Guys I have been taking prednisone for about a year now and cellcept & prednisone for 4 months now. Back in Feb I had one IVIG treatment over 2 days and got Aseptic Meningitis, it took about 4 weeks for me to get back to normal but around the 4th week all my symptoms went away for about a week and then came back slowly I was on no medication during that 4 weeks.
I have gained about 30 pounds from 240 to 267 and I have bad acne now. I guess the prednisone is cuasing this and I really hate it. I am fighting with my doctor to try IVIG again and see if we can space it out so I don’t get sick. He really does not want to try it again since I go so sick last time.
Can anyone tell me what has been your experience with IVIG over 2 or more years and also any one that has been on prednisone 2 or more years? What are the side effects and have you found any way to lessen them or counter them all together. I am worried aboutprednisone long term since I know so many people that are older that have joint and bone problems from taking prednisone for so long.
I took prednisone for about two or three weeks when first diagnosed. I could not get off the stuff quick enough. I could not sleep, I felt jittery and irritated all the time, weight gain, and more. I did IVIG and got the headache the first time too. So we slowed way down. My first time they ran the IVIG in pretty much at full speed - up to 300. Since the first headache my doctor put in my chart that I can only get IVIG up to 100 and i have to start at very low and then ramp it up every 15 minutes until I get to the 100 flow. Then no higher. It takes my infusion longer because it goes in so slow but I never get any side effects from the IVIG anymore. I feel great after my infusions, a little bit tired but that is all. I can still go shopping or anything after my infusions. I am not pushing my infusions out from every 21 days to every 28 days and doing good so far. I have also started to have home infusions vs. going to a center since I don't get any side effects. I like having them at home because the IV bag can be put in a little backpack and I can walk around during the 4 hour infusion and do things. I tried Sub Q infusions for a month. I had to administer the Gamulux to myself under the skin. You can only put 25 mls under the skin in one place so I had to have three needles each time to get the full 75 mls. You also give the infusion twice weekly instead of once a month. So you are getting much less of the IVIG at a single time leading to much lower incidents of side effects. But i found it burdensome to have to do it twice a week. I have switched back to IV. You could look into SQ because the amount of drug at one time is very low so you probably would not get the headache. Or try the IVIG again with premeds and running it very slowly... Also you need to be very hydrated when getting IVIG. Make sure to drink a lot of water the day before, the day of and the day after you get IVIG. It REALLY makes a difference with side effects. I did worry about long-term effects of the prednisone and cellcept. My doctor did discuss cellcept with me but told me about the long-term potential for problems so i opted for IVIG instead. Good luck with treatment with whatever you end up using.
I was dxed in Dec '10, started pred 20mg right away. Then IVIg in Jan '11. Started to wean off pred about March '11 got off by May '11 and symptoms got so bad again by July '11 I was back on pred 15mg. Decided to go for the Stem Cell Transplant and weaned off pred to 10mg before going to Chicago for evaluation in Dec. '11. Didn't take IVIg before going as well. Was accepted for SCT and kept on both IVIg and pred until SCT in April '12. Got a rash from one of the meds during transplant and am still on 5mg of pred to help w/ rash (but slowly decreasing again). Haven't had another IVIg and am feeling great! No more twitches, pokes, shakes, tingles or other symptoms of CIDP!!
If you are going to try IVIg again, go SLOW with infusion, drink LOTS of water before, during and after infusion. Take Tylenol and Benedryl 1/2 hour before infusion also (usual before for lots of infusion centers to give this). But, look for info on the SCT for your future reference if you don't want to do IVIg, pred, plasmapharesis, etc for the long term!! Go to clinicaltrials.gov and search for trials by typing in "CIDP and Chicago". I also found lots of info on facebook page titled "CIDP and Stem Cell Transplant", look under "SCT Documents" you will find mega good info there. Best to you!
I was almost completely paralysed by the time I got diagnosed with CIDP and my neuro treated me very aggressively-80mg prednisone a day, Cellcept and lots of IVIG. 5 a month, 4 a month, then 2 and finally just one. I haven't had an IVIG treatment in nearly a year (!).
I was fortuneate to not have any IVIG side effects. The steroids though, wow. Almost immediately I developed steroid induced diabetes. Then there was the steroid induced psychosis. And the weight gain
Before weaning me off the IVIG, we slowly weaned me off the prednisone. It was nice to be able to sleep again.
Is your dr. a neurologist? How about a neurologist that specializes in CIDP? It took me several tries before I found a neurologist who specialized in our illness and it made all the difference. Today i am very health, symptom free and continuing to get stronger. I don't think I would have gotten better if I had stayed with the other doctors.
I was dxed in Dec '10, started pred 20mg right away. Then IVIg in Jan '11. Started to wean off pred about March '11 got off by May '11 and symptoms got so bad again by July '11 I was back on pred 15mg. Decided to go for the Stem Cell Transplant and weaned off pred to 10mg before going to Chicago for evaluation in Dec. '11. Didn't take IVIg before going as well. Was accepted for SCT and kept on both IVIg and pred until SCT in April '12. Got a rash from one of the meds during transplant and am still on 5mg of pred to help w/ rash (but slowly decreasing again). Haven't had another IVIg and am feeling great! No more twitches, pokes, shakes, tingles or other symptoms of CIDP!!
If you are going to try IVIg again, go SLOW with infusion, drink LOTS of water before, during and after infusion. Take Tylenol and Benedryl 1/2 hour before infusion also (usual before for lots of infusion centers to give this). But, look for info on the SCT for your future reference if you don't want to do IVIg, pred, plasmapharesis, etc for the long term!! Go to clinicaltrials.gov and search for trials by typing in "CIDP and Chicago". I also found lots of info on facebook page titled "CIDP and Stem Cell Transplant", look under "SCT Documents" you will find mega good info there. Best to you!
I had my first 2 IVIG infusions beginning in February. I had a horrible headache "meningitis type" for about 10 days and lost a week of work when my neuro put me on Prednisone for a taper of about 5 days to relieve the headache. The prednisone helped. My next infusion, they decided to pre-dose me with Solumedrol which caused my blood sugar to go wacky and I missed another week of work while I felt as weak and whacked out as ever. So the doc has decided that I have bad reactions to IVIG and has put me on Cellcept and Prednisone for about 2 months now. I've gained about 20 lbs in a few months and last week I nearly passed out at work because my blood sugar skyrocketed!! What I don't understand is why the neuro keeps giving me steroids when my body clearly doesn't do well and why he doesn't put me back on the IVIG and try a different brand that might not cause me to have the awful side effects. I have gotten stronger and have regained reflexes in everything but my ankles and feet. I'm frustrated because I can''t keep missing work from all these side effects of the meds.