Question about Maintenance

[Middlesista]

Some react more strongly than others, and I have gotten pretty used to it and don't notice it much, often not at all, plus you can pick the day to take it so as not to interfere with your work as much. I haven't yet had what Pete experienced, starting to have worse side effects at some point, after awhile. For me, the side effects of CTX were more unpleasant, and I took it every day, but I did get pretty used to that, too. If you do have to take MTX on work days, just play it by ear, split the dose, get plenty of rest the night before, eat right, etc., and maybe it won't turn out to be so bad.

Thanks Anne - it will end up that every other week I will be taking the MTX on the day before I work since my schedule is pretty consistent unless I alter the days I take it which I am not sure is a good idea. I suppose I can check with RA about that.

[Middlesista]

One thing that will become apparent from this forum is that there are almost as many variations of treatment as there are people posting here! These differences are by the person, the country, the consultant, the nature of health care. Hence direct comparison can be difficult. However, being aware of other regimes can be useful in 'testing' your consultant to make sure he / she is aware of other regimes and not just working from one regimented book!

For me when Cyclophosphamide failed I went on RTX to control flares. Maintenance is Methotrexate with 1 5mg folic acid tablet per week, a day after MTX (definitely not on the same day!) I have been off pred for about 1 year now.

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Thanks pwc51 - how often have you had flares being on MTX for maintenance? My RA is using the MTX to try and get me off prednisone as well as a maintenance drug - at least that is what he explained to me

interesting what you write about folic acid - I have read a lot of conflicting info about this and many people take it the same day. Same with Bactrim - if u read the info it tells you about lots of issues with takng MTX with Bactrim but lots of folks seem to take them. I well understand that we are all different but I wonder why take the chance that nothing bad will happen

[renidrag]

As another different view,I stopped all WG meds June 30, 2010 and have not been back, other than a two week stint
of prednisone in 2014. We are now watching SED rate, CRP andPR3 ever so slowly rising. Perhaps I too will be on maintenance soon. Definitely not experienceing a flare.

[Middlesista]

As another different view,I stopped all WG meds June 30, 2010 and have not been back, other than a two week stint
of prednisone in 2014. We are now watching SED rate, CRP andPR3 ever so slowly rising. Perhaps I too will be on maintenance soon. Definitely not experienceing a flare.

i was so hoping that I could get away with taking nothing but the Bactrim and titrate slow off prednisone. I think the meds are so difficult for our poor bodies to deal with. I am looking forward to getting into MGH to see what the doc there seem to think I know we are all different and my RA who has done well for me feels it is important for me to be on maintenance meds - so I will follow his advice

Was your ANCA, Pr3 and inflammatory markers positive/high initially and then went to negative/low? I hope you can stay status quo with no meds and your numbers stay negative.

[Girly3800]

My husband takes MTX as maintenance and 2 mg of Folic acid a day. The MTX fatigues him for 3 days after taking it. Splitting the dose doesn't help much at this point, although at one point when on a higher dose he split it. He does not take Bactrim. While he was on Cytoxan he did but it was stopped when he became somewhat stable and switched to MTX. The rheumatologist told us that the Bactrim causes the MTX to remain longer in his system which could ultimately affect his kidneys. At the moment his steroids are at 8 1/2 mg a day. He stopped Prilosec just a couple of months ago. We'll see tomorrow with the rheumatologist tomorrow whether that is a good idea - the Prilosec theoretically stops some of the stomach damage caused by the steroids.

Last year he stopped the MTX because he was stable and had had good blood work for awhile. Didn't take even two months before he was in a raging flare. We (he) have decided that fatigue is far better than a flare and he will continue on MTX until it no longer works for him. The flare was the likely culprit for the mononeuropathy of his right elbow which has resulted in wasting muscles and two surgeries. The fatigue has been getting slightly worse every week though.

[Middlesista]

RA said to continue Prilosec but to stop Bactrim DS. We shall see.

[vdub]

While I was on mtx, I took 1 mg/day of folic acid with no difficulty. I even took it on the day I took my mtx. My doctor never said no to do so.

I don't think it is so much a matter of you can't take folic on mtx days, but, rather, that it is a waste, because the folic is flushed by the mtx. I'm on 20mg mtx for maintenance and 2mg/day of folic on none mtx days.

[Alias]

Sounds like you are doing really well for being so recently diagnosed!

Remission does not necessarily mean you don't need meds, and I think many on this forum are in drug maintained remission. The MTX is commonly used as a maintenance medication. I have been on it for two years. Starting to dial back the prednisone probably indicates that your doctor thinks the inflammation is mostly under control, so that's great, right? My doc took me off of Bactrim after about a year. As someone else mentioned, there are so many combinations of meds and dosages, depending on what your doc thinks and what particular features of WG you have. I was never given any warnings or instructions about holding back on the folic acid on MTX days.

Regarding MTX, I was told I should take it for as long as I can safely tolerate it. In a post a few weeks back I attached a pdf of a recent study from some docs at Cleveland Clinic. This was a retrospective study of WG patients and what happened to them when they went off maintenance meds. You can probably find it by looking at my previous posts, or if you can't and you want to read it let me know and I'll direct you to it. What I took away from this study (and what my doc says) is that the relapse rate for this strange disease is quite high, and the benefits of staying on maintenance meds outweigh the risks.

Again, every case is different. No doubt the fact that you have had RTX factors into what your doc recommends for the future. Sounds like you are definitely on a good track though!

[vdub]

I've been on mtx for 6 years now. I started at 30mg and then went down to 25 and now 20. I've been on 20mg for the past 5 years. I have been on pred on and off, but mostly on. I was at 8mg most of last summer and I'm currently at 6mg with a 1mg/month taper.

Surgeries keep getting in the way of having a nice pred taper. Whenever I go in for a surgery (next one will be June/July time frame), I have to be put on large doses of hydrocortisone in order to prevent an adrenal crisis. That kind of messes up my taper and probably doesn't help my remission. Actually, I'm not certain I've ever been in remission, at least not for the psoriatic arthritis.

[Middlesista]

My husband takes MTX as maintenance and 2 mg of Folic acid a day. The MTX fatigues him for 3 days after taking it. Splitting the dose doesn't help much at this point, although at one point when on a higher dose he split it. He does not take Bactrim. While he was on Cytoxan he did but it was stopped when he became somewhat stable and switched to MTX. The rheumatologist told us that the Bactrim causes the MTX to remain longer in his system which could ultimately affect his kidneys. At the moment his steroids are at 8 1/2 mg a day. He stopped Prilosec just a couple of months ago. We'll see tomorrow with the rheumatologist tomorrow whether that is a good idea - the Prilosec theoretically stops some of the stomach damage caused by the steroids.

Last year he stopped the MTX because he was stable and had had good blood work for awhile. Didn't take even two months before he was in a raging flare. We (he) have decided that fatigue is far better than a flare and he will continue on MTX until it no longer works for him. The flare was the likely culprit for the mononeuropathy of his right elbow which has resulted in wasting muscles and two surgeries. The fatigue has been getting slightly worse every week though.

Thanks Girly - my RA also told me to stop Bactrim for reasons you wrote but to continue with the Prilosec. I am still on Prednisone and so want to get off it.

My my best to your husband s d hope the fatigue lessens.