IVIG Success Rates
AnonymousJuly 9, 2013 at 11:59 pm
I’m newly diagnosed with CIDP and 5 days ago finished a three day (not in a row) loading dose. The day after the final dose, I seemed to feel a bit stronger and had less pain. Unfortunately, the very next day the pain and weakness seemed to be as bad as ever. Then, yesterday, sensation seemed to have returned to the tips of my little fingers. I could feel ridges and bumps…texture again. I even managed to climb the stairs without pulling myself up by my arms. It was tough, but I did it. “Look ma, no hands!”
I think I was expecting instant and astounding improvement, and I’m not sure if I’m not just trying to convince myself of these little victories or if they really exist. But, I guess everyone is different and I’m trying to gauge my success by reaching out to others. I had convinced myself IVIG was going to completely restore me to my previous condition, now I need to be more realistic. So I am asking you all for your experience. Please share how IVIG worked or didn’t work for you. Share your ups and downs and successes. Sometimes all we need is a little hope to get through the day.
I was working out regularly, gaining strength and losing weight, gradually. About 3 1/2 months ago, I started noticing pain in my hands and chalked it up to excessive dumbbell weight. I eased up a bit, but noticed soreness in the legs and back and shoulders too. I couldn’t sleep on my side because my shoulders hurt too much. There was tingling in my thumb and index finger of my right hand and numbness began to creep up from my calves. I felt like my back was all knotted up and I sought chiropractic and massage therapy. One day, as things were getting worse, the chiropractor asked me to walk on my heels. I couldn’t.
Referred to a neurologist, who was puzzled, after 5 MRIs, blood tests etc. I still had reflexes despite profound weakness in the feet, hands, and legs. I had been doing a lot of research (thank you gbs-cidp.org) and began pushing my doctor toward GBS/CIDP. Finally, after the spinal tap, myelogram, and CT Scans, the doctor retested my reflexes. Eureka! There were none. We settled on a CIDP diagnosis and he asked who else I was seeing to come up with CIDP. It seems we patients can be pretty resourceful when we put our minds to it.
Now here I am, hoping for positive results, afraid I’m not seeing any. Next round scheduled in two weeks.
Holy cow, my fingers have no idea where they are on this keyboard! Please forgive any typos.
July 10, 2013 at 4:28 pm
IvIg helps most people with CIDP, but your initial hopes were not realistic. There is a lot of variation with CIDP and the treatment regimen which works best for one person will not necessarily work best for another. Some patients get regulat maintenance treatments of IvIg, others do not.
In my own case, when I was diagnosed with GBS (later changed to CIDP), I was given a five-day loading dose of IvIg. Improvement was temporary. I started to get weaker in a few days so went back to hospital for another five-day reloading dose. This stabilized me for a short time, but then I continued to weaken and went back to the hospital for a third time. My treatment was switched to plasma exchange. I have had no IvIg since. So while it is the treatment of choice for some, it is not equally effective for all.
July 10, 2013 at 7:37 pm
I hope you improve from IVIG or something else.
I started 19 years ago with 5 days of PE then 3 days of IVIG. Worked great. 3 months later did PE 5 days in 3 weeks back down the hill and this time IVIG for 5 days. Have been on IVIG ever since at various interval. Did several years at 1 per 3 week interval. As I type this I have been exactly 8 weeks since last infusion and I am still symptom free. I wish the same for you.
July 14, 2013 at 2:19 pm
Hello everybody I just had first PE and have a positive response, feel better then I have in the past 4 months. I am newly diagnosed and wondering if anybody had gait problems and did they go away after PE.
July 14, 2013 at 5:37 pm
Harryswope, why don’t you start a new thread on this subject?
AnonymousJuly 16, 2013 at 3:34 pm
10 years ago I was given IVIG for GBS and it worked about 90% recovery. This time CIDP I was treated first with high IV dose of steroids. I improved but 4 days later I was back in the ER. That time I was treated with IVIG, it worked for me much better then the steroids, with less side effects. I’ve been on IVIG treatment every 4 weeks for the past 6 months. I have made great improvement on IVIG, I’m about 60-70% from where I was before. For me it just takes time with the IVIG, but everyone is different.
AnonymousJuly 16, 2013 at 7:34 pm
Thanks tierhog, that helps. I haven’t seen any positive progress since I received my loading dose of IVIG. My neurologist said to give the treatment a chance to work. Knowing that others don’t see immediate results is reassuring. It gives me hope.
I am scheduled for my next treatment in 8 days, then every three weeks. How long before you started seeing improvement?
July 21, 2013 at 9:30 pm
See my posting in the general forum re: Inmran (Azathriprine), a combo of Inmuran/IVIg (2 day IVIg every 30 days – my crash cycles).
AnonymousDecember 30, 2013 at 4:51 am
I am on my second six month session of IVIG and am tracking my symptoms daily. This time I believe I have improved by about 50% although IVIG has been less effective with my big issue with breathing problems. You can see my tracking results on cidplog.com at this link –
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