Methotextrate | Arthritis Information

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Dear All

We have been talking about Methotextrate in various threads.

I thought you might like to know that on the PMR&GCA Northeast Support website under Our Stories, the one by Margaret W (PMR Patient) has been updated. Margaret W has written about her experience "A Year with Methotextrate".

There is also a place on this website we use which has information about metho and there is also a discussion forum like ours on PMR.

http://www.patient.co.uk/medicine/Methotrexate.htm

Just remember, Metho is not a cure - just like Pred is not.

But, as the old adage says, knowledge is power and it helps if you know more than you ever wanted to.
Thanks mrs UK.
I'm seriously thinking about taking mtx. My main concern all along has been the side effects, which sound pretty devastating. I had a conversation with an old family friend who has been taking it for 25 years for rheumatoid arthritis, with no problems at all, apparently.  She said that it has "given her life back to her".  Of course--RA is a totally different animal from PMR, so I still just don't know if it will work for me.
And I also am thinking about the concern that perhaps the pharmaceutical companies are promoting its use for PMR to help their profits.
My rheumy is anxious for me to taper off pred and I know my body just isn't ready to do it without help from mtx-- if indeed it will help. And even if I do take mtx and taper off the pred, how will I know when the PMR inflammation is gone if I am taking a drug that reduces inflammation, but doesn't cure it ? Maybe I'm trying to think too far ahead, but I really wonder if the risks of taking mtx are worth it.
freesia

One question, why is your Rheumy so anxious to get you off pred?

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Hi mrs UK,
I think my rheumy is anxious to get me off pred because I don't (and won't) take the bisphosphonate medications like Fosamax for bone loss, and I already had osteopenia before I got PMR.  Actually--I need to ask her why--  no use playing a guessing game.  If that is the reason, of course I appreciate her concern for my bone density.

It really makes me wonder if she understands how hard it is to taper off the prednisone, and the crippling pain of this disease. Previously, when my blood test results for the sed rate were normal, she wanted me to reduce the pred by 1 mg every two weeks, provided the muscle pain didn't return.  Judging from the experiences I've read here, and also from my attempt to taper, that is way too fast.

freesia
freesia2010-08-21 10:43:21HI Freesia,

Another question - why WON'T you take the alendronic acid? I don't take it at the moment - but if the dexa scan I will have in November shows loss of bone density I am prepared to take it for a while. The recommendations from some experts (not the drug company) is that it should be used intermittently and for not more than 5 years consistently - so, since my bone density was fine before steroids (slap bang in the middle of the normal range) I saw no real reason to take it until I needed to. I do hold an open mind though. Someone has pointed out that in taking the alendronic acid you are taking something to protect against something that MIGHT happen - unless the bone density is way down, that is. So I'm not prepared to take it prophylactically to boost Big Pharma's profits but I'll reconsider.
 
However - I've said this before: what is the point of being an absolute invalid and in constant pain  because you or your doctor says "no steroids because of the bone density issue". And that's basically what it means - you're not able to do anything as a result, and are, in fact, at a higher risk of falling and breaking your hip or something else because of the stiffness and pain.  Your doctor needs to "sell" her treatment - I'd want it all justified, but that's me.
 
And I'd definitely agree that 1mg every 2 weeks is absolutely not on for someone with PMR.  A group did some tests for younger, relatively healthy people to feel what it was like to be old. They had a sort of suit which replicated the stiff joints - no way to add our pain without steroids though. The people who tried it were horrified at what it felt like. And this lack of understanding is one of the big problems I think.
 
MrsE
[QUOTE=MrsE]HI Freesia, Hi freesia,
Re your last paragraph: with you all the way -I did them all so they couldn't say it to my face! It hurt like **ll but at least they knew it wasn't due to lack of moving and I was doign all I could!
 
Have I explained the "making bone" bit of alendronic acid in the simplest way possible? It is absorbed onto your bone surface and then "attracts" the calcium which covers it. Once the calcium has covered the surface the attraction effect stops so you need to take more alendronic acid to continue the action. The crystal structure is a bit different and in some people the bone seems less strong but it does vary. Also, nothing is really known about the very long term effect with the bone.
 
There are other medications that have a similar effect - stontium salts can be used and NASA used them at one time for astronauts to prevent the bone loss they suffer in space. There was a bit of discussion about that a few months back. They cost more - that's why they aren't used so much but there is plenty of evidence about their effect and are approved in Britain for patients who cannot use the alendronic acid because of the gastric effects.
 
I think they are worth trying to see if you can tolerate them - use them strictly in accordance with the instructions, take them in the morning with a glass of tap water, on an empty stomach and stay upright for 3/4 of an hour before doing anything else - no bending, no lying down, no food or drink other than plain tap water.  But I'm not enthusiastic either although there are lots of people who do do well with them.
 
MrsUK is on an HRT replacement therapy which seems to have successfully stopped her bone loss despite years of a high-ish dose of steroids. This makes me think the bone loss is due to a combination of things and dealing with any one of them will be helpful. I used to take Premarin at one time and found it very user-friendly but HRT also has its detractors. It all seems to be a matter of trial and error for us all, patients and professionals. Who knows?
 
good luck with the rheumy,
MrsE
PS - forgot to mention - alendronic acid is also available as an infusion, given monthly or 6-monthly depending on the brand. No gut problems!!
MrsE
Fressia,

I was wondering the same thing.  Fosamax (or equiv) is good when you're losing some bone density.  I'm not taking it yet, but am prepared to if I need to.

Here's a story I'd like to share...

My mother-in-law, who is now 85 was in an auto accident about 8 or 10 years ago (sitting in passenger seat). It wasn't major but bad enough that the air bag went off. The air bag broke her right arm in 3 places where she had to get surgery to have rods inserted. She did not know at the time that she had osteoporosis. To this day she can hardly move her arm.  I think they call that a 'frozen shoulder'.  She now takes Fosamax once per week and her density tests have stabilized.  She has a very weak stomach, but she doesn't seem to have any trouble with Fosamax. She takes it first thing on Monday mornings - then nothing else in her stomach for 30 minutes (she even sets a timer to be sure).

Of course it's always your decision on what to take, but it could be a big help when needed.  Thanks, RickF, for that information about your mother-in-law.  What an awful way to find out that one has osteoporosis.....I'm glad the Fosamax has helped her.
Also good to know that someone with a weak stomach can handle the Fosamax.  My mother tried to take it years ago, but it really irritated her esophagus or stomach--I'm not sure which.

freesia
hi MrsE,
Your post has so much useful information, as always! thanks! Didn't see it until just now.

Good for you if you tried to do all those activities even with the pain! I rode a stationary bike for years and have continued to do that, although some days it's physically painful to get on it. 

I appreciate your explanation of how alendronic acid makes bone.   I've heard that this process actually makes bone that is more easily broken than osteo bone--however, my primary care doctor told me "not in all cases".  I guess it would be worth a try. My rheumy says that any amount over 2.5 mg per day of prednisone causes bone loss, and I'm at 9.5 mg per day now.

It seems as if lack of estrogen, for women, is a major contributor to bone loss. I did try HRT once, about 13 years ago, to help prevent bone loss, but it gave me migraines...not good! So I discontinued it.  Some people seem to thrive on it. We are all different !

Thanks for your good wishes!
freesia

Update on methotrexate: I saw my rheumy today to discuss methotrexate once again.  She  thinks in my case it will help me taper off the prednisone--I decided it can't hurt to try it.  If my body doesn't like it I can stop taking it. 

Along with the prescription for methotrexate, my rheumy gave me a prescription for 1 mg folic acid tablets to help prevent the mouth sores that could be a side effect.
 
So I took my first dose of mtx tonight.  I feel like I'm waiting for something awful --or good--to happen!! lol So how did it go with the MTX?  Hope you didn't get any nausea or fatigue from it.  I've been on it for a couple of months now and haven't had any problems and my blood tests for liver function have been normal. 
 
I also take folic acid 1mg daily.  I never thought I'd have to use a pill box like the older folks do to organize my meds when I was only 53 years old.  That pill organizer makes me feel old.
 
I did inform my rheumy that I haven't seen any changes since taking the MTX but she still wants me on it.
Hi russellcat,
So far I think I'm okay with the mtx. No nausea or fatigue but it's only been 4 days since I started it! I also take 1 mg folic acid every day.  I am having a frightened moment here and there when I feel "funny" and wonder if it's beneficial to be taking two medications that reduce my immune system.

I know what you mean about all these pills, and having to use a pill organizer.  You are young to need one! I still haven't figured out a way to organize my meds.

If the mtx isn't helping you, I wonder why your rheumy wants you on it? I hope I don't sound like I am anti-doctors or a complainer. I really don't believe I am.  But sometimes I feel as if they don't want us to listen to our own bodies, or believe that having lived in this body for 63 years, I might possibly know what is best for it.  My rheumy has great hope that the mtx is going to help me, but then--she also didn't think I'd have to be on pred for very long, that I'd be able to taper quickly. 

Anyway, it's so good to hear that your blood tests have been normal! That is really encouraging. You may have mentioned in another thread, but I'll ask anyway: has the mtx helped get you to the point where you can taper the pred? You say you haven't noticed any difference, or any changes, but just thought I'd ask. Thanks.

freesia
freesia2010-08-28 10:37:09Another update on my mtx adventure: I had my second dose Tues night, and Wed afternoon and evening I felt a teeny bit nauseous--not a lot but just enough that I wondered "uh oh, is this developing into something?" However, it subsided and I feel okay.

I'm wondering, since it takes a while for any benefits of mtx to "kick in" , maybe the nausea or other side effects also don't occur until it builds up in one's system for awhile?

I did forget to mention that I started getting  itchy in some areas of my upper body after my first dose. I had an apptmt with my primary care doc and she said she thought it was yeast because my immune system is down a bit and we'd been having some days of hot weather which made it hard to keep sweaty areas dry. It's not really anything I can't live with, honestly it's not bad, but I hope it goes away, of course. My doctor prescribed a cream, Nystatin.

freesia


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