Help with Methotrexate

I was diagnosed with MCTD in June. I have a positive RNP antibody and as far as I know, I am negative for all other antibodies. I basically had a year long flare. I saw a scleroderma specialist this past week who gave me a script for Methotrexate.

She was also very upset that I have been on 20mg of Prednisone for two months but I have FINALLY got this flare under control. This is the best I have felt in over a year. No sore joints. No more swollen hands, no more inflammation, ankles are not swollen, NO MORE TONGUE ULCERS. Still have some slight Gastro issues. (heard that MTX aggravates this as well)

She gave me a skin score pinch test which was very low. I think a 7 out of 51? I don't have "hard skin" anywhere except for two fingers that have fibrosis from being inflamed for so long.

Anyway, I have heard many horror stories about this drug. I will start it on Sunday afternoon to give me a day of rest. I was also given Folic Acid to take once a day.

Can anyone give me their experience with MTX? Has it been effective for MCTD/Scleroderma if you have it? Does it make you ill? Does it get better? I am so stressed over this disease, and I know many other people have it much worse considering I can still exercise, hike, etc. , but I really would like to get this under control so I can keep working for my family.

Oh yes, do you take the folic acid the SAME day as the MTX or avoid it that day and start it the day after?

Post Edited (greypilgrim256) : 10/30/2014 4:03:07 PM (GMT-6)

I've been on MTX for almost 4 years now. In the beginning I took it orally for like the first year, had a bit of tummy issues but not to badly. Then we needed to up my dosage and I finally reached an amount that the body doesn't absorb it orally well, so we switched to weekly injections.

I still would feel tired and a bit nauseated the next day but usually was good to go after the 2nd day. I take my folic daily every day no matter what. Normally the Dr prescribes it this way and I do take it on the days I give myself the shots.

I believe that it is easier on your stomach in the injection form to a certain point. Now I have LGL leukemia in addition to my lupus. MTX is also being used to keep my leukemia in check at this point. Therefore, I'm taking by far more MTX than the normal lupus or RA patient would ever take. I'm having issues with nausea, oral sores, and my tongue cracking w/bleeding. Like I said though I'm on a big dose of MTX.

When you're taking MTX you should be getting your labs checked monthly. I know my Rheumy says it's okay to wait 2 months, but my Oncologist said that's not acceptable period. He wasn't just referring to the fact I take more than I would for just my lupus. He's an Oncologist and MTX is a chemotherapy agent and they (Oncologist's) are big on lab work.

If you have problems with the MTX stick it out it can take a bit to get used to it. Unless, you're having serious side effects, let your Rheumy know what bothers you when you take it and see what they say.

Hope this helps, if you have any other ?'s that I might be able to help with let me know.

Hugs,
Barbara

PS Joy I'm sorry that you can't take the MTX orally, will you do the injections? If not what are they planning on giving to you?

I just started taking MTX for my lupus.
I take it on Sunday evenings as well and so far IV had night of vomiting/nausea and headache , the next day tired, nausea and a bad headache.
I was told to take the folic acid the day after taking the MTX so Monday morning I take mine.
I wish you luck on this crazy journey.
Gentle hugs,
Leesha