomach.

Saw my hematologist today. I have been going for weekly Procrit and IV

iron. Since having the 23 surgeries on my knees due to post Op MRSA, I

was on Vancomycin and other IV Antibiotics. My bone marrow is damaged

from all the meds they used to treat my infection. Sometimes I was on 7

ahtibiotics at a time.

Seems like the MRSA is now controlled. I am off the IV meds but am on

PO Keflex for 1 year.

I have had sarcoid since 1971. I have been having terrible pain for the

last six weeks. Hardly have a minute with out terrible bone pain all

over my body. Vicodin ES does little to relieve it. I am on 20mg of

prednisone for many years. They would really like me to be off it or at

atleast try to lower the dose.

I am feeling very down with all this. My husband ot 43 years suddenly

began sobbing last week. He is very concerend that I will be may be

doieing soon. I have been having problems with taken care of wiping my

because of the spine pain and stiffness.

He's been a real trooper/ He had such a terrible look on his face and

just blurted out thatWiping my butt was not his favorite thing to do

but he knew that in the future he knew he would give anything to still

be wiping me.

They are also telling us that I have very mild kidney failure.

Friends I really need some support right now. Judy in burg

Don't pick lemons.

See all the new

2007 cars at Yahoo!

Autos.