Question about Maintenance

[Middlesista]

GPA Nov 2015: After 4 doses of Rituxin, prednisone (now at 15mg) and Bactrim my labs have improved to a CRP of 1.6 and my recent ANCA and PR3 are now negative. Still have small amt protein in urine but have had this before dx, last CT scan showed resolution of lung lesions. RA is using the R word (remission) but if that is the case why the Methotrexate - he does want to wean the prednisone off but not quite yet and he mentioned having to be on methotrexate for 2 years !!!

So the methotrexate would be a maintenance med and I have been reading about this drug and am curious what other folks have experienced. I have read that should not take Bactrim when on this or Prilosec. Have read that you should not take folic acid the day you take the methotrexate and have also read that it is helpful to split the dose half in am and half in pm. Read about potential side effects and not looking forward to taking the drug

Have also read that some people that had Rituxn did not take maintanance other than additional doses of Rituxin


Would appreciate any feedback folks can offer

[annekat]

I do take Bactrim along with MTX, and I think a lot of people do. There is a warning about it possibly increasing the side effects, so when first filling the prescription for both, the insurance that covers your drugs may require a pre-authorization from your doc. If your doc says it's OK, it should be OK, and if you are getting regular blood work, any problems would show up. I can't remember the exact issue, but I've never had any problems in 5 years. One insurance I had was pretty difficult about it but finally said yes, the second insurance never even asked for a pre-auth, but something came up in the system each time which the pharmacist could over-ride, and my current insurance asked for the pre-auth, but all they wanted to know was if I was being treated for cancer, and when told no, they approved it. Maybe someone can explain the ins and outs of this issue, as if I've heard an explanation, I've forgotten it.

As for taking folic acid the same day as MTX, my doc never told me that, and I don't know the reason for it, but a forum member whom I respect said her doc told her not to, so I keep that in mind and try not to. I can always make up for it another day if I wish, as it has been established on here, I think, that folic acid is just peed out and there is no harm in taking greater amounts of it than you might have originally. And it can indeed be helpful to split the dose of MTX to avoid any nausea or general yuckiness you may feel. I do 4 pills at night before bed and 2 the next morning, but you can split it up however you want.

A lot of people are said to be in medicated remission even though they are still taking maintenance meds. There is no apparent disease activity, but the meds are being used to make sure it stays that way. That's probably what your RA meant when she used the R word. After 5 years, I haven't heard the R word, even though at times I've felt good enough for it to possibly apply; I think my doc is just not one to throw that word around. So it can be subjective.

And yes, there are people who just take RTX for maintenance, along with prednisone, probably, but without any additional maintenance immunosuppressant. Every case is a little different and each doc may handle things a little differently. I hope this all helps some.

[Pete]

I'll echo much about what Anne has said. I was on mtx from July 2012 - August 2015. At first, I didn't have too much problem with it - at least nothing that altered my lifestyle (any more than wegs had already done). After about a year on mtx, my doc at Cleveland Clinic said I was in a medication induced remission. As time progressed, I noticed a bit of fatigue the day after I took my weekly dose (varied between 15 and 20 mg weekly). I started splitting my dose taking half in the morning and half in the evening. That eased the fatigue for awhile, but last spring, I was feeling a bit wiped out for a couple of days after my dose. I should note that the fatigue was merely annoying, and not debilitating. I just had to work harder to get through the days after my mtx dose.

I spoke with my doc about this, and she decided to discontinue mtx and give me rtx as a maintenance therapy. In August 2015, I took 4 x 750 mg doses of rtx. That ended the fatigue. My monthly labs have remained stable. I feel good and am able to do everything I want to do (I'm 69 going on 54). I take bacrtrim 3 x weekly. I take 5 mg prednisone daily.

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 also took rtx while continuing mtx. I had two 1,000 mg doses in October 2013 with no problems.

You should always ask your doc about side effects and how to take your meds. Just remember that the side effects and disclaimers listed on the drug packaging materials are worst-case and were written by lawyers to cover their clients' (pharmaceutical companies) hineys.

[Alysia]

Hi middle sister. I am glad your remission is coming. Thanks God. I couldnt bear Imuran (vomitting & diarhea) and MTX didnt work for me, so rtx was my last hope. 2000mg for active wg. 1000mg as maintenance in remmsion. Every 6 months. The problem might be if I will have a big flare and this "weapon" will not be strong enough, like if you are on mtx and also get rtx when flaring. I dont have another choice. I think that it can be good that you will have both options.

[Middlesista]

Thanks for the information Anne - truly helpful.

[Middlesista]

Thanks Pete - I am back to work so the fatigue and nausea that can happen is concerning - I did fine with RTX other than fatigue for a few days but with MTX it sounds like it will be every week after a dose. I guess I have to at least try it before I can expect doc to look for alternative

[Middlesista]

Alysia - I hope you do not have any flares at all but this disease is so unpredictable.

I am trying to be positive about the talk of a remission but just came back from seeing eye doc due to wicked pain in my eye and they told me to increase prednisone by 10 mg. I talked to the RA on call and she agreed- we are hopeful it is not related to WG. I will call my RA on Monday to see about repeat blood work - just had it done about a week ago and maybe CT or MRI repeats.

Unrelenting this disease is.

[annekat]

Thanks Pete - I am back to work so the fatigue and nausea that can happen is concerning - I did fine with RTX other than fatigue for a few days but with MTX it sounds like it will be every week after a dose. I guess I have to at least try it before I can expect doc to look for alternative

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.

[pwc51]

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.

[Alysia]

Alysia - I hope you do not have any flares at all but this disease is so unpredictable.

I am trying to be positive about the talk of a remission but just came back from seeing eye doc due to wicked pain in my eye and they told me to increase prednisone by 10 mg. I talked to the RA on call and she agreed- we are hopeful it is not related to WG. I will call my RA on Monday to see about repeat blood work - just had it done about a week ago and maybe CT or MRI repeats.

Unrelenting this disease is.

unpredictable, no doubt. Michelle has a great picture of it, wg as a roller coaster.... wild ride for sure. don't be discouraged. there are ups and downs. but you are doing the best you can. and you are a good fighter.