I get IVIG every 5 weeks now. I was at every 4 weeks for a long time and recently decided to try and push it out to 5 weeks. so far, so good. I have been at the 5 week maintenance dose for about 4 infusions and no problems in between treatment. My hopes are to try to push to 6 weeks in about 6 months to see what happens. I too tried prednisone for my first line of treatment. I was miserable and hated the side effects. I insisted I be taken off the crap and that was when I tried IVIG (6 years ago) and have been on IVIG ever since. I don’t have any symptoms of my CIDP as long as I stay on the IVIG. I go experience very mild symptoms from time-to-time, mostly related to stress. When i get stressed my buzzing feeling in my neck returns, my feet tingle and wobbly knees. But once my stress evens out the symptoms also go away.

Hi Jeff, I also like you was lucky enough to be diagnosed with CIDP within 3 months of the first onset of symptoms. I started IVIG right away and have been on it now for 5 years. I am currently 52. I had some pain in the beginning and over time it has subsided. My neurologist said that it could have been the initial damage that was done to my nerves and it would take some time for the nerves to heal. Now, 5 years out I am able to push my IVIG infusions out to every 5 weeks and I don’t have any major symptoms from my CIDP as long as I get my infusion. Sometimes the tingling in my hands returns or I start to drop small items, calve cramps at night and fatigue in my legs happens close to my infusion date but once I get the infusion I am good to go again. I hope for you that once you start to receive regular IVIG your nerves will start to heal and you will start to feel like your old self. I have not changed anything at all in my life. I am a mom of a teenager, I work long 10 hour days, and I am very active on the weekends. I do notice a little bit more fatigue in my legs and have to take certain things slower such as biking but it could also be just age. So relax a bit and try not to stress too much (stress makes my symptoms worse) and let your body heal. You are lucky to have started treatment so early and probably have only minor damage to your nerves. Good luck and keep us updated as to how you do.

I was put on steroids at first too and had the same problem. I felt like i was going crazy and could not sleep. I insisted I be taken off them and put on IVIG. It has been 5 years since I was diagnosed with CIDP and have been on 35 grams every 4-5 weeks of Gammunux and doing fantastic. I have hardly any symptoms of my CIDP as long as I get my infusion within the 4-5 weeks. I have not had any further damage to my nerves either. So I would talk to your neurologist about putting you on a maintenance dose of IVIG and see it that is better. I was so miserable on the Pred that I decided I would never go back on that stuff again. Good luck to you.

I get my infusions at home too. When I was first diagnosed and started to get IVIG I went to an infusion center. That way they could monitor me closely since it was a new drug. But I have been getting IVIG now for about 5 years and love getting it at home instead of a depressing infusion center. My supplies and Gamunex come via UPS two days before my infusion date. I get everything set up (I call my kitchen my mini hospital on infusion days). The nurse arrives and takes over. It is quicker (no travel and checking in) and cleaner (less chance of getting infection from germs). Also so much nicer relaxing on MY couch in front of MY TV. I will keep getting infusions at home as long as my insurance continues to cover in-home infusions. I think they are the way to go if you do not have problems or reactions. Good luck.

I get a weird motorized general tremor all over sometimes. Especially when I am getting close to needing an infusion. I find it annoying but now that I see others get it I feel better. I was wondering if it was only me or if it was related to my CIDP or what. Now I know that it probably is and I will relax the next time I get it. Rubbing the back of my neck seems to help because I swear the tremor originates from my neck. Feels like my body is standing on a tuning fork. Hands shake too when trying to do fine stuff. I look like an old lady and I am only 49!

I live in Minnesota and also have CIDP. I started with a neurologist at the Noran Neurological Clinic (Minneapolis). My neurologist did a great job at diagnosing my CIDP. My EMG and NCS showed moderate demyelination and my spinal tap was positive for the protein too. But all other tests were normal. She said since all my other tests ruled out other diseases such as MS, she diagnosed me with CIDP because of the results from my EMG, NCS and Spinal Tap. Also my symptoms came on about 10 days after I got the H1N1 vaccine so she also thought maybe the vaccine played a part in the CIDP. But once I was diagnosed I decided to start and see a specialist and looked at the U of M. It was a wait to get in and see the CIDP specialist at the UofM but once I got in he is a great doctor. I currently get IVIG at home every 21 to 28 days as I need it. I did try SubQ infusions at home administered by myself. I didn’t like them. I had to stick myself twice a week and each time I had to use 3 needles and they hurt to stick them into my tummy or thigh. It took almost as long to give the dose SQ as it took to get my IV dose. But I was constantly getting my infusion. So I tried it for a summer and went back to IV. I would revisit SQ again in the future if for some reason my veins went or I could get my dose down so I didn’t need so much of the drug. But for now, I like my nurse taking care of everything. I just have to sit there. The good thing about SQ is I could do it anytime and anywhere. I took it to work one day and stuck myself and wore it during my work day. I also liked to do it late at night after everyone was asleep. I didn’t have to give up a whole day anymore. IVIG has helped me immensely. I can tell that it helps because as I get close to my infusion date I start to get more annoying symptoms and feel worse. Then I get the IVIG and I feel better and symptoms subside for a few weeks.

I also tried pred as my first treatment when I was first diagnosed. I hated it!!! I was so fidgety and grumpy, I could not sleep at all at night. I felt more shaky and dropped things more then before I started the pred. So I also went off and started the IVIG. Now I have had about 12 rounds of IVIG every 21 days and am doing really good. It took a while for my symptoms to stabilize and if i try to push my IVIG out to 4 weeks instead of 3 I start to regress and have symptoms again. So as long as I get my IVIG by 21 days my life has been pretty normal except for minor, annoying symptoms like creepy feeling in legs at night and hands falling asleep sometimes at night too.