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Happy Camper
07-10-2014, 05:48 AM
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
07-10-2014, 07:14 AM
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
07-11-2014, 11:26 PM
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
07-12-2014, 01:18 AM
Good luck this time around.

annekat
07-12-2014, 02:17 AM
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
07-12-2014, 05:50 AM
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
07-12-2014, 05:58 AM
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
07-12-2014, 06:00 AM
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
07-12-2014, 11:06 AM
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
07-12-2014, 01:38 PM
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! :)

annekat
07-12-2014, 03:05 PM
I would go ahead and have a couple of drinks now and then. I know others would argue about this, and have. I have a drink occasionally and nothing has shown up in my blood work. I'm not a big drinker and haven't been drinking at all lately. I just think sometimes you need to live a little, with moderation and caution. One drink on a special occasion is not going to hurt you, I don't think. It is up to each person to decide for themselves, and I have nothing against those who have decided to abstain altogether while on MTX.

LisaT
07-12-2014, 11:56 PM
I have the same dual diagnosis as you... And my rheumy has just increased my Imuran in the hopes that it will help my symptoms and help me get off the prednisone, which I'm trying to taper and am now down to 8 mg. My labs look ok other than my usual anemia and a couple of other things slightly off in the haematology panel. I can't tell you yet whether this will be successful, but he seemed to think it worth trying rather than any stronger drug when my vital organs and labs are okay and it's more about trying to get me back some more quality of life... I hope you and your doc are able to get it figured out and that it helps you. I was unable to tolerate methotrexate because of the nausea. I still get nauseous when I think about it or say its name. Weird. My rheumy told me it's a known phenomenon of mtx. 'Anticipatory nausea'. I used to feel sick knowing it would soon be time to inject it... Felt like I was pregnant the whole time I was on it. I do better on the Imuran. Good luck! Keep us posted.

Happy Camper
07-15-2014, 12:09 AM
Thx for all your input. Its greatly appreciated. I started MTX last night. Going to give it another try. So far not too bad. But I'm only on 10mg, working my way up to 20mg. My rheumy told me I could have 2 drinks a week. I don't drink often. But maybe once a month I would like to be able to have 2-3 drinks with my girlfriends or husband.

annekat
07-15-2014, 03:20 AM
Thx for all your input. Its greatly appreciated. I started MTX last night. Going to give it another try. So far not too bad. But I'm only on 10mg, working my way up to 20mg. My rheumy told me I could have 2 drinks a week. I don't drink often. But maybe once a month I would like to be able to have 2-3 drinks with my girlfriends or husband. Aha! You got the green light for having a drink or two! But of course the important part is that you are tolerating the MTX so far this time. Best of luck on that, and hope it knocks out the flare.