Reply To: CIDP – HSCT Clinical Trial, Dr. Burt Chicago
I was thinking about applying for the SCT program. I emailed them and they sent me the patient intake package. I have had CIDP for 6 years now. I tried Pred and it made me miserable. I have been on IVIG now every 4-5 weeks and i do really good on IVIG but i can’t stop it. If i stop my symptoms come right back so I am still have active CIDP. The criteria is that you have tried two drugs and failed to stop progression. So I think I fall under that category. I discussed the program with my current neurologist and he said he thinks that I should not go through with it at this time. He knows a lot about the program because he is one of the doctors that works on the program at Northwestern. Anyway, he said that it is such a drastic approach to treat CIDP that he thinks since I am doing ok on IVIG that I should stay my course. He said that he evaluates patients and thinks it should be used only for patients that are at the end of trying everything and are very sick. I disagree a bit. I think maybe I should do it now while I am still healthy so that I don’t progress to be that sick. Why wait until i have nerve and axon damage and then try and put my CIDP into remission. By then I will be miserable. I would rather go through a horrible, grueling procedure for a few weeks and then be done with infusions and meds. Maybe my life would go back to normal and I would not progress to being wheelchair bound or having to use a cane. But he still thinks I should not do it at this point. Too many risks involved. Has anyone else had the SCT and were not extremely sick but had active CIDP? Was it worth it? My neurologist said that some of the people go through the treatment and then regress and have CIDP again. Most people that post blogs are successful and did not regress but there are patients that go through it and regress. I did a lot of reading on SCT and I see some risks but more benefits than risk. I have shelved this for now but it is still in the back of my mind. I would like to explore it more. Any comments would help.