Cookie, I started out on IVIG and could not handle it due to severe headaches. However, it worked but then came back after a few months. Only had two rounds of treatments. Due to the headaches, I then went in for plasma exchange, but at the same time they started me on Imuran and prednisone. PE worked great for about six weeks then symptoms returned. Went back in and had another round of PE, all the while still on the meds. Since November of last year I have not had to have any further treatments as I was told that it appears the meds are now taking it's full effect. So for now, that is all I am doing and I feel really good most of the time. We will see after I have been off of the prednisone for a while if it comes back. I am to be completely off by the first of July. Only Imuran from that point on. Good luck with everything and I will keep you posted and hope that you will as well. thanks
Cookie said:
Great news John! Can you tell us how long you had the symptoms before you started on the prednisone? Was that the first drug they put you on? Great for you but it just seems that so many others have such a long trial of meds before getting any relief, most often the IVIG for so long....were you ever on IVIG?
I too had just one bad episode of "aseptic meningitis" with the first loading round of IVIG and thereafter they added the solumedrol and an additional 500cc of normal saline IV fluid to my doses to prevent future headaches. I had always been a migraine sufferer (and still am) so the feeling was that the solumedrol would prevent the CNS irritation from the IVIG. It's been working OK since then with a couple of episodes of headaches post infusion, but none that get too out of control. I use an extra benadryl and tylenol when I feel one coming on in the hours after the infusion is over and it seems to help. I've ever been on Imuran at all. This will be my 8th month of having the IVIG and as I probably said in a prior post, although I have lots more energy, the original symptoms that led to the CIDP diagnosis have not been alleviated. I have good days and then BAM, very bad days of muscle spasms, weakness, etc. I used to time them by it being the week prior to my monthly infusions, so my doc made the infusions every 3 weeks, now I still get these days, so I don't believe when or how frequent I get the infusions matters. I just may be one of the few that IVIG does not seem to work that well on. I just finished weaning off the trial of oral prednisone. It made me feel worse right away which I'm sure was not good, plus I'm left with a wicked skin rash on all my extremities that I've never had before in my life. One fun thing after another!
So yes, best wishes to you and I hope you continue to get back to your prior state of health--or at least close to it!
Jon said:
Cookie, I started out on IVIG and could not handle it due to severe headaches. However, it worked but then came back after a few months. Only had two rounds of treatments. Due to the headaches, I then went in for plasma exchange, but at the same time they started me on Imuran and prednisone. PE worked great for about six weeks then symptoms returned. Went back in and had another round of PE, all the while still on the meds. Since November of last year I have not had to have any further treatments as I was told that it appears the meds are now taking it's full effect. So for now, that is all I am doing and I feel really good most of the time. We will see after I have been off of the prednisone for a while if it comes back. I am to be completely off by the first of July. Only Imuran from that point on. Good luck with everything and I will keep you posted and hope that you will as well. thanks
Cookie said:
Great news John! Can you tell us how long you had the symptoms before you started on the prednisone? Was that the first drug they put you on? Great for you but it just seems that so many others have such a long trial of meds before getting any relief, most often the IVIG for so long....were you ever on IVIG?
I know I am late to this discussion, but it is really crazy how when you are having the symptoms you want to reach out, but when your not, you don't. Human nature I guess. Nonetheless, I am now responding and am in remission with the disease. I went through hell for about 3 years including about 5 stints in the hospital for IVIG in the beginning until I had an allergic reaction, then plasmapheresis the last 3 times. I had my last treatment in January of this year and have been in remission ever since. I was on Imuran and prednisone for a while and I seemed to be having relapses about every 3 to 6 months. Then in March my doctor changed me to Cellcept Not sure if this is the reason I have been in remission now for 9 months, but I am hopeful that is the reason. So if you have been on Imuran (Azathioprine) and it is not working, maybe ask for Cellcept. There are options, but sometimes it is just trial and error. And make sure you are with a doctor who is a specialist for CIDP or at least this is one of their primary areas of expertise.
I was put on Prednisone before IVIG infusions. It worked at a high dose of 60mg daily. But, I gained 20 pounds immediately and can't get rid of the weight. Once the neurologist lowered the dosage, the prednisone didn't help at all. It sure sounds like prednisone has different effects for different people.