Methotrexate to induce remission

[Chris G]

Briefly......I have "head & neck" or "limited" WG (for lack of a better term). I've been on mtx and pred for 17 weeks. Increased mtx to 30mg oral last week, which made me feel like I'd taken a handful of vicodin, and yet also extremely agitated. Changing to injectible this week - hoping for fewer side effects. I do understand that it takes longer to quiet the disease with mtx VS. ctx & rtx, but for me, the mtx seems not to be working. Or perhaps it hasn't been long enough.

So, my question(s) for those of you who've used mtx to induce remission: were you able to achieve remission with mtx? At what dose, and method - oral/inj? If so, HOW LONG did it take? and were you able to get completely off pred?

If mtx did NOT work, which drugs did they add, or change you to? Did you achieve remission with those drugs?

I was so relieved when I was finally diagnosed, thinking........finally I'm going to be treated, and I'll be well again. I was naive. The reality of this disease is sinking in. I'm becoming very frustrated & discouraged.

[NicShaf]

Chris G,
Were you recently diagnosed and they are treating you with mtx first? I'm new to this myself, but my Rheumy told me a maintenance drug like mtx would come after a main immunosuppressant such as ctx or rtx. I have sinus and lung involvement, also considered "limited WG".
I haven't take mtx yet, so I'm sorry, I can't give you any insight as to how long it takes to work.
Nicole

[Chris G]

Yes, just diagnosed in November, and treatment from the start, has been mtx. I don't have lung or kidney involvement, which is why they start with mtx. Your lung involvement trumps my diagnosis - that's why your rheumy would start you on something stronger.

[vdub]

I was diagnosed 11 months ago. I was put on mtx almost immediately. At first it was 15mg every week, but once I saw the rhemy 2 months ago at the U of U Vasc Center in Salt Lake City, they up'ed me to 25mg each week. I haven't felt any ill side affects that I know of, however, I'm pan hypo pit, so I am on so many drugs it is difficult to seperate out what side effects are caused by which drugs. I'm hoping to start tapering off the mtx in June.

On edit.... Sorry, I didn't answer your question. 25mg is oral and I don't think I'm in remission yet....

[Sangye]

ChrisG, please don't feel discouraged! I understand your frustration. When I was dx'ed I was told that I'd have to be on ctx and pred for a year but then I'd most likely be fine and done with meds. That was nearly 5 years ago and I've never been off meds or gotten much of my function back. I was also very naive--misinformed, actually--and it saddens me to think how many times my hopes have been dashed. However, that is not the case for everyone. As one of my doctors told me on a very dark day, "You must never allow yourself to lose hope." I'm a natural optimist but that has been challenged at times.

Mtx is not strong enough to induce remission of highly active and more severe disease, but it is strong enough to control milder disease and is often used as a first drug in those cases. It may be that you just need a higher dose, or maybe a different drug.

[Psyborg]

Yes, just diagnosed in November, and treatment from the start, has been mtx. I don't have lung or kidney involvement, which is why they start with mtx. Your lung involvement trumps my diagnosis - that's why your rheumy would start you on something stronger.

I also have no lung or kidney involvement, but I started on CTX first for a few months to get things kick started. Not to second guess or anything, but depending on how your body reacts they may want to start stronger to get things rolling the right way so to speak.

[JanW]

I started on mtx, no prednisone, to induce remission a year ago this week. I was dx in January, started on a test dose of mtx which shot up my liver enzymes (in retrospect because my version of having an occasional drink and my rheumy's version are different), was immediately pulled off mtx because I was having stenosis surgery in March (so between dx and March, no drug therapy) and restarted two weeks after my surgery in early March. It induced a complete remission in probably about three to four months, but during that time I was consistently feeling better (joint pain disappeared, nasal crusting disappeared). I started at 15 mg and remained there for some time but was still experiencing a great deal of joint pain in my ankle that my rheumy didn't think was connected (also seeing a podiatrist and PT at this time). Rheumy gave me a 5-day course of pred to see if that would have any impact and low and behold it worked like a charm. So I finished that pack and then immediately upped my dose of mtx to 17.5 (one more tablet). I just today took 15 mg as we are attempted to get me into a med free remission -- let's see if it works.

For the record, I have moderate WG, no kidney involvement, small lung nodule (since gone), saddle nose, serious subglottic stenosis (repaired), joint pain no kidney involvement.

I have had no side effects from mtx at all.

Your dosage is the outer edge of what my doc gives to anyone including massively sick RA patients -- he has only gone as high as 32.5 mg.

[NicShaf]

Yes, just diagnosed in November, and treatment from the start, has been mtx. I don't have lung or kidney involvement, which is why they start with mtx. Your lung involvement trumps my diagnosis - that's why your rheumy would start you on something stronger.

I see. When you said "head & neck" I wasn't sure if this included your lungs or not. Now it all makes sense.

[Chris G]

I was on 20 mg mtx for about 9 weeks, then increased to 25 mg for about 8 weeks, then last week bumped up to 30 mg (which really kind of scares me!). The docs want to give it a real chance before adding a med, or changing to something else. But symptoms started returning once pred was dropped below 25 mg. I'm at 17.5 pred now, and miserable most days. They don't want the pred increased, so that, when and if the mtx really starts working, we'll know it. I personally, just feel like it's not going to work and I'm wasting my time on it. I mean, really, 17 weeks on mtx, and pred no lower than 25 mg before symptoms return? It's the pred that's doing the work.....not the mtx.

And the mtx is beginning to scare me. About 5 hours after taking 30 mg, I could barely hold my head up. The next day, I was in a complete fog for most of the day. It's not nausea that's a problem for me. So I'm worried that injectible mtx will still make it so I can't function mentally.

[vdub]

my version of having an occasional drink and my rheumy's version are different

Dang, Jan, I thought I was the only one who had a differing definition of occasional. Interesting article here...
MTX and Alcohol