I have looked into the STEM Cell treatment. I was in contact with the Hospital in Chicago where the research is being done. I was thinking about applying and got all the necessary forms. But after more research I decided it was not for me at this time. My current neurologist at the U of MN was one of the doctors who worked on the research at the hospital in Chicago. He talked me out of the therapy at this time. He said that it is really grueling and hard on your body in so many ways. They use high doses of chemotherapy drugs to kill off all of your immune system. He said there is not enough evidence that long-term your immune system won’t just go back to attacking. He also said a lot of people have the CIDP cured but end up with a whole host of bad side effects from the STEM cell treatment drugs. So he said he wouldn’t do it unless your disease was so bad and you had no other options. I am hoping with more research they will find ways to make the therapy safer in the future.

I was diagnosed with CIDP in 2011 and have been on IVIG ever since. My neuro started me on Pred rightg away as first line of treatment but it quickly became apparent that I could not handle being on Pred. So we switched to IVIG and I have been getting infusions ever since with good results. I guess I am one of the lucky ones because IVIG does help me. I caught my CIDP pretty quickly after onset as it came on after a flu vaccine so it didn’t take years to diagnose. The quicker you get on treatment to stop the attack on your myelin the better you will be in the long run. Once your system attacks the axon nerves you can’t repair them. So please get a second opinion with a neurologist that is familiar with CIDP. I am lucky, as long as I get 35 grams of Gamunex IV every 5 weeks I don’t have any symptoms of CIDP. Well, except I am a little weaker in the legs then I was when younger but not sure if that is just age related or CIDP. I am 55 years old and doing really good. The bad thing is that IVIG doesn’t put you into remission like some of the immune suppressant drugs can. My neuro thinks I might be in remission so we push out the infusions to 6 weeks and I start to get symptoms in the 6th week so we know I am not in remission. My body needs the Gamunex to keep things in check. I often think of trying immune suppressants but am afraid to change things since I have such good results with IVIG. What if I change things up and start to decline? So I just stay the course. So once you find something that helps you out your body can start to heal and gain strength and hopefully stop feeling numb. I live in MN and go to the University of MN. I see a doctor that specializes in CIDP. He worked hands-on with the Stem Cell Transplant trials going on in Chicago for CIDP.

My neurologist thought I might be in remission or as he said “CIDP sometimes burns itself out in some people”. I have been on IVIG for 6 years now since first diagnosed. Started at every 3 weeks and over time pushed out to every 4 weeks… then every 5 weeks. Stayed at every 5 weeks for long time and did great. So my neurologist wanted to see if I had gone into remission. Said the only way to know is push out IVIG even farther and see how I react. Well to my disappointment as soon as I tried to make every 6 weeks I started to experience symptoms in the 6th week and had to have my nurse come out mid-week and give me my infusion. Went back down to every 4 weeks until everything was under control again and am now back out to every 5 weeks. Plan on staying there! But sure wish I would go into remission. I don’t know if there is anything I can do or take to increase my chances of remission. I hear IVIG usually doesn’t put you into remission. Just maintains your disease. But afraid to change to anything else too.

Have you talked to your neurologist about trying IVIG as your treatment? I first started on Pred when I was first diagnosed and I didn’t see much improvement and I HATED the side effects of Pred… side effects to me were almost worse than my CIDP. So my neurologist started me on IVIG (immunoglobulin IV). I was started on the loading dose recommended for my body weight and then over time slowly tapered down the dosage and I have been able to increase the time in between my infusions. I am lucky as my insurance covers the infusions. I also have not had any side effects at all except a mild headache and feeling a little tired for a day or two after the infusions. I am not in remission but as long as I get my IVIG every 4 to 5 weeks I don’t have any active symptoms of my CIDP. Since I started IVIG pretty much right after I was diagnosed my body didn’t have a lot of time to attach and cause permanent damage to my nerves. I am hoping to go into remission one day but as for now, if I stop the IVIG I get symptoms again. My doctor said some people’s CIDP burns itself out over years and years… I am hoping I am one of those people. I was diagnosed in March of 2011 – due to a H1N1 flu vaccine I received. I have been on IVIG for 7 years now and doing good. I get Gamunux C 10% solution. Everyone reacts differently to IVIG and some people have side effects and for some it doesn’t product any good effects but I really think it is worth a try if your insurance covers the infusions. I get to forget about my CIDP for 4 to 5 weeks and live my life pretty much as i did before the diagnosis. Just a little bit slower as I do have some mild weakness in my muscles. Good luck.

Why are you not on IVIG routinely for your CIDP? I need to get it every 5 weeks or I have symptoms. I tried to push out to 6 weeks and all the sudden I had weakness, tingling, and other symptoms. Went back to every 5 weeks and I function normally. So I just keep getting the IVIG routinely and don’t have any problems.

I have been revisiting the SCT recently. I was diagnosed with CIDP 6 years ago. I am doing really good on IVIG but worried I will get worse or stop responding to the IVIG in the future. So I want to stop this disease in its tracks. But I am also afraid to take such drastic steps since I am stable and doing so well. My neurologist said I should not as it is a very drastic step and there are risks involved. But my take is that why wait until I am sick and have irreversible nerve and axon damage to take drastic steps. Why not try and stop the progression now before I get to that point. I take risks every time i get IVIG… it is a blood product. But my real problem is that I am the bread-winner in the family. I just don’t see how i could take 3 months off my job. Even with short term disability payments they would not cover bills. Plus, I work for a small company of 12 people. I think if i needed to be gone 3 months I would be replaced. My company can’t function for 3 months without someone in my position. So my hands are tied even if I was able to afford or have insurance cover the costs. I don’t see anyway to make it work. So I guess I will have to sit and wait and hope that SCT comes to be a viable treatment in the near future and that it is done at the University of Minnesota so I would not have to be away from home for so long. I could work part-time throughout the procedure via the internet if it was here in MN. I am just so torn at this time.

Sandy, when I was doing SubQ infusions they were successful. It controlled my CIDP and I tolerated the drug being given SubQ. I just decided to go back to IVIG because I was not having vein problems or side effects from the IVIG infusions and they were needed less often. But yes, SubQ is a good alternative if you can’t tolerate the IV infusions. You get smaller amounts of the IG more often so you probably will not have as many side effects. The one downside I did not like is I had to stick 3 to 4 tiny needles into my skin in order for the amount of IG needed to be able to be administered. The tiny needles are so small they hardly hurt (feel like a pin-prick) but I still did not like it. The IG is administered in between the skin and muscle layer (subcutaneous area) so you will have pouches of the liquid in the area you administered the IG until it absorbs. (It takes a while for your body to absorb the liquid). Also I have heard that some people have site reactions where you stick the needle. Redness, swelling and itching. I did not have this. I also heard that you might end up with hard nodules in the areas you stick the needles over a long period of time as scar tissue will form. Best thing I did like is I was in control of when I did the infusions and no nurse involved. I could do it very late at night while watching TV or bring my stuff and do it at work while sitting at my desk. I do advise moving to a 10% solution of IG as I stayed on the 5% solution and I just needed too much IG in one setting making my infusions take too long. Good luck!