Methotrexate

[Guest guest]

---

Hi Greg,

I know how you feel about your pain and suicide. Every three months

I think about it and I worry about my daughter and how she couldn't

live without me at the moment (she's 15). I tried to make it through

the physical and mental pain by taking hour by hour, day by day...I

try to think of things that make me happy. I've had so many

accidents in bed, on the way to the bathroom, etc. It isn't no

cakewalk that is for sure. I feel most of the time my life is

over...having to deal with this pain. I had my GP tell me yesterday

that I would be taking pain medication the rest of my life, a few

weeks ago my Dermy told me that I would have this P and PA the rest

of my life...what depression!! Why do we deserve this? Hang in

there you are not alone. I always say a pray when it gets really bad

and it seems to let up some...Fran was right about the ER-I have been

there several times and they gave me a pain shot to make it through

the night. Prays to you.

God Bless, Sue in Michigan.

In , " Greg " <skruff@p...>

wrote:

>

> MTX doesn't work at all for me until 40mg once a week. My docs have

forced me to reduce it to 25mg at the moment and I have P all over my

face and through my hair, shoulders and chest and back. I am not

sleeping at all because of the joint pain and have spent the last 3

weeks in agony barely getting out of bed to get to the toilet (in

fact, there have been times when I haven't made it!).

>

> The only alternative I have been given was prednisolone and that

gave me diabetes. It worked wonderfully. But now the diabetes

complicates my treatment for PA. My local doctor said re3cently, " No-

one ever died from joint pain, but they do die from kidney and liver

damage. " It just shows how very little he knows. The joint pain can

drive a person to suicide. My has the keys already.

>

> Greg.

[Guest guest]

Hi Greg,

My name is Tamara and I apologize, I am just now reading your initial

posting. I want you to know that you are a valuable person and that

you are worth fighting for. I had my only sister commit suicide at

the age of 20 by hanging herself. She was a wife and mother of 2

beautiful children. Suicide is never an answer to anything, even for

the chronic terrible pain you suffer. Please know that, and know

that I love you as a human being, we all do. Vent like crazy to us,

do whatever it takes, but do not allow yourself to give in to that

temptation. If you would like to write me off list, please do.

Sending lots of prayers your way,

Tamara

-- In , " Greg "

<skruff@p...> wrote:

>

> Thanks Fran. I am in Australia and here dermatologidtd don't treat

PA at all - only rheumatologists do and a good one is as rare as

hen's teeth.

>

> All those new drugs you mention ? Well, they are not available in

Australia. Enbrel has just been approved but can only be given to

people with RA who show more than a certain level of joint

deterioration. It is not allowed for PA at all.

>

> I have been told several times to just put up with it - which isn't

very helpful. I wish I could find a decent rheumy in Melbourne. The

only good one I know is in North Queensland - over 3000 km away.

>

> Thanks again. This group helps on the bad days - even if only to

know that I'm not the only one going through this.

>

> Greg.

>

[Guest guest]

Fran,

I would just like to send you a very gentle hug - your knowledge,

help, compassion and caring is wonderful. Not only are you a help

to Greg, but your caring and sound advice encompasses us all. I

will look forward to reading your posts in the future. You are such

a support.

Go Girl!

>

> Dear Greg, I'm sorry so many of the new drugs aren't available to

you in

> Australia. We tend to think what is available to us is available

to

> everyone and that's just not the case. If you don't have a good

> rheumatologist close by, then I would just keep searching for a

doctor who

> is either knowledgeable about PA, or pain control, or at the very

least a

> doctor who is willing to learn and work with you.

>

> I know my one condition, erythromelalgia, is extremely rare, and

very few

> doctors have heard of it, and even less know how to begin treating

it. I

> had to finally accept that I wasn't going to find a specialist in

this area

> unless I went to Mayo's. Now I'm happy if I have a doctor who is

willing to

> research the syndrome and try and help me with the burning pain.

As long

> as they are willing to help me, I'm willing to work with them too.

>

> Since pain is such a widespread problem, there has to be a good

doctor there

> for pain control. A lot of the time, a specialist is the way to

go, but if

> you find a doctor who is wiling to try and help, then that is half

the

> battle for me. I'd keep searching since your doctor doesn't seem

to want to

> try anything new at all. I hate to think of you getting so

depressed with

> the pain. I know how it can go from an bothersome problem to

completely

> taking over your life. Sometimes that can happen in a matter of

days or

> even hours. So don't give up on the doctors around you. There

still might

> be one in your area who could help more than your current doctor.

>

> I also would check out some pain sites in Australia and see if

they can

> recommend anyone in your area or at least somewhat close. I just

hate to

> leave you with no options but pain. No one can be that strong for

very

> long. Please take care of yourself and let me know if I can help

in anyway.

>

> You are right that you aren't alone belonging to this group. It

is a great

> compassionate and knowledgeable group, but you still need someone

locally on

> your side. Ok, enough of my lecturing. Take care and let me know

how you

> are doing. Love, Fran

[Guest guest]

Pain Management Clinics here tend to concentrate on alternative methods of pain

control. The one I went to last year tried to tell me I could control my pain by

exercise and meditation. I told them I couldn't walk so exercise was impossible

and that due to the MTX brain fog, concentration was extremely difficult so I

couldn't see how meditation was going to work. After that I was written off as a

" difficult patient " .

RE: [ ] Methotrexate

Dear Greg, I'm sorry so many of the new drugs aren't available to you in

Australia. We tend to think what is available to us is available to

everyone and that's just not the case. If you don't have a good

rheumatologist close by, then I would just keep searching for a doctor who

is either knowledgeable about PA, or pain control, or at the very least a

doctor who is willing to learn and work with you.

I know my one condition, erythromelalgia, is extremely rare, and very few

doctors have heard of it, and even less know how to begin treating it. I

had to finally accept that I wasn't going to find a specialist in this area

unless I went to Mayo's. Now I'm happy if I have a doctor who is willing to

research the syndrome and try and help me with the burning pain. As long

as they are willing to help me, I'm willing to work with them too.

Since pain is such a widespread problem, there has to be a good doctor there

for pain control. A lot of the time, a specialist is the way to go, but if

you find a doctor who is wiling to try and help, then that is half the

battle for me. I'd keep searching since your doctor doesn't seem to want to

try anything new at all. I hate to think of you getting so depressed with

the pain. I know how it can go from an bothersome problem to completely

taking over your life. Sometimes that can happen in a matter of days or

even hours. So don't give up on the doctors around you. There still might

be one in your area who could help more than your current doctor.

I also would check out some pain sites in Australia and see if they can

recommend anyone in your area or at least somewhat close. I just hate to

leave you with no options but pain. No one can be that strong for very

long. Please take care of yourself and let me know if I can help in anyway.

You are right that you aren't alone belonging to this group. It is a great

compassionate and knowledgeable group, but you still need someone locally on

your side. Ok, enough of my lecturing. Take care and let me know how you

are doing. Love, Fran

[Guest guest]

Dear Greg, that was just one pain clinic. I can see how you would get

frustrated and if I had a bad experience right off the bat, I might have

given up too. After I found my doctor, I still wasn't convinced he was

doing everything he could for me, so I interviewed a few others. That

really opened my eyes. They are all different just like all doctors and you

have to look until you find one that wants to help. First of all, all

patients are difficult when they are in pain. The main thing your doctor

wants to know is you want to get better. They don't want to just dope you

up and have you go home and turn into a vegetable. They want to know if

they medicate you that you are leading a productive life or at least trying

to get the most out of what you can each day.

I have always been willing to try anything my doctor suggested. When he

would mention something that I didn't really want to do, like be evaluated

by a counselor, I did it any way just to ease his mind. I took one of those

standardize tests and I guess I scored ok on it, because he never brought it

up again. They have to do certain things to protect themselves as well. I

do think that meditation can help pain. I do it as often as I can and find

it does calm me down and relaxes me, which in turn relaxes the muscles and

my pain. But and this is really important, your pain has to be controlled

to a certain degree or you can never even meditate. My pain doctor was

really aware of that and when I told him I couldn't do visualizations due to

the pain being so bad, he increased my drugs. Luckily, I haven't had to

raise my medication level in almost 3 years. I know if I get worse again,

he wouldn't just throw medication at me. He would try other things first

before he went to narcotics. They have to be used lowly and selectively or

everyone in the place would be taking the maximum amount.

I guess what I'm saying Greg, and I'm trying not to sound like a know it

all, and if I do, I really apologize. I think all pain clinics are

different and you have to keep looking until you find one where you fit in.

What do you have to lose, but your pain? When you consider the fact your

life isn't worth living like this, you have to keep trying everything to get

back in control. Believe me life is worth living. You have to find some

help and hold on. Just trust that they will help you and give it a chance.

I'm probably so paranoid about this because I lost my best friend of 30

years to pain almost 4 years ago this month. She has been on my mind more

lately than normal, and there aren't many days when I don't think of her. I

was the last person to talk to her that night and I've gone over it a 100

times trying to remember if I could have done anything different that might

have gotten through to her. Suicide doesn't end with just one person's

death. It goes on and on with the loved ones left behind who blame

themselves, each other and anyone else they can think of. Even though I

know she out of her pain now, I still wish she had stayed around a little

longer and tried a few more things to control her pain. But I know she was

worn out and sick of the world as well. You get that way day after day

dealing with chronic pain. So please Greg, keep looking for a doctor who

will help you. You have people who love you I'm sure and who don't want to

lose you. Don't give up. One clinic isn't enough to rule them all out. If

you had one bad date, would you rule out all women for the rest of your

life?..lol. Anyway, I hope you are feeling better and the pain isn't as bad

as it was yesterday. You are in my thoughts and prayers. Love, Fran

Re: [ ] Methotrexate

Pain Management Clinics here tend to concentrate on alternative methods of

pain control. The one I went to last year tried to tell me I could control

my pain by exercise and meditation. I told them I couldn't walk so exercise

was impossible and that due to the MTX brain fog, concentration was

extremely difficult so I couldn't see how meditation was going to work.

After that I was written off as a " difficult patient " .

[Guest guest]

Dear , thanks for the kind words. I try to just write the way I feel.

I hate to think of people in pain. I went through it too long myself and

think if someone had reached out to me earlier, I might not have suffered

for so long. Who knows, I might not have listened either...sometimes we

just have to learn all these lessons by ourselves. Believe me I have my

moments still, when life doesn't seem like a lot of fun. It's normally

after a few days of bad pain, hardly any sleep, and then something little

sets me off. I hate being depressed. I think pain is easier to deal with

than depression. I guess that's why I try to stay up so much.

I'm glad my emails help you even if only in some little way. Everyone helps

me that's for sure. That's what is great about this site. Everyone is

compassionate and caring and it shows in all the emails. Thanks for making

my day and hope you had a good day without any pain. Take care. Love, Fran

[ ] Re: Methotrexate

Fran,

I would just like to send you a very gentle hug - your knowledge,

help, compassion and caring is wonderful. Not only are you a help

to Greg, but your caring and sound advice encompasses us all. I

will look forward to reading your posts in the future. You are such

a support.

Go Girl!

[Guest guest]

Thank you Fran, for all your kind words and good advice. I have seen 9 different

rheumatologists. The current one prescribes drugs that my gp (primary care

doctor) won't allow me to have, and then goes crook when I keep asking her for

prescriptions.

I AM a difficult patient. I lost my wife to cancer just 2 years ago. She went

through hell for 5 years with the way the medical system treated her. I fought

like crazy to get her the right treatment when all the specialists wanted to do

was sit back and let her die and then be the one who wrote up this rare case in

the medical journals. I DO expect a specialist to know what they are talking

about. I expect a doctor to care about their patients. I expect the psychiatrist

to stay awake when counselling me for stress. I expect to be able to see my

specialist for repeat appointments within a reasonable timeframe and not have to

wait 7 months to get to see them again when they told me to come back in 6

weeks.

This week has been a difficult one. I have had to reduce all my medications

because my rheumatologist says she can't treat me unless she sees what my

condition is like without the medications. And then she cancels two appointments

without appreciating the fact that I am in agony just so she can see the extent

of my swelling etc.

I am angry with the world. I am grieving for the loss of my career, my wife, my

life. I feel like I am 100 years old on the bad days. I am sick of needing a

walking stick to walk. I am sick of the back pain using a walking stick causes.

Everything complicates something else. Well-meaning people say try glucosimine

(at $80 a month when I am living on $30 a week), try aqua aerobics at $25 a

session, try msn at $50 a month). My gp says I am overweight and need to

exercise. My rheumatologist says don't exercise because it puts too much strain

on my joints. It is all so very frustrating.

I am not considering suicide - just wishing for a better world.

Greg.

RE: [ ] Methotrexate

Dear Greg, that was just one pain clinic. I can see how you would get

frustrated and if I had a bad experience right off the bat, I might have

given up too. After I found my doctor, I still wasn't convinced he was

doing everything he could for me, so I interviewed a few others. That

really opened my eyes. They are all different just like all doctors and you

have to look until you find one that wants to help. First of all, all

patients are difficult when they are in pain. The main thing your doctor

wants to know is you want to get better. They don't want to just dope you

up and have you go home and turn into a vegetable. They want to know if

they medicate you that you are leading a productive life or at least trying

to get the most out of what you can each day.

I have always been willing to try anything my doctor suggested. When he

would mention something that I didn't really want to do, like be evaluated

by a counselor, I did it any way just to ease his mind. I took one of those

standardize tests and I guess I scored ok on it, because he never brought it

up again. They have to do certain things to protect themselves as well. I

do think that meditation can help pain. I do it as often as I can and find

it does calm me down and relaxes me, which in turn relaxes the muscles and

my pain. But and this is really important, your pain has to be controlled

to a certain degree or you can never even meditate. My pain doctor was

really aware of that and when I told him I couldn't do visualizations due to

the pain being so bad, he increased my drugs. Luckily, I haven't had to

raise my medication level in almost 3 years. I know if I get worse again,

he wouldn't just throw medication at me. He would try other things first

before he went to narcotics. They have to be used lowly and selectively or

everyone in the place would be taking the maximum amount.

I guess what I'm saying Greg, and I'm trying not to sound like a know it

all, and if I do, I really apologize. I think all pain clinics are

different and you have to keep looking until you find one where you fit in.

What do you have to lose, but your pain? When you consider the fact your

life isn't worth living like this, you have to keep trying everything to get

back in control. Believe me life is worth living. You have to find some

help and hold on. Just trust that they will help you and give it a chance.

I'm probably so paranoid about this because I lost my best friend of 30

years to pain almost 4 years ago this month. She has been on my mind more

lately than normal, and there aren't many days when I don't think of her. I

was the last person to talk to her that night and I've gone over it a 100

times trying to remember if I could have done anything different that might

have gotten through to her. Suicide doesn't end with just one person's

death. It goes on and on with the loved ones left behind who blame

themselves, each other and anyone else they can think of. Even though I

know she out of her pain now, I still wish she had stayed around a little

longer and tried a few more things to control her pain. But I know she was

worn out and sick of the world as well. You get that way day after day

dealing with chronic pain. So please Greg, keep looking for a doctor who

will help you. You have people who love you I'm sure and who don't want to

lose you. Don't give up. One clinic isn't enough to rule them all out. If

you had one bad date, would you rule out all women for the rest of your

life?..lol. Anyway, I hope you are feeling better and the pain isn't as bad

as it was yesterday. You are in my thoughts and prayers. Love, Fran

[Guest guest]

Dear Greg, No wonder you want a different and better world. I would too if

I were in your shoes. My heart really goes out to you, not that it will

help in any way to ease your pain or suffering. Anyone in your situation

would be a difficult patient. I'm so sorry about your wife. I agree that

the medical field does need to open their eyes and remember they got into

this to help people. (At least I hope that's why they are here.) When my

parents were dying from emphysema, I felt like we could never leave either

one of them alone in the hospital. it's crazy because the nurses are worked

too much and everyone is exhausted by the end of the day, that just getting

someone a drink of water is a big deal. So between my sister and I we never

let my mother or my father be alone anytime in the hospital. You just can't

count on someone else to take care of them, and if they aren't able to

communicate you have to be there for them. I'm sure you went through hell

with your wife.

All the things you mentioned in your letter about what you expect from a

doctor, I agree with. I know sometimes it isn't going to happen, but I do

agree with it. I would be upset this week too with what you are dealing

with. It takes a lot of courage to even go off your medication, let alone

have the doctor cancel two appointments on you. I'm sure you let them know

that you are without medication? I just don't get it sometimes. I know

that well meaning people do suggest things, and I've been doing the same

thing to you probably in my last few emails. It all boils down to the fact

that we just don't know how bad something or someone is until we walk in

someone else's shoes. I know when I list my problems people think I'm brave

or strong, but it's simply a matter of holding on and trying to survive the

ride.

Greg I don't know what your religious beliefs are and I won't tell you to go

to church or anything like that. If you are like me, that's one more place

that is too much to deal with every week. I don't consider myself a

religious person, but I do consider myself a very spiritual one. I do

believe that hell is what we go through here on earth. Some of us seem to

have a better view than others...lol. Seriously, though things have to be

better on the other side or what's the point of all this? When I get down

and can't find a reason to go on, I try and remember that God doesn't expect

me to succeed at everything put in front of me, he/she only expects me to

try. I know you are bitter and anyone would be in your situation. Have

you had PA long? You didn't mention your age or if you have children. I

hope you have family that still supports and cares for you. You need to

find a reason to keep on trying and keep on trying to get better. I

probably sound like a broken record by now.

I guess what I'm saying is so many times in life the big things let us down,

that the only healthy way to really live is take comfort in the little

things that we can count on. Like a sunset in the evening, or a smile from

your dog, or a comfortable chair or special pillow. I know that probably

sounds silly, but it gets me through the hard times, sometimes...

Everyone has their own problems. Yours seem huge to me and I wish there was

a way to lighten your load. Has anyone told you how long it will be before

Australia gets the new injectable drugs? So many people have had success

with those, I'm not one of them, but they still seem to be the way of the

future. You just have to have hope Greg. You can't let go of that, because

it makes you worse physically as well as mentally.

Keep on writing to me. You need to get it out as much as you can. I tell

you I would have kicked the psychiatrist who fell asleep on me...lol. I

have a great story on a psychiatrist, that I only saw 1 time...My pain

doctor wanted me to see someone because we had increased my drugs and

nothing had helped. ( Of course, we found out with time, that I still needed

one more increase to stop the pain, but he was worried I was going mental on

him I think...lol.) The doctor he wanted me to see was booked up for 6

weeks, and I knew he wanted me to see someone sooner, so he gave me the name

of another doctor, he " heard " was good. Talk about a jerk. He only had a

desk, his chair, and stool in his office for patients to sit on. Well at

the time, my back was bothering me and I told him, there was no way I could

be comfortable sitting on a stool for an hour visit. He proceeded to tell

me (remember I'm seeing him due to my pain) that all of his " customers " ,

which was a strange thing to call his patients, did just fine on the stool.

I repeated that it wouldn't work for me and asked him if he had another

chair. He just kept saying no. Finally he told me I could lie on the floor

if I wanted too, it wouldn't " bother him " . I don't know about you, but

getting up and down off the floor is pretty rough and impossible for me. I

just laughed and said forget it. I lasted on the stool for another 15

minutes, went home, called my doctor and told him what had happened.

Needless to say, I got into to see the other doctor and he told me I was

fine. I haven't had to go back, but at times I still wonder if that other

jerk has patients lying on the floor in his office now....So I guess it

takes all kinds.

You are still here for some reason Greg, as hard as it is to figure out.

Write me anytime and I'll be thinking of you tonight. I wish you a pain

free evening and something comforting to heal your wounds. Take care of

yourself and keep in touch. I wish I could do more. Love, Fran

--Original Message-----

From: Greg [mailto:skruff@...]

Sent: Wednesday, November 17, 2004 10:14 AM

Subject: Re: [ ] Methotrexate

Thank you Fran, for all your kind words and good advice. I have seen 9

different rheumatologists. The current one prescribes drugs that my gp

(primary care doctor) won't allow me to have, and then goes crook when I

keep asking her for prescriptions.

I AM a difficult patient. I lost my wife to cancer just 2 years ago. She

went through hell for 5 years with the way the medical system treated her. I

fought like crazy to get her the right treatment when all the specialists

wanted to do was sit back and let her die and then be the one who wrote up

this rare case in the medical journals. I DO expect a specialist to know

what they are talking about. I expect a doctor to care about their patients.

I expect the psychiatrist to stay awake when counselling me for stress. I

expect to be able to see my specialist for repeat appointments within a

reasonable timeframe and not have to wait 7 months to get to see them again

when they told me to come back in 6 weeks.

This week has been a difficult one. I have had to reduce all my

medications because my rheumatologist says she can't treat me unless she

sees what my condition is like without the medications. And then she cancels

two appointments without appreciating the fact that I am in agony just so

she can see the extent of my swelling etc.

I am angry with the world. I am grieving for the loss of my career, my

wife, my life. I feel like I am 100 years old on the bad days. I am sick of

needing a walking stick to walk. I am sick of the back pain using a walking

stick causes. Everything complicates something else. Well-meaning people say

try glucosimine (at $80 a month when I am living on $30 a week), try aqua

aerobics at $25 a session, try msn at $50 a month). My gp says I am

overweight and need to exercise. My rheumatologist says don't exercise

because it puts too much strain on my joints. It is all so very frustrating.

I am not considering suicide - just wishing for a better world.

Greg.

[Guest guest]

Dear Greg,

My heart goes out to you... I am so sorry for all that you have

suffered, and how bleak things are for you right now. I am so sorry

about your wife. None of us can imagine unless we have been there.

Here in Vancouver they have a rehab hospital (completely covered by

medicare) which has an arthritis dept. where I stayed for 7 weeks

last year. Each of us had one-on-one care with physiotherapists,

occupational therapists, counsellors, education classes, relaxation

classes, hydrotherapy, group meetings 1/week with all the

professionals (including rheumy) and the patient to go over

everything that happened the week before, etc. Is there anything

like that in Australia? It made a huge difference in my day to day

living and I consider it was one of the luckiest things that has

happened since I developed pa.

I sincerely hope that those who have offered assistance in the last

few days will result in something positive happening to help you.

Please never worry about 'complaining'. That's what we are all here

for and on any given day it could any one of us letting off steam at

the unfairness of it all.

I hope things get better for you soon. You are in my thoughts and

prayers.

>

> Thank you Fran, for all your kind words and good advice. I have

seen 9 different rheumatologists. The current one prescribes drugs

that my gp (primary care doctor) won't allow me to have, and then

goes crook when I keep asking her for prescriptions.

>

> I AM a difficult patient. I lost my wife to cancer just 2 years

ago. She went through hell for 5 years with the way the medical

system treated her. I fought like crazy to get her the right

treatment when all the specialists wanted to do was sit back and let

her die and then be the one who wrote up this rare case in the

medical journals. I DO expect a specialist to know what they are

talking about. I expect a doctor to care about their patients. I

expect the psychiatrist to stay awake when counselling me for

stress. I expect to be able to see my specialist for repeat

appointments within a reasonable timeframe and not have to wait 7

months to get to see them again when they told me to come back in 6

weeks.

>

> This week has been a difficult one. I have had to reduce all my

medications because my rheumatologist says she can't treat me unless

she sees what my condition is like without the medications. And then

she cancels two appointments without appreciating the fact that I am

in agony just so she can see the extent of my swelling etc.

>

> I am angry with the world. I am grieving for the loss of my

career, my wife, my life. I feel like I am 100 years old on the bad

days. I am sick of needing a walking stick to walk. I am sick of the

back pain using a walking stick causes. Everything complicates

something else. Well-meaning people say try glucosimine (at $80 a

month when I am living on $30 a week), try aqua aerobics at $25 a

session, try msn at $50 a month). My gp says I am overweight and

need to exercise. My rheumatologist says don't exercise because it

puts too much strain on my joints. It is all so very frustrating.

>

> I am not considering suicide - just wishing for a better world.

>

> Greg.

>

[Guest guest]

Hi Chuck,

I've been up and down from 20mg to 25 mg the last year on

Methotrexate. I have not experienced any hair loss yet. I'm don't

think we will at the dosage we take for PA. You didn't say if you

were taking pills or doing the injections? I have only taking the

pill form. The only side affects I had were a tinny taste in my mouth

and what felt like a sinus headache the day after taking it. Both did

go away with time and I really have no side affects now. Good luck to

you.

Steve

>

> I'm sure someone has asked this question before so please forgive

the

> repetition.

>

>

>

> My dosage of methotrexate has gone up from 10 mg each week to 20

mg. What

> are the most common side effects people experience at this level?

>

>

>

> Without warning my health insurance company recently cut back on

the number

> of Humira treatments they are willing to pay for. My doctor

increased the

> methotrexate to help compensate while we fight to get back all the

needed

> Humira treatments.

>

>

>

> One of the listed side effects is hair loss. Does that actually

happen at

> 20 mg or is that only at higher dosages?

>

>

>

> Any feedback people have would be appreciated.

>

>

>

> Best wishes,

>

>

>

> CC

>

>

>

> ****

>

> Chuck Currie

>

> 233 Spring Avenue

>

> Webster Groves, MO 63119

>

> 314-963-0496

>

> <http://www.chuckandliz.com> www.chuckandliz.com

>

>

>

>

>

>

[Guest guest]

hello all.

> Here in Vancouver they have a rehab hospital (completely covered by

> medicare) which has an arthritis dept. where I stayed for 7 weeks

> last year. Each of us had one-on-one care with physiotherapists,

> occupational therapists, counsellors, education classes, relaxation

> classes, hydrotherapy, group meetings 1/week with all the

> professionals (including rheumy) and the patient to go over

> everything that happened the week before, etc. Is there anything

> like that in Australia?

as far as i am aware, there's nothing like that here. i thought our

system was awesome, but i guess every system is poor somehow.

personally, i can't afford to see a rhumy privately any longer, so i

am waiting _four months_ so i can see one in the public system.

it makes me really rather scared that i have to live for the next four

months like i am. i am so sick. so, so sick. i am 29. i've been with

this disease for 24 years. i am so tired from life.

alana x

http://jonze.org/

[Guest guest]

Thank you, . If there is such a thing here, I have never heard of it. My

rheumatologist said she would refer me to the public hospital for physiotherapy.

As far as I know she has not done it. But then again, she may have done the

referral but I am on a 5 year waiting list or similar.

I saw my diabetes specialist this afternoon and it's official. I have won the

gold medal and must proceed to injecting myself with insulin. But I get to keep

taking all the tablets as well. And the good news is - insulin makes you gain

weight ! YAAAAAAYYYY !!!

Just trying to keep my chin up.

Greg.

[ ] Re: Methotrexate

Dear Greg,

My heart goes out to you... I am so sorry for all that you have

suffered, and how bleak things are for you right now. I am so sorry

about your wife. None of us can imagine unless we have been there.

Here in Vancouver they have a rehab hospital (completely covered by

medicare) which has an arthritis dept. where I stayed for 7 weeks

last year. Each of us had one-on-one care with physiotherapists,

occupational therapists, counsellors, education classes, relaxation

classes, hydrotherapy, group meetings 1/week with all the

professionals (including rheumy) and the patient to go over

everything that happened the week before, etc. Is there anything

like that in Australia? It made a huge difference in my day to day

living and I consider it was one of the luckiest things that has

happened since I developed pa.

I sincerely hope that those who have offered assistance in the last

few days will result in something positive happening to help you.

Please never worry about 'complaining'. That's what we are all here

for and on any given day it could any one of us letting off steam at

the unfairness of it all.

I hope things get better for you soon. You are in my thoughts and

prayers.

[Guest guest]

In a message dated 11/17/2004 9:16:38 PM Eastern Standard Time,

skruff@... writes:

try aqua aerobics at $25 a session,

Hi Greg, I can't remember if you are in the US, but if you are, you might

want to try to find a YMCA...membership cost there is based on your ability to

pay, so they are very flexible and you could get into a warm pool probably for

next to nothing. Most of them to water arthritis classes.

Sorry that you are having such a rough time of it.

[Guest guest]

Hi Fran and Greg,

Fran you said everything I would want to say in your note to Greg.

Greg, I hope with all my heart that you see your dr soon so that you

can go back on your meds. I am so sorry for the loss of your wife,

but I hope you know you have support and friendship here with all of

us. I know just having people who understand, can sometimes ease

frustration and lonliness. Vent anytime you need, that'a why we are

all here. We all give and take at different times, and this is the

most nonjudgemental place to do it. We will keep you in our prayers,

Pat

[Guest guest]

Dear Alana,

I'm so sorry for the suffering you are going through... and it makes

me realize just how fortunate i have been with my rheumy and

treatment. no many people here in vancouver even know about it -

chrystal (turrell lamere) who is also in vancouver didn't know about

it until another person on this and the other board put her in

contact with me. many rheumy's i guess don't have doctor rights at

the hospital. i'm just lucky.

i get the sense you are in the states. does your city - or nearest

large one - have an arthritis society that might be of assistance?

here in canada we do have that ability and as well, we can select any

doctor we want and everything is covered under our medicare system

for which we pay a stipend each month for coverage. not a perfect

system though, not by a long shot. waiting lists for surgery are

long in canada and that is definitely a bummer.

as for waiting 4 months, is there any other avenue you could take,

like the american arthritis society - perhaps try surfing the net for

some sort of organization near where you live that can help....

wish i could offer more substantive options to you. you are way too

young to be going through this...

big hug, dear.

karen

ps - fingers/knuckles very sore today hence lower case...

>

>

> hello all.

>

> > Here in Vancouver they have a rehab hospital (completely covered

by

> > medicare) which has an arthritis dept. where I stayed for 7 weeks

> > last year. Each of us had one-on-one care with physiotherapists,

> > occupational therapists, counsellors, education classes,

relaxation

> > classes, hydrotherapy, group meetings 1/week with all the

> > professionals (including rheumy) and the patient to go over

> > everything that happened the week before, etc. Is there anything

> > like that in Australia?

>

> as far as i am aware, there's nothing like that here. i thought our

> system was awesome, but i guess every system is poor somehow.

> personally, i can't afford to see a rhumy privately any longer, so i

> am waiting _four months_ so i can see one in the public system.

>

> it makes me really rather scared that i have to live for the next

four

> months like i am. i am so sick. so, so sick. i am 29. i've been with

> this disease for 24 years. i am so tired from life.

>

> alana x

>

> http://jonze.org/

[Guest guest]

Dear Greg,

I believe it may be time to phone your rheumy's secretary and start

bugging them about the physio referral. darn it, you need it and to

heck with your self-opinion you are a rotten patient - with what you

are putting up with you'd have to be a saint not to be. i'd just bug

the heck out of them until i got the service.... it will really

help... also, can you be referred to an occupational therapist? i

have loverly leather splints for both my wrists as well as a thumb

splint for my right thumb which is now a lovely swan.... after

being in the hosp an O/T came to both my homes and looked them over

and recommended numerous modalities (like raised toilet, electronic

hoist for the tub, blocks to raise my sofas, etc.) and along with a

prescription from my rheumy i can submit the rx to my insurance

company to get these things. i haven't gone there yet, but if things

get worse it is comforting to know i have these options. i would

highly recommend trying to get a referral to an occupational

therapist.

karen

>

> Thank you, . If there is such a thing here, I have never heard

of it. My rheumatologist said she would refer me to the public

hospital for physiotherapy. As far as I know she has not done it. But

then again, she may have done the referral but I am on a 5 year

waiting list or similar.

>

> I saw my diabetes specialist this afternoon and it's official. I

have won the gold medal and must proceed to injecting myself with

insulin. But I get to keep taking all the tablets as well. And the

good news is - insulin makes you gain weight ! YAAAAAAYYYY !!!

>

> Just trying to keep my chin up.

>

> Greg.

[Guest guest]

Thank you, Pat and to everyone else who has written. Your support and

encouragement means a great deal.

Greg.

[ ] Re: Methotrexate

Hi Fran and Greg,

Fran you said everything I would want to say in your note to Greg.

Greg, I hope with all my heart that you see your dr soon so that you

can go back on your meds. I am so sorry for the loss of your wife,

but I hope you know you have support and friendship here with all of

us. I know just having people who understand, can sometimes ease

frustration and lonliness. Vent anytime you need, that'a why we are

all here. We all give and take at different times, and this is the

most nonjudgemental place to do it. We will keep you in our prayers,

Pat

[Guest guest]

In a message dated 11/17/2004 9:16:24 PM Eastern Standard Time,

skruff@... writes:

I am angry with the world. I am grieving for the loss of my career, my wife,

my life. I feel like I am 100 years old on the bad days. I am sick of

needing a walking stick to walk. I am sick of the back pain using a walking

stick

causes. Everything complicates something else. Well-meaning people say try

glucosimine (at $80 a month when I am living on $30 a week), try aqua aerobics

at $25 a session, try msn at $50 a month). My gp says I am overweight and need

to exercise. My rheumatologist says don't exercise because it puts too much

strain on my joints. It is all so very frustrating.

I am not considering suicide - just wishing for a better world.

Greg.

HI Greg,

Your story is so meaningful to me since I often feel very low myself. I am

so sorry for the loss of your wife. I sometimes think that life is not worth

living but then look for the things out there to be appreciative of. The

main thing for me is my children. I am also sick of people telling me to take

this, lose weight , start walking more, etc. These people are not in our

shoes and don't realize that even a few steps without pain would be

appreciated. Then I get the ones who tell me to stop taking all the meds and

I will

probably feel better.

I really feel for you but you should try to find something to make you

happy and build on it. If you do not have children, then maybe a pet of some

kind. Just hang in there and vent to us whenever you want. We are here for

you.

Janet

[Guest guest]

Hey, I couldn't take the regular methotrexate in pill form either, but my dr

talked me into trying a new version called Rheumatrex which I can tolerate.

Its easier on the stomach. I am slowly upping my dose because I reacted so

badly on the other pill form. I'm up to six pills, still not a large dose but

absolutely NO side effects. Might want to look into it if you haven't already.

I've done the shots and after a year and 1/2 couldn't poke myself anymore.

Got sick just thinking about it. So switched to Immuran (azathioprene) then

and it worked fairly well with a few side effects but I needed more. But now

I'm weaning off of the immuran mostly because I need help with the uveitis. The

metho put me into remission the last time I was on it for 6 months and took

care of the uveitis. I'm looking forward to that. So far the eye has been

quiet for a whole month after a year of flaring.

Well hope some of this helps. Take care and God Bless. Kathy from WI

[Guest guest]

Meg, there was a distribution problem with injectable Methotrexate with the

preservative in it. My doctor suggested we get the 4 mil liter vial (without

preservatives)...and refrigerate it after use. We didn't want to throw away good

medicine...either. And it is more expensive this way. They are doing this at

the Drs. office. I take such a low dose of it...so it lasts me about 10 weeks.

(I'm on Humira, too.) The pharmacists said they should be getting in new

shipments of the preservative one in less than three months. We've been doing

this

for about a month or so...and haven't had any ill effects from it. My best,

Connie (granny) AS/IBD/uveitis/glaucoma

[Guest guest]

Thanks for your responses on the methotrexate. I've tried the

Rhuematrex, Kathy, and that was what made me so sick :-( and I've been

the Imuran route too. But I have a appointment on Tues with the rhuemmy

(it always helps to look at the calander, doesn't it? I thought it was

at least 2 weeks away) so I will ask her about the idea of refrigerating

the vials. Thanks, Connie!

Meg

[Guest guest]

Hi Meg,

I'm curious, where in SE Michigan do you live? I live in Clawson, I buy my

injectible Methotrexate at the Kroger store in Royal Oak. Small world.. Harv

, Reiter's 25 years.

[Guest guest]

Dear Ann,

If the methotrexate didn't improve the joint that you were having the most

trouble with it isn't working. Why were you seeing the doc on a weekly

basis? Were you giving your own shots? I think it is time for you to start

thinking about a new rheumatologist. Does she order any blood work? The

usual things ordered for just monitoring drug side effects are a cbc, liver

functions and kidney functions. To check for inflammation a sed rate or crp

test should be done also. These should be done at least every three months

if not oftener. I know in the beginning of finding a medicine that worked I

went through a lot of meds. It is a trial and error to find a med or

combination of meds that work for you. To stay on a med for 2 years when it

is not improving what hurts you is too long. I would certainly complain and

make sure something else is added or changed. Good luck from one Anne to

another.

Cheers Anne

I've been diagnosed with PA for two years, and have been on

Methotrexate injections 4 cc a week. How do I know it is working? I

only had a small patch of the skin manifestation of psoriasis (which

made things harder to diagnose). The arthritis is mainly in my ankle

which is always swollen and painful. I thought the MTX was to keep

the disease from spreading to other joints, since it never seemed to

improve the ankle. Now I am having problems with my hips (which I

thought maybe was cause I walk funny) -

Additionally I am really disheartened, because when I saw my

Rheumatologist last week, she actually asked me WHY I was limping. I

mean, I've been limping for the last 2-1/2 years. It was like she

had no recollection as to why I had been coming to her office up to

four times a month for the past 2 years. (I resisted saying that I

actually don't just come to the office give her a check).

How would it be measured if the Methotrexate was working or not? Are

there lab tests? Should I have received relief from the pain,

fatigue, etc from Methotrexate? Any answers would be appreciated.

Thanks!

Ann in Florida

------------------------

[Guest guest]

Hi Ann,

If you've been on MTX for 2 years and are still in a great deal of pain and

are seeing a lot of new joint problems, the MTX is NOT working. Perhaps it

is time to find a new rheumatologist since this one seems indifferent to your

plight. I do not understand why you had to go to her office 4 times a month

unless her staff gives you an injection - but by now you should have learned

how to self-inject (many people here inject MTX, Enbrel, Humira, etc on their

own) or have a friend or relative help you with it.

If your current medication is not working, your rheumy should be putting you

on something else. You should demand it - it is YOUR care and you have a

great deal of say as to how you are treated and if this doctor won't do it,

there are others who will treat you aggressively and respectfully.

Wishing you wellness,

Kathy F.

In a message dated 2/2/2005 6:08:11 AM Eastern Standard Time,

annemills@... writes:

I've been diagnosed with PA for two years, and have been on

Methotrexate injections 4 cc a week. How do I know it is working? I

only had a small patch of the skin manifestation of psoriasis (which

made things harder to diagnose). The arthritis is mainly in my ankle

which is always swollen and painful. I thought the MTX was to keep

the disease from spreading to other joints, since it never seemed to

improve the ankle. Now I am having problems with my hips (which I

thought maybe was cause I walk funny) -

Additionally I am really disheartened, because when I saw my

Rheumatologist last week, she actually asked me WHY I was limping. I

mean, I've been limping for the last 2-1/2 years. It was like she

had no recollection as to why I had been coming to her office up to

four times a month for the past 2 years. (I resisted saying that I

actually don't just come to the office give her a check).

How would it be measured if the Methotrexate was working or not? Are

there lab tests? Should I have received relief from the pain,

fatigue, etc from Methotrexate? Any answers would be appreciated.

Thanks!

Ann in Florida

[Guest guest]

Hi Ann,

I'm sorry to hear about your experience with your rheumy. Dont feel bad, I've

been there before, I once had to insist with my rheumy that I had spinal

involvement with my PA, she finally looked back in my file and said " Oh yes,

right you do " . I think those doctor's get so overloaded with people that they

sometimes confuse or mix up their patients history. I've finally found a good

rheumy but I've been there, I've seen my share of insensitive specialists.

You're so not alone on that!

As for the methotrexate, I've been on it since July 2004 and I too have wondered

the exact same thing you have. As my problems seem to be progressing and my P

began to clear but came back with a vengance. The PA is as active as ever,

including ankle progression. My rheumy agreed it wasn't helping but in order to

try other drugs you must put up with the metho treatment for a good year. (or at

least in my situation). Like you, I have ankle symptoms. I have ankle synovitis

and have already had cortizone injection into the joint which helped for 2

months then back came the swelling and pain. Have you had a cortizone shot in

the joint? My rheumy doesn't like doing them and now believes I should have an

ankle arthrosis as the pain and swelling isn't going away. Maybe you should look

into that, I hear fusion of the ankle relieves all pain and swelling - of course

once healed from surgery. I'm currently going through that process, being

referred to a surgeon. Since you've been on metho for

sometime, maybe you could be considered for Enbrel, I hear this helps PA

sufferers greatly! It's worth asking or looking into it.

I also wanted to let you know that with PA , sacroiliitis can happen. It's

inflammation in your SI joints. Although you're right you could just be

experiencing pain because of the walking funny due to your ankle. Were does the

pain radiate? Do you have problems climbing stairs? Morning stiffness? You may

want to ask for an X-ray of your SI joints or a bone scan, these tests can help

monitor the progression of your arthritis.

I hope I've helped answer your questions. Feel free to write me anytime. B

ann_weekley <ann_weekley@...> wrote:

I've been diagnosed with PA for two years, and have been on

Methotrexate injections 4 cc a week. How do I know it is working? I

only had a small patch of the skin manifestation of psoriasis (which

made things harder to diagnose). The arthritis is mainly in my ankle

which is always swollen and painful. I thought the MTX was to keep

the disease from spreading to other joints, since it never seemed to

improve the ankle. Now I am having problems with my hips (which I

thought maybe was cause I walk funny) -

Additionally I am really disheartened, because when I saw my

Rheumatologist last week, she actually asked me WHY I was limping. I

mean, I've been limping for the last 2-1/2 years. It was like she

had no recollection as to why I had been coming to her office up to

four times a month for the past 2 years. (I resisted saying that I

actually don't just come to the office give her a check).

How would it be measured if the Methotrexate was working or not? Are

there lab tests? Should I have received relief from the pain,

fatigue, etc from Methotrexate? Any answers would be appreciated.

Thanks!

Ann in Florida