Hello everyone. Despite IVIg for 4 days every month my son is still dipping into symptoms on the third week. Steroids have not helped and he is now reducing these. IVIG is now prescribed every 3 weeks for 3 days to try to prevent the dip into symptoms. Does anyone else need to have IVIg so frequently? His symptoms respond totally to the IVIG - the problem is getting the effects to last longer. Thanks. Brenda
Hi Brenda, I'm real new at this being diagnosed in April this year but I got the 5 treatments in the hospital and have been getting one a week since then now I will be switching to every other week I hope my symptoms continue to get better but it scares me a little to drop down but the doctor would not keep the one a week going even though I was responding real well. If it was up to me I would get the IVIG every week but the doctor is holding me hostage.
I go every 3 weeks for my IVIG. I had been on every 2 weeks for the last year. Every one of us have very similar things going on and respond differently too. I was diagnosed Dec. 2002. Back then I had the initial several day load in the hospital, then once a month two days in a row. I always lost strength before the next month rolled around.
I was officially diagnosed in Jan 2012. Three days of treatment in the hospital, then two days of infusion every three weeks. My symptoms would reappear before my next scheduled appt. so now I am on a every other week schedule. The dosage is influenced by your body weight among other things. I had a port placed on Tues because my veins were wearing out. I was surprised at how much it hurt after surgery. It hasn't been 48 hrs yet and I am starting to gradually feel better, but it would have been nice to prepare myself for the discomfort. My doctor has suggested steroids as well as the infusions but I have not agreed to the steroids as of yet. Symptoms vary so treatment options will vary from patient to patient. Be vigilant about finding what works for you. Good Luck!
Hello I have IVIG every 3 weeks for 5 days and it does not seem to help. I started in Oct 2011 and was getting it every 4 weeks for three days, then upped to every 4 weeks for 5 days, now every three weeks for five days. Systoms have continued, infact I belive they have progressed. I am no longer on steroids, There was a time that it did help, I would get about two weeks of relife then it would start again. Now I dont think it is working at all. Shelley
I go every three weeks for two days. My symptoms always intensify in the last week before the infusion but the neurologist doesn’t want to put them closer as I’m still seeing improvement overall when you look long term, like 3 months time. He’s less concerned with the slide when overall I’m trending better, the medicine is so expensive he doesn’t believe it’s warranted.
Once every 4 weeks - I think that by about week 3 symptoms start getting worse. The short term symptoms appear to be up and down over the cycle. Hopefully the long term trends down - but I have a long way to go before "long term". The best thing is that IVIg has stopped me getting worse.
My infusion schedule has varied from every 3 weeks to every 6 weeks and after 26 months of changing things around I have settled into an every 4 week schedule. Am not a lot better but not worse either.
My nurse tells me she has a CIDP patient on IVIG that needs it every 2 weeks because of the same issues you describe for your son. So, I would just stay in touch with your doctor and be flexible if your son is willing. mike
More than 5 years ago I started with IVIG treatments every 5 weeks but as my CIDP has progressed, I have had to gradually increase the frequency. I have always had the maximum dose that the Dr will allow, namely 2g/ kg of weight.(Does anyone have a higher dose?) Starting next week I will be on a two week cycle. I get a total of 150 g over a two day period, each infusion lasting 3-3 1/2 hours. My problem has been that at the end of the cycle I really went downhill. The long term prognosis is thus not good unless we can find something to stem the disease progression.
Yes I get 2g/kg for five days. My symptoms get worse the week before. However I think all in all the CIDP is getting worse. I am starting to feel issues with my diaphram, trouble breathing and I fall alot more now. The good days are not so good.