Question re:TPMT testing for sensitivity to Immuran

    • Anonymous
      December 25, 2007 at 12:52 pm

      I have a question about TPMT testing for people before they start on Imuran. In particular I would like to know if there is anyone on this forum that has had it done?

      I wrote the other day about my husband getting sepsis after being on Imuran for two weeks. He went into hospital with chills and fever of nearly 104 and was admitted to emergency where it was felt that he was reacting to the Imuran. He was transferred to an overflow unit in the hospital (much like going into a geriatric holding unit). Even though we had asked to have him assessed by the neurologist on call since he has CIDP, this was not done. His care in the overflow unit was monitored by a geriatric specialist. This specialist came to the conclusion that he did NOT react to the Imuran, and that he had a virus of unknown origin and he told my husband to restart the Imuran this Saturday! He said that if people react to Imuran they typically do so on the first couple of days of going on the drug.

      This is contrary to what I have read about people reacting to Imuran. Typically they react exactly within the time frame that my husband spiked the fever, got chills, and achy joints.

      My husband is scheduled to receive his routine monthly IVIG this Friday. He will not be re-assessed by anyone prior to that, and he will not be assessed on the day of the IVIG. The neurologist is away until January 2nd due to Christmas holidays. And our GP readily admits to not being highly informed on CIDP–so I see little point in him trying to see her to discuss what is going on.

      I have said to my husband that there is no way he is to re-start the Imuran prior to seeing his neurologist. And my next concern is that the neurologist will minimize what he went through and possible agree with the geriatric specialist and say that he should go back on Imuran. But I am very frightened for my husband concerning him doing that as I read on an Imuran site stories by several people that presented exactly as he did. Then their GPs advised them to go back on the Imuran. Two people did this and went into septic shock and died.

      From my reading there is TPMT test that can determine if someone will have a sensitivity to the Imuran. I have copied a number of articles about this testing. And it does seem to be the sensible thing to do prior to him going back on Imuran if he does. But I have this gut feeling that we are going to have a fight with the neurologist over this issue.

      I am hoping that someone on this forum can give me some input about their past experience with this issue. Thanks very much. I did bring my husband home from hospital yesterday afternoon. He looks very tired and ill, no elevated temperature right now. But he has noticed that his right arm which has atrophy and decreased strength is now losing grip and he can’t move his thumb so he is having a CIDP flare up. Sorry to ramble on, but I am very concerned about him, and feel quite alone in this situation i.e. trying to advocate and do the best for him in a somewhat indifferent and chaotic medical system.

    • Anonymous
      December 25, 2007 at 9:18 pm

      I am not aware of anytype of test you can have to see if you are sensative to Imuran. When I first started on Imuran I had stomach issues (if I took it w/o food I would end up in the bathroom). When I called my neuro he took me off of it for 5 days. He re-started me in a lower dose then got me back up to the 150 mg I take now. I have to eat with it still or it gives me some serious gas/diahrrea. Surley your neuro will listen to your concerns. What happened to your husband was serious. There are other immune suppresents out there so mybe he can try one of those. I agree with you he should not take the Imuran w/o speaking with his neuro.
      Good Luck

    • Anonymous
      December 26, 2007 at 12:00 am

      Hi MJ,
      Thanks for replying and for your good wishes. The test I read about is at this site [url][/url]
      I just wondered if it is commonly done. I think we are going to have to head back to the hospital in the morning. My husband now has an area on his arm that is red, hot, and swelling and travelling up his arm. Looks like it was some how related to all the IV’s he had. Since he is so immuno-compromised this is going to get away from us since he is no longer on antibiotics. My gut told me that they cut him loose from the hospital too soon. This sure has been a weird Christmas. A can of soup and dry toast for him as his appetite is so poor. Keep your fingers crossed for him please.