How long have you taken Methotrexate?

After being diagnosed with diffuse systemic scleroderma my Rheum recommended Methotrexate. She said that it would stop the progression of the disease. She said that once I started to experience a symptom from the disease there is no reversing or erasing it, if that makes sense. It only took me two weeks to decide to start the meds. I wanted to stay as normal as I could for as long as I could. I have been taking Methotrexate along with Folic Acid for 10 months now. I am curious about others that take this medication. Has it indeed stopped the progression of your disease? And what is the length of time that you have been taking it? What have you seen as any positives or negatives of the medication?

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What she meant is the doctor can't really do much to change what the disease has already done. The tissue may soften up but the damage is still there.

Methotrexate is the only med that stopped the progression for me. It's put me into remission quite a few times. It only becomes active again if I stop taking it. Been taking it 13 years. Only side affect is an upset stomach.

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hi kp, please do your research on Methotrexate when i bought the book on scleroderma it talked about it, and its very very toxic i no a lot of meds we take for sd are not good for us but for what i can remember that drug is very dangerous i always ask my doctor what are the side effects and wat harm do they do to our organs and then i do extra research.... i wrote my self a note NOT to take that specific drug...stacy ur very blessed that it worked for u but all meds do not work the same on every one..please kp do ur research on ur meds and ask ur doc..thanks and God bless

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Hi KP,

I thought I'd let you know that my son is 11 years old, and has been taking methotrexate for 7 months now. He's on 12.5 mg/week, orally. He takes it well without side effects. He takes folic acid also (any many other meds.) He was diagnosed with systemic scleroderma and was going downhill extremely quickly. It appears that his disease progression has stopped. Several symptoms are reversing. However, we still have a long way to go.

In addition, I have two adult friends who take methotrexate for their RA -- one at a higher dose than my son, one lower. Both tolerate the medicine well, experience no side effects, and both feel it helps them tremendously. These two friends really helped me get over the nervousness of giving my son this medication. I'm glad listened to them, and to my son's rheumatologist.

If you'd like further details, just let me know!

Melissa

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I have been on it for two months now at 15mg dose with folic acid...no side affects at all. I am starting notice improvements with my joints and inflammation level. I and my rheumatologist are hoping it will help my labs return to a more normal range.

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I took it for probably 5 years or so starting at age 10 and I didn't have any side effects from it, progression stoped eventually and some reversed. Skin never loosened but daily joint pain went away. I still take various things for the acid reflux Nexium, Prevacid etc depending on insurance or severity.

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I started methotrexate; got a shot yesterday and I am deathly ill today, I got all the bad side effects and they are horrible I will never take anymore of this drug thats just for me

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I started taking Methotrexate June 2009 (3 pills/week) they kept increasing the dose to 25mg (Nov.09) Saw MD last week skin score is down 28 to 22
But that was a good day. Other than being naueated a few times
and heartburn I have had no effects. I also take folic acid and that is what makes me nauseated if I take on an empty stomach
He did lab work, and said if my stomach was absorbing the methotrexate ok then I'd stay on the pills, but if not He switch me to injection

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My sister has had diffuse scleroderma since '94, she was prescribed methotrexate after several years of non-treatment do to the fact she kinda had given up and had trouble swallowing pills. After a ruptured diverticulitis that made enter the hospital again, we found a wonderful RA Dr. and he started her on different meds (methotrexate) was one of them. Unfortunately, this medication didn't work for her, her disease has affected all her internal organs and the Dr. was not hopeful she would even make it. But, despite the odds and 9 years she is still here.
I am here to spread the word of (Tracleer), she started this medication after the methotrexate and some other meds were not helping. She has had a lot of trouble with sores on her knuckles and celluitis. But, the Dr. put her on Tracleer which is used primarily used for pulmonary hypertension, but has been found to increase circulation in scleroderma pts. and in turn helps with less ulcers and she even had some reversal of skin pitting in her legs. I can't even believe the changes we saw in her and her Dr. said he had newly diagnosis 2 pts. with diffuse and 1 pt. in denial not taking tx and the other was and totally relieved her symptoms. (These 2 ladies were newly diagnosed and didn't have the severe symptoms of alot of advanced pts.) So, this is why I want to spread the word about this drug, so hopefully it can help people of all stages of this horrible disease.

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I recently had my dosage upped again from 15mg to 30mg. I guess my labs wernt changing fast enough to satisfy my rheumy. I am watching and waiting to see how it helps me. So far my joints are doing much better. I am hoping it will help with the skin rashes and skin ulcers and my UV sensitivity

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Sorry to say, the Methotrexate did not help me at all. My scleroderma got worse and worse, very rapidly. However, for those for whom it is working, great!

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I've taken methotrexate with folic acid for 10-15 years with little or no bad effects. I take them for RA along with Remicade infusions and I'm doing well. In the years before that, my SD was a bigger problem, and what helped was d-penacillamine. My skin softened back up and the fibrosis in my lungs got better. At least I feel it was the d-pen...who really knows since everyone tolerates meds differently?

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I took it for 3 years at a dose of 7.5 mg.It did not help and cause near fatal liver failure.I had monthly liver enzyme tests but it did not show a problem.

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Hi!

My 7 year old son hs localized scleroderma on his scalp and has been taking a very low dose of methotreaxte for 3 months. We give him a weekly subcutaneous injection, and he takes a folic acid pill daily, to offset any potential side effects. He has not had any side effects, and I can't tell you how relieved and grateful we are!

Granted, he is on a very low dose, but nevertheless, all my worrying about taking this medicine and all of my research points to--try it--see if you can tolerate it--and then if you can--give it a chance to work-- The shot is supposed to lessen side effects (versus the pill) and we give it to him at night after dinner on a full stomach. Plus, he goes to bed shortly after the shot--just another trick--if you take methotrexate.

Philsmom was helpful, because as a mother she has hands on experience, plus I had a friend who had to take very, very high doses and she did not have any side effects. Another friend's uncle takes it for psoriasis and he tolerates it very well.

Make sure you are with a top rheumatologist who specializes in scleroderma. They will understand the dosing of methotrexate, as they deal with it everyday!

Hang in there!
LaurenAnne

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