Imuran: side effects, anybody?

Call your dr ASAP. Imuran has been linked to hepatotoxicity, which is damaged liver cells.

Good luck
Kelly

Hi Alex, In my case, my severe abdominal/liver pain and gi problems were apparently due to the ivig brand, once it was changed my pain has gone away. I do get bloodwork every three months-liver enzymes and kidney function in addition to the CBC with platelet count to monitor the effects of my Imuran and ivig. Kelly is right, call your physician asap and get examined and get bloodwork to see how you are doing. Maybe he will change you to an different immunosuppressant(side effects are the same), but you may respond differently or he can reduce your imuran dose. Good luck Alex. Emma

Hi Alex,
My husband was started on Imuran last December (he is on IVIG monthly), and within 12 days started to complain of back pain and discomfort. I think it started about a few days after he was to double the dose. He then started spiking a temperature. By time we drove into the hospital he had a temp of 104 and was almost delerious. He developed sepsis and was in hospital for a few days and was very ill. He refused to take it again. So he remains on the IVIG. Neuro. wants him to try Cellcept, but we are balking. There are no clinical trials done with CIDP and immunosuppressants proving its efficacy. Most neuro’s seem to be prescribing them based on anecdotal experience of patients improving on them and then it allows the IVIG to be decreased or stopped which is a cost issue. I guess my question with those that have success with the immunosuppressants is it because of the immunosuppressant or is the CIDP conincidentally in remission? As many diagnosed with CIDP have a relapsing remitting form. Sort of the chicken or the egg story. I am skeptical about the benefit of immunosuppressants and I am horrified by the potential life threatening side effects.
Laurel

Alex, I forgot to say if in doubt at all with the pains and it sounds like you are in doubt go to a hospital emergency room. Sepsis can be life threatening in a short time. When my hubby walked in and described his symptoms and they took his temperature, he was surrounded immediately by doctors and nurses starting IV’s, taking xrays, drawing blood etc. They viewed as a big emergency.
Laurel

Don’t wait until Monday. Call you dr & leave a message with his/her answering service today. The dr may want you to make a quick trip to the local ER to get the blood tests started early.

This is something you DO NOT want to mess with!

Kelly

This is something you DO NOT want to mess with! as Kelly said, my husband developed pneumonia and he ended up in intensive care for 11 months and he is still on a ventilator …..all this after a few weeks on azathioprine. Take good care of yourself, don’t want to scare you This is something you DO NOT want to mess with!

Daniela,
My hubby had a consolidation in the lung after he spiked that high temperature–which is basically a pneumonia. They caught his early as I was so paranoid when he complained of back pain and started getting an elevated temperature that were on the road to the hospital before he blink. Imuran scares the pants off of me. And it appears that most doctors due not routinely do this test which can determine sensitivity to Imuran. ” TPMT is measured in patients who are about to start treatment with a thiopurine drug, such as azathioprine, or if the doctor suspects that the patient is experiencing side effects due to TPMT deficiency. The test identifies individuals at risk of developing severe side effects, such as lowering of blood cell counts.”
Laurel

I reread all these posts before I comment-an allergic reaction to a drug happens quicker than 1.5 mo Alex. If the pain is a new thing and is acute, then I agree with the others to go to ER and get the blood tests to determine what is happening; something is wrong. I also agree with Laurel on the chicken and egg thing. I have been on Imuran for 8 years since initially diagnosed with cidp and did get admitted 3 years later with a sepsis, had a liver biopsy, 2 EGD’s and an ERCP, and the internist, neuro, and GI specialists determined my liver changes were due to estrogen and cholesterol meds and immediately stopped those and my liver enzymes have been checked every 3 months and have remained normal for the last several years. And remember too, that the side effects to ivig are life threatening also and can happen anytime, so the best I can say is each of us reacts differently, but get checked out now-don’t wait till Mon. Alex–any side effects that include pain like you are having need to be checked out immediately-don’t accept “feels like poison, little things I can tolerate.” Your pain is not little!! Emma

[COLOR=black]Unlike some of the others who report bad effects from azathioprine, I have had no noticeable side effects. As Laurel points out, some people are more sensitive than others are. I would be surprised if azathioprine was already giving improvements, as it normally is considered to take six months to show much immunosuppressant effect. Still, I am glad you are noticing improvement.[/COLOR]

[COLOR=black]When I first started taking azathioprine, I had weekly liver (ALT) tests for the six weeks. I increased the dose at the end of each week until I was at my maximum. I then had every other week tests for another few weeks and finally monthly tests until it was six months after I started. If we had seen much of a rise in the ALT, we would have stopped the increase and taken a step down. How have your blood tests been? These blood tests are the standard protocol for starting azathioprine. I quote from the Roxane Azathioprine Prescribing Information: “Complete Blood Count (CBC) Monitoring: Patients on Azathioprine Tablets USP, 50 mg should have complete blood counts, including platelet counts, weekly during the first month, twice monthly for the second and third months of treatment, then monthly or more frequently if dosage alterations or other therapy changes are necessary.”[/COLOR]

[COLOR=black]Digestive problems are not unknown with azathioprine, but if they get to be bad, you need to make a prompt appointment with your doctor. The liver pain, especially if it is sudden, needs to be addressed promptly. Even if it is mild, I agree with Kelly, page your doctor and explain you concerns. Does your health plan have and urgent care clinic on the weekends? If so, try there first, even before your doctor calls you back. However, if the pain increases, or you start to feel sick in any other way, a trip to the ER will be worth the peace of mind, if nothing else.[/COLOR]

[COLOR=black]MarkEns[/COLOR]

Alex:
I had been reading about your problems and the answers from this site which I agree with. Was wondering what happened when you did go to the doctor.

Did he take any blood tests and what were they? See, my husband also was on imuran plus prednisone and did get sepsis. I remember now him saying his back hurt. So Now I know what it was. It just happened that he woke me up in the middle of the night with the shakes. He could not stop or could not get warm.
I took him to the emg right away. Cannot believe how long we had to wait. At least 2 hours just to be seen and then at ll:00 admitted to a room.

If he goes on either of them again I am going to insis his blood be taken 2 times a week for at least a month and am saving this thread to show him why(Our Dr.)
His nurse said if we had gone to his hospital he could have seen him. I told her I did not know if he would be dead by then so I went to a closer one.

Anyone what happened?
Joanf

I’d really like to know what happened, also. By the sounds of this…I DO NOT want to try imuran. My dr said I’ll go on it and or, not sure if both…cellcept with ivig if I dont improve after two more ivigs.
But, I am going to go back to the first nuero. Just the thought tho…scarey.

I hope Alex faired well.

Stacey

[QUOTE=Alex]Hello everyone,

Thank you for your responses. I stopped taking Imuran, and my liver got back to normal; took me about two weeks.
The only treatment I’m getting now is IvIg, 4 days at 45 g/day every 5 weeks. It works to some degree, but my condition is gradually getting worse. Apparently, I’m having a so-called progressive (or is it regressive?) form of CIDP. Actually, right now I’m lying on the hospital bed, and the pump is humming away; fun familiar to most of you.

I am still resisting the intention of my doctor to put me on prednisone. Side effects scare me, especially the weight gain and appearance change. I have already changed quite badly since it (CIDP) started three years ago – the way I look, inability to walk, climb stairs, concentration problems, constant fatigue etc. Not good for my business (I’m a GYM owner, lucky me). So getting a “moon face” is kind of out of the question.
If you can share with me your experience of prednisone helping you without causing such side effects, it will be most helpful.

Good luck to you all.

Alex[/QUOTE]
Hi Alex,
From all my reading, it seems that pulsed IV steroids are the way to go if you have to take steroids. Here is one quote, but there are lots of articles out there. “The required prolonged prescription of steroids may lead to the well-know and sometimes hazardous side effects. These can be avoided by monthly pulse treatments with intravenous Methylprednisolone, 500 mg. on 3 consecutive days, which can be equally effective.”
Good luck and I hope you start doing better.
Laurel

[QUOTE=Alex]
I am still resisting the intention of my doctor to put me on prednisone. Side effects scare me, especially the weight gain and appearance change. I have already changed quite badly since it (CIDP) started three years ago – the way I look, inability to walk, climb stairs, concentration problems, constant fatigue etc. Not good for my business (I’m a GYM owner, lucky me). So getting a “moon face” is kind of out of the question.
If you can share with me your experience of prednisone helping you without causing such side effects, it will be most helpful.
Alex[/QUOTE]

I am on pulse steroid therapy. I am on only 250 mg/week, whereas my Dr normally puts people on 500mg/week. Part of the reason is that I am on the petite side. My Dr’s protocol for pulse steroid therapy is having a person take steroids (I started off with IV and then went to orally) once per week. The once a week pulse therapy is enough to suppress the immune system yet the side effects short term are minimal. After 4 months I weigh the same now as when I started, I have no moon face, my blood pressure has stayed normal, my glucose has stayed normal, etc. Prednisone has a relatively short half life and it is out of your system in less than two days. That is the reason why a person does not get the same amount of side effects as a person taking it everyday or a few days a week. Over time though, the effects can build up. Only knowing my situation and no one elses, if I had to do it all over again, I’d stick with a once a week program vs everyday or 2-3 days a week.
My Dr worked with another Dr and wrote up a few papers on the subject (pule steroid therapy once per week), and I know that he was pleased with my lack of side effects. He sees a lot of good things come with the once a week.
Kristin

Hi Kristin,
Just trying to get a picture of your med. regime. I keep learning new things. I was under the impression that pulse steroids were always giving IV, but I gather not from what you say. So you take prednisone(or is prenisolone) in pill form at a dosage of 250mg. weekly? And you say that you started out IV and then went to oral. Is that standard operating precedure to sort of jump start the effect when you go to oral? Do you have any reference sites for your doctor’s papers that he wrote? Thanks.
Laurel

I had been taking Imuran 200mg daily for over a year until last month. My neuro weaned me off due to elevated liver functions. Prior to taking the Imuran I took Cellcept 1gm daily for about a year with no problems. I also was never sure if I was having any positive effects from either medications. However, now that i have been completely off for about 3 weeks now, I do feel a little worse overall.
Peace,
Flower

[QUOTE=laurel]Hi Kristin,
Just trying to get a picture of your med. regime. I keep learning new things. I was under the impression that pulse steroids were always giving IV, but I gather not from what you say. So you take prednisone(or is prenisolone) in pill form at a dosage of 250mg. weekly? And you say that you started out IV and then went to oral. Is that standard operating precedure to sort of jump start the effect when you go to oral? Do you have any reference sites for your doctor’s papers that he wrote? Thanks.
Laurel[/QUOTE]

My Dr started me off with a few weeks of IV (solumedrol) to make sure that I was able to tolerate it and then switched me to oral (prednisone) to make it easy for me to take. It is the way that he does it, he said that there was no difference when I questioned him on it. My Dr use to have papers listed on the clinics site, but now I can’t find them of course since someone is asking…:(
Kristin

[QUOTE=Kristin]My Dr started me off with a few weeks of IV (solumedrol) to make sure that I was able to tolerate it and then switched me to oral (prednisone) to make it easy for me to take. It is the way that he does it, he said that there was no difference when I questioned him on it. My Dr use to have papers listed on the clinics site, but now I can’t find them of course since someone is asking…:(
Kristin[/QUOTE]
Thanks for the info. Kristin. If you find the site, can you let me know please.
Laurel