Horrible Reaction to Imuran

I went to see my rheumy on Thursday and she took me completely off CellCept because my creatinine is still elevated and she suspects it's a result of taking the CellCept. She prescribed 50mg of Imuran twice a day and said we'd increase it later. I took my first pill that evening and started getting nauseous an hour or two later, but kind of expected that, but within another couple of hours was so sick throwing up etc. that had my hubby not been here I would have had to call an ambulance. I have never felt that sick before. I lost control of some of my bodily functions and couldn't get up off the floor without help. I knew I was having a reaction to the drug and that's why, after three hours in the bathroom I finally woke up my hubby. It was very frightening. I called the rheumy the following day and she advised me to stop taking the Imuran (as though she needed to tell me that) and to keep taking the cellcept but to cut in in half again. This is, to say the least, frustrating. I'm finally feeling better today and am resting and drinking lots and lots of water.

I'm wondering what's next. If the CellCept keeps my kidneys from functioning well, the Methotrexate makes me exhausted and nauseous four days out of the week, and now with the violent reaction I had to Imunran, I don't know what else there is to take. I've been slowly increasing the prednisone, which I don't want to do, and my rheumy doesn't want me to to either, but I don't know what options I have at this point.

I've been trying not to take any pain meds because they make me so tired, and between the fatigue from lupus, and the side effects of tramadol, lunesta, and neurontin, it's hard to tell how much of the fatigue is due to lupus and how much is due to the meds. I wish I could get off all these darn meds.

My hubby left this morning for a week so I'm going to do some (to borrow Hippi's phrase) power resting for the rest of the week and get some major knitting done.

I haven't been on the forum in a few days and don't really feel up to answering everyone's posts right now, but I've been reading them and will be back on real soon. I hope you are all having a great pain-free weekend.

Love,

Pat

I'm sorry, Pat! Imuran is what I was on until it was lowering my blood counts. I also had horrible side effects from it, but not quite as bad as it sounds like your's were! I would be nauseous and fatigued all the time at first. Occasionally I still had them towards the end. I also lost a lot of my hair. I'm not on it right now, it's been two weeks since I stopped, so I have had side effects from withdrawal I guess? Anyway, I'll be thinking about you! Hang in there!

Heather

Pat--
I'm sorry you had such a bad reaction to the imuran. I have bad reactions to drugs alot due to my liver and it's so frustrating. You are right in wanting to take less. I'm not a big fan of neurontin, its so very hard on the liver and most people I've talked to say it doesn't really help their pain, they just feel too blah to do anything about it or make it an issue. I take klonopin instead and its a benzodiazapine and I'm very addicted to it, but it has less side effects than neurontin, which I'm allergic too, and it isn't like killing gnats with a sledge hammer. I take a really low dose and have been on that dose for over five years now. I take 1 mg at night and my doc gives me extra pills to use for stress or muscle relaxation or in case my synthroid and estrogen and what ever other hormones I'm on or tapering off are getting me anxious. It works better for restless leg, many people tell me. I don't know what actonel and triamterin are, but anti-inflammatories (NSAID and COX2 inhibitors) are really bad on the liver and when the liver is stressed out by too many drugs, eventually it just starts rejecting stuff and you get the explosive diarrhea and hives and all the bad feeling of being on too many drugs, flu like feeling and fatigue and yellow in eyes and under tongue. I cannot take methotrexate because of my moderate liver disease, there is no way I would tolerate it. If imuran is something you think might help, then maybe limiting some of these other drugs, doing lower doses, might help you to be able to take it. It might be the combination of it all. I know I couldn't take all that strong stuff. I hope they check your liver levels too, because gi is liver, not kidneys. Cellcept, I thought, was more processed by kidneys, the rest of them are processed by the liver. I hope you can take what you need to take, and that they do the liver testing they are supposed to do and take it seriously. You might not be allergice to the medication, maybe just overloaded and if they cut back some of your other meds to baby doses you could take the ones you need. I'm sure this was very very frightening, these meds are so strong and then when you have hashis that doesn't help mentally either. I hope you feel better soon and can take the stuff you need. Sending best wishes and prayers your way.

Hi Patty, I hope you are getting some power naps in and getting some knitting done! A week to yourself huh? It's a good thing he was there when you had such an awful reaction. That's pretty scarey. I don't know about all the drugs that are out there but I hope they come up with somthing that helps. When you feel a bit stronger please post how you are feeling. In the mean time enjoy your week!

love ya

carol

How terrible!  I'm glad you are feeling better.  You just never know when something like this is going to happen.  I'm glad hubby was home to help.  Rest up!

Oh, what about Arava? Or is that just for RA??

Hi Pat, I noticed you're taking fish oil. I was telling my son (the health freak) about my tummy problems and stuff. He suggested I start taking fish oil I was wondering what you take it for? I hope you are continuing to feel better and getting some good R and R.
love ya
carol