Reply To: need spome advice on this cidp rollercoaster ride??
Well, there are so many questions from different people, so I am going to try to respond to what I remember. Regarding the pe questions; it is not that the treatment is cummulative as someone asked. Everyone is different regarding how fast they overproduce the autoantibodies, so people need the pe at different intervals. Essentially the process cleans out the autoantibodies and you start fresh. Some people get the ivig right after, the same day, so that the ivig too is starting with a clean slate and essentially can flood the system with good antibodies.
Abouit the prednisone comments, some variants of cidp actually get worse with prednisone. I seem to remember several Miller Fisher people saying they reacted worse with steroids. Just because you reacted badly to prednisone, an immunosuppressant, it does not mean you will react badly to all. They each work differently. There are many, cell cept, rituxan, cytoxan, imuran are mentioned here frequently. MANY have benefited greatly with a cytoxan protocol that has put them in remission. Typically people who have not responded to the typical protocols end up doing the cytoxan protocol. As well several have benefited from the autologus stem cell harvesting which first uses a cytoxan among other suppressants first. I noticed Linda M has responded somewhere on the new site, maybe she will read this and elaborate as she knows the protocol. Basically you have to have had no results with other treatment before they consider this protocol.
About the ivig comments, some people are allergic to ivig, your doc should have done a test to see if you are. If that test came back OK, then what you are experiencing are “reactios” As you mentioned, they can be controlled with benadryl and a slow infussion rate. Another way to alleviate is to switch brands. We use Gammaguard but had used gammunex and had the reactions you speak of. In the begining we also used gammaguard s/d, it is a powder mixture that is mixed with salene, that is what we reacted to the worse and switched to gammunex (better, but still reacted) we now use gammaguard liquid, straight out of the bottle. For the person explaining their ivig treatment, it sounds like you go to a infussion center, you can ask your doc and insurance if you can get home health care. We have our nurse come to the house, every 2 weeks, 6 hours each infussion.
The last person mentions an increased dose and chest tightening, you say you cannot go over 75, just demand that they don’t! Also you mentioned a virus, when we get sick, we feel weaker sooner. Essentially the immune system is turning on to kill off the virus, but because of the autoimmune disease (cidp) it is also creating the extra autoantibodies that don’t stop producing, therefore using up the ivig faster.
Exosurf, if 10 days is what works, that is what you need. Unfortunately need and what doc will give are two different things. To factually prove the need, ask the doc for a nerve conduction/Emg after ten days and then agree to try his plan for a few cycles and then repeat ncv/emg. Then he cannot dispute what you feel. Ideally that is not the right thing to have to do, because each time there is a relapse, by the time you load up again it is hard to say if all of the new damage will repair correctly. Sometimes though for the doc and insurance proof at our expense is necessary.
Regarding ritixan, there have been several on the site who used it and they had to be on it at least 6 months I believe, maybe someone who has used it can verify that. Also with the Pe, I believe you would be washing EVERYTHING out. Pe followed by ivig has worked for some, you just have to tweak how long the pe will work in conjunction with the ivig before you do the pe again, hence cleansing out the ivig as well.