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Do you take Imuran?

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Posted 9/14/2007 7:36 PM (GMT 0)
My rheumy thinks I might have organ involvement and we're waiting for blood tests to come back. He told me that if I did he was going to put me on Imuran and a low dose of pred. I'm the type of person that needs to prepare myself. I was hoping that anyone who is on the Imuran could post. Do you have any side effects on the medicine? What organs are you being treated for? Does your life revolve around taking the medicine or do can you just go on as normal. I would appreciate any clues as to what I might be in for.

Thanks!

Gidget^
Posted 9/14/2007 11:12 PM (GMT 0)
Mine case is rare. I had lost all my hairs and my WBC was low to almost 0. I had to be in hospital for 10 days. Not all people are like me. I heard my Rhumty said that I am so rare and most patients take the Imuran quite well. I did not hv organ involvement, but I had been taking Pred for so long that the doc wanted to cut me down, so they put me on Imuran. I am now on cellcept, and doing quite alright.
Posted 9/15/2007 1:16 AM (GMT 0)
    I have not experienced significant side effects from Imuran at all.  I'm sure it depends on the dosage,  I only take 50mg twice daily.  God luck and God Bless you,  Judy

Posted 9/15/2007 2:30 AM (GMT 0)
Hi Gidget, welcome! sorry to hear you have lupus but you have definitely come to the right place, there are a lot of caring people here.

Lupus attacks my GI tract, I started Imuran in May 2005 and it has worked wonders for me. I started taking 50mg a day (=1 tab) and then about a year later we had to up it to 100mg (=2 tabs). When I first started it my doctor had my labs (CBC, kidney and liver function, etc) checked every two weeks for 6 weeks then when she saw it was working well for me and not lowering my labs she has me going every other month.

I take all of my meds at night after dinner and I have no problems at all. With Imuran you have to make sure to take it with food and a good meal I might add or you could have some nausea, that's also why I take mine at night. The reason I mentioned eating a "good" meal is there have been times I just wanted a bowl of cereal and I would take my meds and have a lot of nausea. Good luck to you and take care :-)
Posted 9/15/2007 10:08 PM (GMT 0)
Stacie

You mentioned that Lupus attacks your GI tract and I might have asked you this before, but what does that manifest as? Are there specific symptoms that you have as a result?

thanks so much

darlene
Posted 9/16/2007 1:25 AM (GMT 0)
Darlene,

My GI symptoms were: diarrhea, cramps, nausea, etc. I had been having these problems, which started overnight since 2002. I found out I had Celiac disease (gluten sensitivity) in 2003 and didn't improve as much as I should have after going 100% gluten free. I finally found a doctor that would listen to ALL of my symptoms and in 2005 I found out what was causing all of my GI probs... lupus. My rheumy says she only has a few patients like me tongue . Feel free to ask me more questions.
Posted 9/17/2007 11:12 AM (GMT 0)
Gidget,

Good luck with the Imuran. The two meds that keep me going are my Imuran and prednisone. In the beginning, I had some trouble adjusting to the Imuran -- stomach cramps and nausea, even taking it with a large meal. But now I am "fine". I take both my 50mg tablets in the morning with my prednisone and wellbutrin (this after taking prilosec when I first wake up) after I eat. I prefer to get my taking meds over with in the morning so I don't have to think about it during the day. I wouldn't say I go about my day as "normal" (and don't expect to every again -- guess I'll have to redefine "normal") but I do get to go about my day without thinking about taking meds.

I have no side effects that I know of. I am unhappy thinking I have to take meds for the rest of my life but the alternative (I was basically non-functional) isn't something I can live with. *sighs*.

You should be fine though others here have had bad experiences.

Stay Strong,
Sue
Posted 9/18/2007 4:06 AM (GMT 0)
I was on Imuran for about 10 months. I had side effects also - hair loss, nausea, etc. I was eventually taken off of it in July because my WBC had been progressively dropping. If your body can tolerate it, I think it's a good treatment option. If not, I guess like me, you will move on and try something else!
Posted 9/18/2007 6:35 PM (GMT 0)
hdgott,
How much were you on a day? It's strange how one person can handle the drug and the next person gets sick. You think that they'd be able to give you something to help with the nausea. They've come a long way with treating lupus and our chances are much better than they would have been 40 years ago but it is still frightening. I'm the type of person that likes to know what lays ahead for me if ... it's much easier for me to prepare myself mentally if I know what they next step might be. I have hair that's a few inches short of my waist and it's very thick. I guess I'm trying to prepare myself if there is going to be significant hair loss along with the other side effects.

Thanks!
Posted 10/2/2007 3:49 PM (GMT 0)

hi gidget.

i have been on pred and imuran for 4 months, before that 6 months.  no side effects from the imuran, just be careful what time of day you take it.  i would suggest at bedtime.  just makes you very tired but takes about 3 months to fully take effect.  the bloodwork is crappy but as long as you don't mind needles, you will be fine!

Posted 10/4/2007 8:16 AM (GMT 0)
I've been on Imuran for about two years now, and it's been wonderful. Combined with the prednisone and the plaqanel, my lupus has been quiet and manageable for the most part. I think the only side effects I've had are a decreased potassium level (and I take a horse pill for that), blood clotting issues (and I take coumedin for that) and farting at night (which, I guess, me going in another room takes care of that. lol)

Posted 10/17/2007 11:39 PM (GMT 0)
Up you go for Peilan!!
Posted 10/19/2007 4:04 AM (GMT 0)
I've been taking Imuran (2 tablets once per day) for my lupus since Jan 07. My doc took me off of Plaquenil in April 07 after I had an allergic reaction to it. So, now I only take Imuran, and it's working perfectly! My symptoms and pain level have decreased tremendously. I went from a pain level of 10 (out of 10) in Jan to about a 2 now. My WBC did drop after I started the Imuran. But, I've had blood work every four weeks since Jan 07. At my last appt. (end of Aug), my doc said he's not too worried about my number. He's so NOT worried that my next appt. is in Nov 07. But, he did say I have to get a flu shot! Also, I did have a lot of stomach problems for about 6 months (nausea, cramps, diarrhea, acid reflux), but it's much better now. I take my pills everyday right after lunch, along with one tablet of Prilosec... I guess that helps, too. For me, the benefits of Imuran outweigh the side effects... Hope this helps... :)
Posted 10/20/2007 4:27 AM (GMT 0)
Thanks Caffiend for your reply. I think Imuran will be their next attempt as I was at the hospital this evening with hives and the ER dr thinks it's the Plaquenil. Hopefully I will have few if any problems being on the Imuran. I've already gotten my flu shot so I guess I'll be all set! Thanks again!
Posted 10/22/2007 2:04 AM (GMT 0)
There's a blood test my rheumatologist did (TPMT) that indicates if you are more likely to have a reaction to Imuran. It's a genetic test. Here's a review article for your rheumy that might be useful...

Rheumatology 2004; 43: 13-18
Relevance of thiopurine methyltransferase status in rheumatology patients receiving azathioprine
G. P. R. Clunie and L. Lennard
"Azathioprine (AZA) is widely used in the management of rheumatological diseases. Despite its efficacy, AZA can often cause bone marrow suppression, notably leucopenia, which has been recorded in up to 17% of patients taking AZA for rheumatoid arthritis, though this can be considered clinically significant in about 3% overall. Severe myelosuppression, associated with abnormal AZA metabolism, is linked to the thiopurine methyltransferase (TPMT) genetic polymorphism. TPMT status can be assessed prior to AZA treatment by measuring enzyme activity or genotyping techniques. Analysis of recent data suggests that by optimizing the AZA dose on the basis of TPMT status testing (with a substantial reduction in dose for patients homozygous for mutant TPMT alleles), a reduction in drug-induced morbidity and cost savings can be made by avoiding hospitalization and rescue therapy for leucopenic events. In this article we review the pharmacogenetic and clinical implications of the TPMT polymorphism, emphasizing its relevance to rheumatologists managing diseases with AZA."

Thanks AlwaysRosie!
So far I have not had any severe side effects from Imuran - I was losing hair before (SLE activity) and since starting Imuran have not seen any increase in hair loss. Now all I have to do is wait and see if the Imuran helps!!! :)

Peilan
Posted 11/1/2007 10:39 PM (GMT 0)
Hi all,

This thread was very useful for me. THanks everyone for writing their experiences!

I have been taking Imuran for 3 weeks now. So far, bloodwork-wise I am fine. My problem is the nausea. I am nauseous and queasy most of the day though I usually start feeling better in the evening. I take my 50 mg Imuran at night with dinner. Do the nausea side effects usually occur shortly after taking the medication? It's strange that I feel better in the evening, perhaps this is due to taking my prednisone dose in the morning? But, back to the nausea. I've been more nauseous these past 2 weeks (3 weeks on Imuran now), but am not sure how to correlate it as I take the Imuran at night and I am nauseous starting in the morning and through the late afternoon. (BTW, I also take Plaquenil, Nexium, and Synthroid).
Posted 11/2/2007 12:31 AM (GMT 0)
Hi Peilan,

 

Yes, it is very common to continue having nausea with Imuran.  The good thing is that it usually goes away about 6 weeks into treatment.  It takes 4-6 weeks for the medication to start working in your system. Long time!  So your nausea is totally normal.  I had just a few days of it myself, so it's different for everyone.  Keep going with it.  If you just can't handle it and it lasts more than 6 weeks, definitely tell your rheumy. It might not be the right med for you.  But give it a good try!

 

Ginny

Posted 11/2/2007 1:30 AM (GMT 0)
I was on Imuran for over a year. My only problem was nausea- BUT I have tons of problems with nausea anyway. Witness my pregnancies which cause such severe nausea I needed IV fluids at least 4 times for each until this one- so far the doctors are aggressive in handling the nausea. I have 2 scripts for nausea this time. One for day time and one for bedtime. I did so well, my liver had inflammation and the Imuran handled it- when we tried to wean me the first time my liver function showed inflammation again but when I went back to 100mg for another 8 months within 3 weeks the liver tests were normal again. Now I am off because I got a remission. I need to ask for liver function testing tomorrow- you reminded me so THANKS!!!! I will go back on Imuran after delivering because we expect the lupus to flare again and aggressive treatment will get it under control really fast. Plus I have to be on prednisone if off Imuran. I hate prednisone.
Posted 11/3/2007 12:47 AM (GMT 0)
Thanks Ginny and RedRose! Your input gives me more positive energy to get through these next few weeks (3 weeks and counting on Imuran!).

One more question on the nausea, does it depend on what time of the day one takes the med? It's been pretty consistent, I am nauseous during the day and feel better in the evening. I can even say sometime between 5 pm and 7 pm I start feeling better (I take my 50 mg Imuran around 7-8 pm every night).

THANKS!!!!!!
Posted 11/3/2007 1:06 AM (GMT 0)
Hey there!  I'm glad you're feeling more positive!  If you can get through the next few weeks, you'll be glad you stayed on it.  For me, I've found it to be a miracle drug!

 

Well, you could ask your doctor if taking it during the day would be a better idea.  To help you stay nauseous free during the day, but then you might not sleep well if you're nauseated.  It's super important to get a good sleep.  A bit of a catch 22 isn't it!

 

Your doctor might be able to give you something like Gravol for the nausea?  It's worth asking about. 

 

Keep that positivity!

 

Ginny

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