Horrible Reaction to Imuran

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PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/28/2007 10:30 AM (GMT -7)   
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 tongue 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
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 3 mg, actonel, tri-est (compounded estrogen) 7.5 mg, imitrex, cymbalta 30mg, multivitamin, calcium w vit D, fish oil, aspirin


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 7/28/2007 10:41 AM (GMT -7)   
(((Pat))) Gosh hun, I'm so sorry that you had such a bad reaction to the Imuran. I'm worried about you. Your right, what is there left to do? I went to my Lupus support group today and this older lady just started taking Imuran last night and she had to leave early because she was extremely fatigue and I could tell she wasn't feeling well either. They need to hurry up and get us another med for Lupus, one that doesn't give us the terrible side effects or cause more problems. I'm thinking of you and I'm glad you are going to take it easy and get lots of rest. Listen to your body. I'm keeping you in my thoughts.

Take Care
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


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hdgott
Regular Member


Date Joined Jun 2007
Total Posts : 28
   Posted 7/28/2007 2:12 PM (GMT -7)   
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

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/28/2007 6:39 PM (GMT -7)   
Pat, I'm so sorry about what happened to you. I get so frustrated that most of the meds used to treat and control lupus are so hard on our bodies and have the potential to be dangerous. Not only is our disease hard enough on our bodies, but we have to take harsh meds too.

I'm glad to hear that you are getting back on your feet again - I can't imagine how scary that whole experience must have been. Rest, rest, rest, and then rest some more and have fun with your knitting. Make sure you take good care of yourself, especially with your husband being gone.

((((Hugs))))
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/28/2007 10:20 PM (GMT -7)   
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.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


MGeddes
New Member


Date Joined Jul 2007
Total Posts : 18
   Posted 7/30/2007 8:53 AM (GMT -7)   
Patty,

Sorry to hear about your reaction to Imuran.. It almost killed me! I was taking it for 6 weeks and then had a severe reaction. Lots of vomiting. I dehydrated in 45 minutes. Had to call the ambulance. When they picked me up my blood pressure was 60/30. I was going into shock. I can relate to your frustration with the meds. I just started taking cellcept and actually feel pretty good on it. The only thing is I feel like I am flying all the time. A little trouble sleeping.

I hope you feel better soon!

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 7/30/2007 9:13 AM (GMT -7)   

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


God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
 
When things are really dark look up. You can see the stars.
 
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/30/2007 4:21 PM (GMT -7)   
Thanks everyone for your kind words. MGeddes, I'm sorry you also had such a bad reaction to Imuran. At least we know what drug not to try again!

I'm feeling much much better and yes, Carol, I'm doing a lot of power resting and knitting! I had planned to do next to nothing this week but felt so good today that I actually spent all day working in my office. I usually drag myself in there and rush through the emergency items and drag myself out in a couple of hours, but today I actually enjoyed myself. Kind of like old times. I can't account for the improvement in how I feel, but am I complaining? I don't think so!!!! But you'd better believe I'm going to keep taking it easy because I want to keep feeling this good.

Carol, I'm with you and wish someone would come up with a magic pill to make us all well. Thanks for caring.

Love you guys,

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 3 mg, actonel, tri-est (compounded estrogen) 7.5 mg, imitrex, cymbalta 30mg, multivitamin, calcium w vit D, fish oil, aspirin


Trying2BFree
Regular Member


Date Joined Oct 2005
Total Posts : 251
   Posted 7/30/2007 7:28 PM (GMT -7)   

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??


Jeannie ~
   Mom to Ty (4 yrs old)
   and 3 Shelties
 
SLE diagnosis 10/05 now changed to RA 3/06, Endometriosis 5/05, PCOS 1990
Meds: Metformin ER 1500mg (PCOS); Loestrin BCPs (Endo); Methotrexate 17.5mg (RA); Metanx 5mg (RA); Remicade (RA); Lunesta 2mg (as needed)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/30/2007 8:49 PM (GMT -7)   
Jeannie, I've never heard of Arava. I'll have to look it up. I don't see it on your list -- have you taken it in the past?
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 3 mg, actonel, tri-est (compounded estrogen) 7.5 mg, imitrex, cymbalta 30mg, multivitamin, calcium w vit D, fish oil, aspirin


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/1/2007 7:17 PM (GMT -7)   
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
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
 
When things are really dark look up. You can see the stars.
 
 
 


Trying2BFree
Regular Member


Date Joined Oct 2005
Total Posts : 251
   Posted 8/2/2007 8:13 AM (GMT -7)   
I've never taken it Pat. I've read about it in my Johns Hopkins RA book and there are a few on the Arthritis Foundation's forum on it.
Jeannie ~
   Mom to Ty (4 yrs old)
   and 3 Shelties
 
SLE diagnosis 10/05 now changed to RA 3/06, Endometriosis 5/05, PCOS 1990
Meds: Metformin ER 1500mg (PCOS); Loestrin BCPs (Endo); Methotrexate 17.5mg (RA); Metanx 5mg (RA); Remicade (RA); Lunesta 2mg (as needed)

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