14 replies to this topic

[michele chere]

Hi Everyone! I saw my rheumatologist yesterday. After examining me he said the scleroderma is definetly getting worse and is referring me to Duke University. He said if I can't get into Duke he wants me to start on Methotrexate. I know many of you have taken Methotrexate and I would like to hear how you responded to it and what side effects you had.I'm hoping I will be accepted at Duke, but if not I would like to know what I'm getting into with the Methotrexate. Thanks for your input.
Sending Happy Thoughts to all!
Michele Chere

[Purr]

Hi Michelle,

I've been on methotrexate for about 9 months. I have mixed connective tissue disease (raynauds, lupus, scleroderma, and polymyositis). I started out taking 4 pills once a week. Every 2 months the doctor increased it by 2 pills. In February she started me on a 1cc injection once a week. The injections are subcutaneous (pinch some fatty tissue and stick the needle in). Alot easier than I expected. Anyway, since I've been on the methotrexate my skin has softened a lot compared to what it was. My muscles are much stronger. In the beginning I could hardly lift a med size dish soap detergent bottle or get out of a chair without some kind of help. Now I can actually rearrange 'some' furniture, reach up to the 2nd shelf in my cabinets, and not worry about falling on my face when I bend down. It's amazing the things we don't appreciate until we can't do them anymore.
I could tell a difference after about 1 month on methotrexate. The really big difference came when I started giving myself injections. Side affects I had were minimal, a headache with very mild nausea that went away quickly and after a while stopped completely, and some acid reflux problems that stopped after a while, especially when I started the injections.

Keep in mind that medications affect everyone differently.

Take care,
Christy

[Lucy]

Hi Michelle,
I tried to go on Methotraxate twice - the first time was for 3 months and I experienced extreme fatigue and a general feeling of not being well for 3 days after taking it. My physician stopped it because she feels the drugs value is still questionable and I was not seeing any results. I asked 6 months later to try again since my SD was still so aggressive. We did try again, but I ended up in the same situatiion and we discontinued. That was my experience.

[smac0719]

I have been taking Methotrexate since 1/07. I have not experienced any side affects that I can pinpoint. I started off taking 10mg, then 12.5mg, then 15 and just last week it was increased to 20mg. I used to have a lot of pain in my arms from the sclero. The pain went away almost immediately. One of my coworkers was taking it for RA (I think) and she suffered some hair loss. She also wasn't able to function on it (felt very lethargic) so she stopped taking it. I don't know anyone else who has had that problem. Best wishes!

[michele chere]

Christy, Thanks for the feedback. I'm glad your side effects were minimal. It sounds like you are having really good results, too. Your input has eased my mind about starting the Methotrexate. I am very sensitive to many medications, so I'm always hesitant to start something new. Thanks again!
Sending happy thoughts!
Michele Chere

[KELLYB.]

Hey Michele -

I've been on Methotrexate twice, both times with great results. I rarely have the sick feeling some people complain of, but I do make sure to eat plenty when I take it. It's helped a great deal with the stiffness & pain. It was a lifesaver for me. Medications obviously effect people differently though, so if you do try it, I hope it works well for you.

Good luck & take care,

Kelly

[Shelli]

Hi Michele

I've been on methotrexate for about 4 months. I've noticed that my aggressiveness of the disease has halted. I haven't seen any progression since about after a month of taking it. I do get sick to my stomach though. It helps when I don't take all the pills at the same time. I haven't noticed being more tired than normal. Oh, and I don't seem to be as stiff. I hope that my skin will soften. Having tight skin is so annoying.

My doctor also told me not to drink alcohol when taking this medicine, but I can't find anything that validates that. Has anyone else heard of this??

[janey]

Michelle,
I was on Methotrexate for 3 years. 2.5 of those years were once a week 25 mg injections. I suffered no side effects that I was aware of and I tolerated it quite well. It was the first medication I was put on and did a great job in slowly the progression of the disease. Good things happened a lot faster than I had anticipated. I was taken off MTX after I developed a mild pulmonary fibrosis. There is a possibly (but no way to prove it) that the MTX may have attributed in part to the fibrosis. The fibrosis did not get worse after coming off the MTX. In fact, it actually has improved. My pulmonologist can no longer hear crackles in my lungs.

Best wishes to getting into Duke for evaluation. Let us know what happens.

Big Hugs,

[RememberingToSmile]

It always amazes me how everyone responds differently to the medications....

In 2006, I started with Imuran (Azathioprine) which helped with myositis symptoms, but not the scleroderma. When I saw the specialist, he switched me to Cellcept and the horrible skin symptoms of my diffuse scleroderma responded quickly and wonderfully.

Last year my Dr. added Methotrexate (MTX) and more recently IVIG to help with the inflammatory myositis. We tried to drop the Cellcept, but it was too early. My skin symptoms flared again, but are now under control after adding the Cellcept back. At one time I recall the Dr. saying they see my response to Cellcept in roughly 50% of their patients.

My joints love the MTX (!) and I've met others with Rheumatoid arthritis and lupus who have been on MTX for many years without problems. We've discussed the Gleevec trial as another option in my care, but ruled it out as long as I am responding to the other meds.

I usually restrict my activities the day and day after I take the MTX pills, otherwise no real side-effects for me. I take the pills every Friday with my breakfast (oatmeal, fruit, coffee, and lots of water through the day).

Good luck getting in to see the specialist. Scleroderma is so different in each person. I am more confident/comforted seeing someone who as been dealing specifically with the sclero population.


-RTS

[michele chere]

I want to thank all of you for your responses. I've come to the conclusion that while everyone responds differently to medications, most of you have had positive results, with a few side effects. That is encouraging to me. I still haven't heard back from my doctor about Duke. I guess I will call Monday to see what's up. I called my gastroenterology for a prescription for the GI cocktail. The nurse told me that they do not prescribe the GI cocktail, it's only administered at the hospital. I am soooooo disappointed! I sure could've used it 2 nights ago when I thought my throat was going to melt from the burning acid from the reflux! Oh well...on to the next step! Thanks again...you all have helped me tremendously!

Happy Thoughts!

Michele Chere

[n88740]

What doctor do you see in Jacksonville? My cousin lives in Jacksonville and has scleroderma and needs a good doctor who knows something about scleroderma. Please PM me with the information.

Thank you.

[amberjolie]

Hello!

I've been on 20 mg per week of methorexate for about 8 months now. No ill side effects, other than particular joint stiffness the following morning after I take the pills. I think it's helped taken the edge of the joint pain, but they're still very stiff, and I still get some pain from time to time, and I also have some form of myositis that it isn't helping for at all. So my muscles are getting weaker all the time.

I'm trying Remicade right now, too (just started), but I don't think it's doing too much. Because I don't get any drastic changes, it's hard to tell sometimes if there really is a change or not.

[miocean]

Dear n88740,

I am sorry to hear about your cousin having scleroderma. It is so good of you to try and help her find a center.

The scleroderma centers are listed here but none are listed in FL. I lived in Jacksonville years ago and about 5 years ago went through testing for a kidney transplant at the major medical center there. Of the three centers I listed at they were the most thorough. Although they do not have a scleroderma department, they do have rheumatologists specializing in connective tissue disease.

A friend of mine was just diagnosed with a very rare brain disorder there. Since it is so rare and the major medical center wasn't quite sure of the diagnosis his labs were sent to another highly respected clinic in the North. Unfortunately, the diagnosis was confirmed but it is shows that if the doctors there are unsure of something or have questions they have the means to seek confirmations from other sources.

This is a wonderful forum and the Medical Pages have a wealth of information. Perhaps you can encourage your cousin to ask questions here. I would have been lost without the support and guidance of all the volunteers and members who help make this all possible.

I will also PM you to make sure you get this information.

miocean

[Joelf]

Hi N88740,

Welcome to these forums!

I'm sorry to hear that your cousin is suffering with Scleroderma and I hope that you will be able to contact a Scleroderma specialist using Miocean's information.

Kind regards,

[Shelley Ensz]

Hi N88740,

Welcome to Sclero Forums! I'm sorry your cousin has scleroderma, but I am very glad that you are pitching in to try to help. I hope you found Miocean's information helpful and that your cousin gets the necessary care. Please let us know if there is anything more we can do to help.