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!

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.