Reply To: For those who get regular IVIG infusions, how often do you get them?

April 5, 2017 at 8:32 am

Hi Sandra,
I certainly can understand your frustration and valid concerns. In fact, I believe many on this forum have experienced to some degree or another, similar feelings and worries. This disease can be SO relentless, unforgiving and let’s face it… down right SCARY!!! All I can do is share the knowledge of my own personal experience with IVIG and maybe it can bring some hope to you.

When I was finally diagnosed with CIDP (I say ‘finally’ because it took 6 months to get a diagnoses), I had my first round of IVIG treatment. At the time I could hardly walk (even with a cane) and physical exhaustion was part of my normal every day life. I had severe numbness in my hands/feet and my hands shook at times when I tried to use them. I hated it because I was a ‘normal’ human being just 6-7 months prior.

I was lucky, I saw marked improvement from my initial 3 day IVIG treatment. About 2 weeks after my treatment I was able to walk with my cane and felt as if I was back to ‘normal’. That feeling lasted for about 2 months. Then my CIDP came back with a vengeance. At times I could barely walk at all. Another round of IVIG did nothing for me and I was then put on IV Steroid treatments.

IV Steroid treatments are far less expensive and my insurance company didn’t require prior approval. I stayed on IV Steroids for one year. My life was like a rollercoaster. I would have a few days a month that I would feel at the top of the rollercoaster, like I was close to ‘normal’. And I would have a few days a month where I was at the bottom… couldn’t walk or use my hands well… so exhausted I couldn’t leave the house. Then all the rest of my days would be somewhere in between… either moving up the rollercoaster or moving down. At times it would be so frustrating, having close to the ‘normal’ feeling for a few days and then start going slowly downhill right after (and can’t do anything about it). I eventually, learned to embrace those good days and use my energy to enjoy them instead of cursing why I didn’t have more of them (though I still wish I did!).

After awhile, I really wasn’t benefiting from IV Steroids any more. I moved to Florida and my new neurologist started treating me with a different brand of IVIG. My initial “load dose” was for 4 days and it wasn’t pleasant. After the side effects were gone and about 10 days – 2 weeks after the treatment, I started noticing some marked improvement with my balance and dexterity.

I now have IVIG treatments every 3 weeks (have been on it for 5 months now) and I can graph my gradual improvement on about a 2 degree scale. This can be frustrating in itself as we all would like to see improvement on a 90 degree scale and reach the pinnacle as fast as we can. Unfortunately, for many with CIDP, that’s just not how improvement is obtained. My ‘bad’ days however, are not as ‘bad’… and that in itself is a major positive. I don’t know if I will ever get back to where ‘normal’. I sort of doubt it as I am 56 years old and feel like 86! 🙂 But I am grateful for my good days and even my average ones as I know how awful the ‘bad’ days can be.

All I can suggest to you, is to keep getting the IVIG treatments if the doctor recommends them. It is a positive sign that you have seen some improvement from the last treatment. You hopefully, should continue to see some improvement… but it may not be to the degree or within the timeframe you would like to see.

With regards to the extreme fatigue… my experience is that once I started listening to my body (instead of my head)… meaning ignoring my head saying I could do something, when my body was saying ‘no’ I can’t… the fatigue improved. This meant, I limited my activities and when I felt exhausted, I would take a day (or several days) to rest and let my body heal before continuing activities at a level that wouldn’t produce severe exhaustion. When I pushed myself to exhaustion (by listening to my brain instead of my body), I became very disabled for many days until I rested and allowed my body to heal. Admitting and redefining my limitations, was one of the hardest and best things I ever did.

I am so sorry for this post being so ‘winded’. I am not a writer and certainly find it difficult to convey my thoughts into the proper words. I sincerely wish the best for you, Sandra, and for improvement of your CIDP side-effects. You certainly are not alone in this, and this site is very good for support and information. If I can help in anyway, please let me know.

Best wishes… sincerely,