Prednisone, Imuran, etc.

September 17, 2008 at 2:06 am

[QUOTE=joanf]I am the spouse of Bill and I just had to reply. My husband was also on Prednisone and Imuran and did get sepsis. I was told by our neuro that if he got sick go to our family dr. Is this standard or is he lacking in his responsibility. Do most neuros tell you this.

Then after sepsis and a l4 day antibiotic he was then doing ivig and I believe he may have had solumedroil (sp?) . Now on PP and did 2nd opinion but almost 3 weeks and no answer except even before any testing was done he (Dr. Levin of the Clev. Clinic in Ohio).said maybe not cidp so go back to prednisone. PP and Ivig too expensive and will not help you anyway.

At one point our own neuro said he might have to add something to the pp. You will never see my husband on Prednisone again according to him and I do not know anything about any of these other meds like cellcept,etc. but I do know we will check with people here before we do anything like that.I hope you do well Ken and keep us in mind as you go thru with these treatments and what you learn. These sights really help us.
Hi Joan,
I find this forum really helpful, but I have also found that some doctors seem to be quite defensive when we bring up info. that we have learned here so we have to be ever so careful and try hard not to step on toes or egos. And I would say your husband’s neurologist did lack responsibility in your situation–just as ours did in our situation.

When my husband got sepsis from Imuran last Christmas, what a run around we got! The neurologist’s office was closed for Christmas and the taped message said to go to emergency and ask for the neurologist on-call. We did this and got nowhere with that request and hubby was under care of the emergency physician. Hubby was admitted, diagnosed with sepsis, and transferred to an overflow medical unit–never having seen a neurologist even though I even put the request in writing. First doctor said the Imuran precipitated the sepsis. Second doctor said go back on Imuran. Third doctor said he didn’t know for sure and wait and see your regular neurologist. Hubby went to the neurologist about two weeks after the hospital admission and still was very ill and the neurologist said “you have to go to your family doctor for treatment of the physical symptoms”. We left that office and went to the GP. GP on holiday and we got the locum who said she was totally unfamiliar with side effects to Imuran so she couldn’t advise us–just took more tests. We were left bewildered and scared about what to do. And yet the neurologist said that possibly the Imuran wasn’t the culprit and wanted him to try it again. We adamantly refused. And can you believe that there is a blood test that can determine whether people will be sensitive and react to Imuran? And we asked for that test before he went on Imuran and were told it is only available in the States. We offered to go across the line to get it and were told it wasn’t necessary.

I view our experience as our neurologist not assuming appropriate responsibility. Yet we walk on egg shells while trying to advocate for ourselves for fear of offending and losing this neurologist who is considered the best in our area for CIDP. I am a retired registered nurse, and that seems to make things worse in some ways. I know too much and I know too little. The neurologist says things like “well you can monitor your husband for side effects since you are a nurse, and you will know what to do”. Bull feathers! When hubby got sick, I had a hellish time getting him to go to the hospital and by the time we got there he had a crash team surrounding him within 5 minutes because he was so ill. I know for sure if he is forced to go onto some medication like Cellcept or Cyclosporin due to cost (which it seems to come down to for us at this point as hubby is having good response to IVIG), I will ask for directions in writing from the neurologist concerning taking steps in event of side effects. We have sadly learned that GP’s are unfamiliar with the heavy duty immunosuppressants–as are the small town emergency rooms that are often staffed with GP’s. And as you know sepsis can be life threatening within hours even with good treatment.

A little tidbit that I learned recently due to a listeria outbreak in Canada is that patients who take drugs that lower their immunity should not ever eat deli meats. Doctors should be telling that to their patients routinely when they prescribe immuno-suppressants. Listeria is a bacteria that can occur in deli meats that can cause death in immune suppressed patients. Healthy people might just respond by getting diarrhea and not even know they ran into listeria. Our recent outbreak of listeria in Canada caused 13 deaths from people eating Maple Leaf deli meat from improperly cleaned machines. And I believe 3 or 4 of the deaths were patients who had immune suppression due to drugs that they were on. The newspapers published the info. that patients on immuno-suppressants should routinely avoid deli meats at all times not just during listeria outbreaks. That sort of thing makes me furious i.e. doctors prescribing these drugs and not mentioning things like that which is critical info. to prevent things like sepsis.

Sorry for the long ramble. I’m beginning to feel like the Carrie Nation of immuno-suppressants . Once bit, twice shy.