Posted 17 December 2010 - 06:31 AM
I do not test positive for antibodies, but I had a thymoma removed several years ago, and according to the American Cancer Society - Scleroderma is an associated autoimmune condition. All my immune levels are below average.
I have been on methotrexate for 3 months now with minimal results. My doctor and I agree it is difficult to tell if slow improvement can be credited to the drug.
I am so discouraged since I have had a new lesions start up while on the medication.
Has anyone had results from methotrexate they can credit to the drug?
Posted 17 December 2010 - 10:17 AM
Welcome to the Sclero Forums. I'm sorry to hear of the health issues you describe. Methotrexate is the next medication that I will be on when the Plaquenil isn't quite cutting it. All in truth, the doctors already want me on it, but I tend to go the natural direction, and so I'm holding off for now. With that said I've heard some great things about Methotrexate and it's results. I'm giving you a link that might shred some light for you, but I'm sure others that are actually on the drug will chime in soon.
Posted 17 December 2010 - 10:32 AM
Welcome to the forum! Although I am on methotrexate I can't really say whether it is making a difference or not. That said I keep taking it because it could be working.
Take care and keep posting.
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 17 December 2010 - 10:57 AM
Welcome to the Forums. I'm sorry you are having difficulty in getting a diagnosis and effective treatment. That's got to be terribly frustrating and knowing that it's a common situation in autoimmune diseases isn't much of a comfort, I'm sure.
Methotrexate is an immune system suppressant, that is, it suppresses/lowers your body's response to what it believes is an outside attack. You mention your immune levels are all below average - is that since starting methotrexate? If not, I'd wonder why your doctor would want to further suppress them. Anyhow, methotrexate is a mainstream treatment for scleroderma and there have been extensive trials with it. From a completely non-medical viewpoint, I would say there has been 'sufficient' evidence of effectiveness in 'enough' patients for it to still be widely used. Of course, the catch is always that each patient is unique as is the course of their illness and response to any particular treatment. The other thing to consider is that every medication has its own length of time to kick in, as it were, and it may take several months to really feel any improvement.
I hope you get some definite (positive!) results with the treatment soon. Please let us know how you are getting on.
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network
Posted 17 December 2010 - 11:17 AM
I did inform my doctor of my thymoma and low immune levels, and the scleroderma connection. All in all, we decided I needed relief soon, and I was started on Methotrexate. I had heard of someone through a friend that that was the silver bullet for her lesions.
I will continue the therapy in hopes I just have a slow system, and the effects have just not kicked in completely. I will keep you posted on the possible effectiveness of methotrexate.
Again, thank you so very much for your warm words of encouragement.
Posted 17 December 2010 - 07:33 PM
A warm welcome to these friendly and informative forums!
I'm so sorry to hear that you've been having very unpleasant lesions and are feeling a little discouraged. I'm afraid I can't advise you about Methotrexate as I've never taken it; I'm on another immune suppressant. I do agree that different people react in different ways to different drugs so it might just need a little while for you to feel the effects of it.
We do have a list of experts that specialise in Scleroderma HERE should you want to consult another physician. Scleroderma is such a complex disease that although you've got a good physician treating you it may perhaps be worth consulting another specialist if you're not having any improvement.
Do please post again and let us know how you're getting on with your treatment.
ISN Assistant Webmaster
SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)