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 (http://rawarrior.com/methotrexate-and-rheumatoid-arthritis-is-alcohol-consumption-safe/)

[Chris G]

My rheumy told me I should not drink at all, except for special occasions. (That sounded a little harsh).

She did not define "special occaision". Some might consider a Saturday to be a special occasion, right? Thanks for the article vdub. I'm not a heavy drinker, but I do enjoy my margaritas. I figure a couple a week won't do any harm (no, not every week). And I make sure to time my bloodwork, so my liver enzymes don't give me away.

But lately, I've felt to crappy to drink, so I guess my liver has nothing to worry about.

[JanW]

They went over this some at the Symposium, where the docs said that it is very typical for American docs to tell their patients that absolutely no alcohol is safe while on mtx, while European docs typically issue no such warning ever. My doc said something along the lines of "I don't tell my patients not to drink on it, but space your drinks away from your dose day, and only drink moderately" which to him probably meant a drink a week and to me meant more like five (prior to dx I was a daily wine drinker). I am probably right around the five units they've suggested that European docs advise in that article.

That is in fact the biggest complaint/side effect among mtx patients the docs at the Symposium said -- the feeling that you shouldn't consume any alcohol. That's hard for some people to do as a lifelong thing, and certainly some RA patients are on it their entire lives.

[Chris G]

Thanks for all of the good info guys. As I sit here with the pressure and sinus headache increasing by the hour (even after taking motrin), I become even more convinced that mtx is not the answer for me. I'm tired of feeling crappy and wasting time with mtx. Time to make a change! I have places to go & things to do!! Ha. That's a little optimistic of me eh?

[JanW]

Not optimistic at all! You deserve to feel better than you do now. What do you lab results say? Do they show any improvement (another way to know if meds are having any effect).

[freakyschizogirl]

To be honest i think i drink alcohol more regularly now than i did before i started on the mtx!! It wasnt a conscious decision, it just happened to be at the same time as i started my new job when i got diagnosed and then coincidentally my friend had the same day off as me so we have a few drinks, we like them cocktails!! I never drink on the day i take my mtx cos i take it on a monday...who drinks on a monday? lol! But yes compared to last year i do drink more regularly than i used too.

[Chris G]

My last labs were January 18. Still P-ANCA positive. Not much change from the previous labs except that my white blood count had dropped to 10,000 (a big improvement from 26,000 - I'd had a bad ear infection in November/December). I guess I don't know what other things to look for that would indicate an improvement. What should I look for? I see the docs next week, and they'll be doing the usual labs then. So I may have more to report next week. But based on the way I feel......I don't expect the labs to show much improvement. Did I mention the mtx is not working!!?? :mad1: LOL

[Chris G]

To be honest i think i drink alcohol more regularly now than i did before i started on the mtx!! It wasnt a conscious decision, it just happened to be at the same time as i started my new job when i got diagnosed and then coincidentally my friend had the same day off as me so we have a few drinks, we like them cocktails!! I never drink on the day i take my mtx cos i take it on a monday...who drinks on a monday? lol! But yes compared to last year i do drink more regularly than i used too.

And no adverse liver affects I assume. These US docs sure seem to be more strick than UK docs!

[Hammy8241]

And no adverse liver affects I assume. These US docs sure seem to be more strick than UK docs!

Hard this. On one hand, Liver failure is not to be recommended but in this day and age of total risk management, just breathing comes with a hazard warning!

Don't think there is any difference between the Drs guidance , but more likely there is a difference in what the patient 'WANTS' to hear. Our interpretation of their advice depends on how it fits in with our lifestyles.

Moderation is key IMO and I'll drink to that:wink1:

[JanW]

just as the basics, the docs should be charting the progression of your ESR (sed rate), CrP (c-reactive protein), creatinine (even with no kidney involvement you need to make sure it stays that way), PR3 and ANCAs. My doc says that the most sensitive to positive changes in WG is ESR, although c-reactive protein is the most sensitive to change positive or negative (ESR takes longer to go up or down, more subject to handling error because of the nature of test).

[vdub]

I didn't know what the C-reactive was all about. I'm having blood tests every 2 weeks now and the last one (5 days ago) had C-reactive out of range and listed as "very high". I guess they'll tell me if there is an issue.

[JanW]

Very high is a sign of inflammation, vdub. Along with ESR and RA factor it's a pretty common inflammatory panel that docs run when they are first trying to assess what's going on with you. That C-reactive number should respond to treatment pretty quickly.

[Tim Roberts]

Chris: I thought that i would respond to your initial questions and concerns about methotrexate as I have been taking it for about the last 18 months after my diagnosis with wegener's in August of 2009. At that time, I was put on 60 mg of prednisone and 20 mg of oral methotrexate every week. I was fortunate to be diagnosed very early with only some lung and upper respiratory involvement.

It took me about 8 months to fully wean off of prednisone so I have been completed with that for about a year now. The oral methotrexate made me feel crappy the day i took it and even into the following day. My rheumatologist switched me to injectable methotrexate about 5 months ago and it has made all the difference. She explained to me that although the weekly shot is less than pleasant (actually it is not difficult at all) the benefits are great. Not only do you not experience near the side effects but the injectable is better absorbed by your body and more easily tolerated. It has worked much better for me so I am hoping the change to the injectable helps you as well.

As far as achieving remission, for me that is a difficult question. Prior to my diagnosis, I felt horrible for about three months with a terrible cough and about a 20 lbs weight loss as I had no appetite whatsoever. Those symptoms disappeared shortly after being on prednisone and have continued to stay away after completing my prednisone regime so I suppose you could assume I am in a drug induced remission because I still take the weekly methotrexate. My rheumatolgist indicated in the beginning that I will probably remain on methotrexate for a year so if I achieve remission and then I will have to make the decision to either stay on the drug or go off. It would be wonderful to achieve a drug free remission but also somewhat scary to think that it might come back again. I'll have to give that some thought but I am kind of a risk taker so given the choice, I will probably opt for going off the drug just to see. Time will tell I guess.

My advice is to not give up hope as yes, this can be a terrible disease but it can be manageable. I think that every person on this site will indicate that their diagnosis with wegener's has changed them and given them a different perspective on what is important and what is not important in life. Focus on the things you can change, keep the faith, ask lots of questions of the experts on this site and question your doctor if need be. We are always here to help you through this as you are not alone. Best of health to you.

[Chris G]

just as the basics, the docs should be charting the progression of your ESR (sed rate), CrP (c-reactive protein), creatinine (even with no kidney involvement you need to make sure it stays that way), PR3 and ANCAs. My doc says that the most sensitive to positive changes in WG is ESR, although c-reactive protein is the most sensitive to change positive or negative (ESR takes longer to go up or down, more subject to handling error because of the nature of test).


Ah yes, I forget about ESR and CRP, because my ESR has always been NORMAL, and CRP only slightly elevated. And actually I'm P-ANCA positive (MPO, not PR3). My WG doesn't seem to want to follow any of the rules! UGH! :angry:

Maybe I can get some sort of info from the CRP & ANCA this time. Fingers crossed.

[pberggren1]

How much pred are you on Chris?

[Chris G]

It took me about 8 months to fully wean off of prednisone so I have been completed with that for about a year now. The oral methotrexate made me feel crappy the day i took it and even into the following day. My rheumatologist switched me to injectable methotrexate about 5 months ago and it has made all the difference. She explained to me that although the weekly shot is less than pleasant (actually it is not difficult at all) the benefits are great. Not only do you not experience near the side effects but the injectable is better absorbed by your body and more easily tolerated. It has worked much better for me so I am hoping the change to the injectable helps you as well.


Lots of good info here Tim. Thanks. I'm not at all afraid of shots.......so I'm happy to change to injectible if it will help. But, I'm still wondering about the side effects of oral vs. injectible. With oral mtx, I've never had any stomach upset. My main complaint about it is that it literally makes me feel "drugged", like I've taken 2 or 3 vicodin (I can't function mentally), and I also feel very agitated. So, when I change to injectible (tonight will be my first dose), will those "mental" side effects remain? Or will they also be alleviated? I'm very nervous about this first dose - I'm afraid I'm going to be laid out in a coma all day tomorrow.

[Chris G]

Phil - My pred is at 17.5mg, and holding - until we get the darn mtx to work! If not, I guess it'll be back to the drawing board.

[pberggren1]

Chris G, you might need a higher dose of pred for a bit like up to 40 or 50.

[Chris G]

They want me to hang in where I am with the pred, while we boost the mtx. That way we can tell when that it's the mtx that's working, rather than pred. I'm still skeptical, but will give it a try.

[JanW]

How did it go with the injection, Chris?

Your doc's reasoning is sound -- they've got to find the immunosuppressant that works for you. Raising the pred isn't the answer, and if you are getting worse, the mtx may not be functioning well for you (or you could be at the wrong dosage, but you're at a fairly high one already).

[Chris G]

Hey! I'm vertical and feeling ok! The injection scared me - not the needle itself (that was a piece of cake)......I was afraid the drug would make me loopy & I'd be drooling all day today.

So I guess for now, I continue with my pred at 17.5, and hope to see some improvement from the mtx in the next couple of weeks. This is only my 2nd week at 30mg mtx - last week it was orally, this week injectible. The input I've received from others here, tells me that the injectible, not only has fewer side effects, but is better absorbed by the body. So, hopefully, this will be the answer. I'm still a little skeptical, but I'm trying to remain hopeful, or I'll go nuts.

Thanks for all of the input and encouragement! :thumbup:

[Sangye]

I hope you do well on it, Chris. :smile1: