Hello;
I had to stop IVIg on Dec 7 of 2016 (treatment was Sep 2015 – Dec 2016). I’ve done fairly well without the use of immune suppressants and pain meds. The only thing that I noticed was that when I have “flare-ups” (not relapses); The lingering symptoms of the damage of CIDP are more noticeable and I will require more rest because I don’t have the extra help from IVIg anymore. I’ve learned not to “panic” and just calmly ride the mini storms that come and go like the weather. Fortunately, I do not work anymore because of the damage the disease has done (46 years old) so taking the time to rest and knowing my limits helps with recovery.
I hope that you have a smooth transition from IVIg and you do great. Keeping a journal during this time could help you and your DRs keep track of how its going.
Warmest regards,
Amarie

Hello there Jeff,
May name is Amarie and I am also right here in Houston. Symptoms began in June 2016 and by the end of July, I was in a wheelchair. I was diagnosed in Aug of 2015. I was on IVIG for 1 year and 3 months at 2 wks, 3 wks and 4 wk intervals. The infusions began in Sep 2015 and it was not until about January of 2015 that I truly felt a BIG difference. It was very slow and steady for me. I had to gradually change my activity level to match the progress of the healing. It’s easy to push the muscles too far. I would often feel as though I was relapsing but the EMG showed no further damage. Through the treatment I still had to struggle with pain, muscle fasciculations, numbness, tingling/stinging, etc. and even days to weeks of increased pain in my legs. It would come and go. I did regain strength and balance though. I was advised by the neuromuscular neurologist to “not panic” and that some of these residual symptoms will be transient. He wanted me to especially pay attention to my strength level. Sometimes it can be difficult because the pain, tightness and heaviness in my legs particularly can make me feel weaker but so far every time these symptoms have increased (whatever the duration), they have also decreased and I’ve felt better. In December of 2016 I received my last infusion. March 7th, will be 3 months off of IVIG. Needless to say, I’m concerned. I don’t want to relapse. I’m having to remain as calm as I can and coast through some of the increase in symptoms. I can still walk, drive and feel okay but I do feel as though I’ve lost some strength overall but I’m no longer getting the extra antibodies, etc from the IVIG so that is to be expected. I did have to stop working (at the age of 45) but I could no longer handle the all too frequent calling into work to tell them that I couldn’t make it in. I did manage to make it back to work in Oct 2015 and struggled with working til’ recently. I am just hoping that with much needed time away and more healing that I’ll not have as much pain or residual symptoms. I know every case and individual is different and we all experience CIDP in different ways but one thing is key and that is to communicate with your DR and be aware of your body. Eat and live as well as you can. It is wonderful that your wife is with you. It feels lonely when we are diagnosed with this and it is only rare when it is not us. There is a CIDP support group meeting in April (Houston Chapter of GBS|CIDP Foundation International , you can find them online and see if there is are tickets remaining). Take care Jeff,
Amarie

I was diagnosed Aug 2015 with CIDP. My major complaints have always been about the pain in my low back, joints and sudden bouts with maintaining stamina and when I get sleepy/fatigued; it’s a big deal. I spoke with my neurologist about these annoying issues being a long term struggle. He explained to me that it is very common and that I may never get rid of some of these symptoms and that rest and more rest will always be a concern. He did stress that if a continual loss of strength and balance began again then he would have to adjust the treatment again. Currently, I am on every 2 wk IVIG but will soon change to ever 3 wk for awhile. Today, June 2nd, marks the 1 year anniversary of the first onset of symptoms prior to my diagnosis in Aug 2015 (I was reliant on walker then wheel chair). I only occasionally have to use a cane for really long distant walking or when I’m have a temporary onset of weakness. The neurologist has reminded me time and time again that my recovery will be longer than what I expect it to be. I do hope you continue to heal and improve. Warmest wishes to you.