Relaspse/Meds

[Happy Camper]

Hi everyone,

I was diagnosed in 2010 with sinus/aggressive lung involvment, went into remission with Cytoxan/Pred. I was on Imuran for 3 years and relapsed Nov. 2013 with lung involvment. I had 4 RTX infusions/Pred. I'm back in remission YAY! But now I'm trying to get back on a maintenance med and I'm having big problems. So first I tried MTX and I had terrible headache and nausea/vomiting. I switched over to cellcept and I had terrible diarrhea/cramping and was constantly lightheaded. I stayed on the cellcept for 4months trying to see it I would adjust to it, but the side effects just got worse. I was completely off the pred as of last month, but my Dr. Langford had me stop the cellcept, back on 20mg of Pred and they are deciding what to do for me. My question is: I had no side effects from the Imuran and would like to give it another try. ( I was on a very low dose 75mg- bc my WBC would drop when I went higher. I was also on Bactrim at the time and think that made my WBC low also.) I think that I was on too low of a dose and that's why I relapsed. So has anyone every relapsed on there maintenance drug and then went back on that same drug and stayed in remission for a long time? I appreciate any help. This is so frustrating.
Thanks
Tracy

[annekat]

I haven't ever been told I was in remission but have had times when things were going very well. I had a flare in winter of 2013 after having been on a maintenance-type dose of 10mg. of MTX for a few months, after having gotten off CTX. I and the doc believe the dose of MTX was too low, and it was raised to 15mg. That has been fine, knocked out the flare and put me back to "normal", with no problems with WBC that I remember. This winter I had another small flare. I seem to get them in the winter. This time, we kept the MTX dose the same and just raised the pred. I'm tapering that now and am feeling a lot better. So yes, without being familiar with Imuran, I'd say too low a dose of a maintenance drug can cause a flare or relapse.

[Happy Camper]

Thanks for your response. I guess I'm going to give the MTX another try. Starting at a lower dose and working my way up. Hopefully I can tolerate it better this time

[windchime]

Good luck this time around.

[annekat]

Thanks for your response. I guess I'm going to give the MTX another try. Starting at a lower dose and working my way up. Hopefully I can tolerate it better this time

Or you could go back on the Imuran, at a bit higher dose, or work up to one, since you had no side effects with it compared to the MTX. I don't know that one is better than the other, although I don't know whether the WBC is more of a problem for you on Imuran than MTX. Your doc can advise you on all of this. I guess if the WBC is the issue then I can see why you'd want to try the MTX again. People do get used to the nausea, it goes away, and you can split the dose over 24 hrs to lessen the effects. Good luck.

[Happy Camper]

Thanks. That's what they said about splitting the dose. I guess they think the MTX will help control my RA also. I hope so. Getting in remission was the easy part for me, now about 8 months of all this crap.LOL! sucks

[annekat]

Thanks. That's what they said about splitting the dose. I guess they think the MTX will help control my RA also. I hope so. Getting in remission was the easy part for me, now about 8 months of all this crap.LOL! sucks

My neighbor has RA and was on MTX for abut 12 years, and it helped him. Eventually, his liver numbers started to look bad on his blood tests, which is something they will always monitor for. So now he is on something else, and I don't know what, but it took that long for the MTX to be a problem.

[lag713]

I also recommend taking it after dinner and breakfast. I had some stomach problems when I first started on MTX. I worked up the dosage slowly and split the dose in half so I took half after dinner and half after breakfast. It was nice to sleep through some of the discomfort. Eventually, the side effects dissipated so I take it all after dinner. I hope you're taking folic acid or leucovorin with it (12-24 hours after mtx) to help with side effects. I started losing some hair and so I was bumped up from folic acid to leucovorin.

You need to take what works but I do think the relapse rate is better with mtx (longer time to another flare) than imuran (shorter time to another flare), so MTX seems worth giving it a try.

[Happy Camper]

Thanks for the tips on taking the MTX! I will defiantly try splitting the doses if I feel sick from it again. I'm worried about hair loss and I do like to have the occasional few drinks. Which I'm told is a no no

[lag713]

I agree that is hard to give up drinks. I'm 27 and in grad school full time so many of my social events include alcohol. I feel left out sometimes because I can't drink. I find that I can usually go for coffee, iced tea, or seltzer as alternatives but it's not the same. You can have a bit to drink (maybe 2 drinks per month) although none is recommended. Some people drink weekly however. You just need to remember that mtx is tough on your liver and you don't want to stress it. Definitely don't drink on med day or the next day or so after. To be honest, alcohol is not a healthy thing to have anyway. Just empty calories!

I don't mean to worry you about the hair loss. It wasn't visible but I noticed I was getting a lot of hair in my brush and in the shower drain. It stopped as soon as I got on leucovorin. I'm on 25mg (max amount for wegs) and have no side effects now.

I hope oped you find the right solution for yourself soon! Good luck & don't give up!