I have been on IVIG with good results since 2001. All of a sudden it’s not helping me the way it has always helped. My fingers tingle, my legs are weak, & my arms are weak as well. My Dr has suggested I do Plasma Paresis. Has anyone done it for CIDP treatment?
Signed,
Desperate for help 
Hello
I have been doing Pharesis for 11 months, I had great results from the beginning but it is tapering off. It was the first treatment option for me. I also have had zero side effects, may be a little tired but that is about it. Luckily I have a friend that lives 5 miles from where it is offered...the toughest part is scheduling. I have thought about switching to IViG for a while to see if going back and forth will extend treatment intervals.
Al
Thanks Al. How long did it take for u to see results with plasma paresis? I did my first one yesterday & feel worse today
THat is normal, took 3 the first time to start climb up
Al
to clarify, my first treatment was a series of 5, after the first one felt worse, then started feeling better, at end of 5 was a lot better...mine were every other day
Thanks guys. Having your support means a lot to me. No one around me understands how I feel. But you do. My next treatment is tomorrow. Wish me luck!
Braveman… How long did the treatment work until you started to feel weak again? They are doing my last treatment tomorrow then they are giving me 1 IVIG treatment to lock it all in. I have gotten such good results from the plasma pharesis that I am nervous.
Hello
after my first series, results were good for 8 weeks...less with each treatment.
Al
Thanks Al! You have really helped me get threw this treatment.
Hi Al,
I have the Exchange every three weeks at my local hospital. At times I cannot wait to have it, other times it appears that there is no need but I still go through with it even though it is invasive and knowing the potential consequences of not having it. I get physically drained by the end of it, picking up a day to three afterwards. I was on IVIG for a number of years but got used to it and changed when it did nothing for me anymore. I've had the Exchange now for six years and find it more effective as a treatment. Hope this information is of help. Best Wishes, Bruce.
Hi Heather,
I hope all is well with your treatments and I hope your seeing improvements. I had Plasma Pharesis as a second option to IVIG about 13 years ago, I was hospitalized as a result of the severe oncoming of CIDP. At my lowest point there in the hospital I remember being bedridden and not being able to move the muscle's in my eyebrows, scary! After IVIG and Pharesis and therapy everyday, I went from the bed to a wheelchair, to a walker, and now I walk with the support of leg/foot braces. I felt like it definitely worked for me and I'm thankful my parents were there for me and ok'd the treatment as I was just 11.
Stay Strong
Wow Johnny… It is scary when you loose your muscle movement. I had great results from the plasma pharesis. I am stronger now than I have been in months! Do you still do the plasma pharesis or where you able to go back to the IVIG treatments? They also found out I have Graves Disease/Hyperthyroidism when I was in the hospital. I think that is why the IVIG treatments stopped working. But I am hoping I can go back to the IVIG treatment. It’s easier for me to fit them into my schedule… I am a mother if 2 kids.
Thank you Johnny & u stay string too!
P.S. I am going to see a CIDP specialist at Cornell in the middle of September. I am hoping to find a way to go into remission.
Since my time in the hospital I hadn't had any treatments other then physical therapy and about 4 years ago I hit a plateau in my recovery so they stopped the physical therapy. For the last year I've felt a slow decrease in my strength so 2 weeks ago I had 7 days of IVIG, I see some improvements, but they say it could take from a week to 3 months before signs of improvements show.
For me, it feels like if I'm not constantly on top of my ongoing lifetime recovery it starts to show and my strength weakens. If I slack off on exercises (and everyone does once in awhile) it hits me harder then I would a person without this. I can only look at it in a good way, like a personal coach that gets me back at it!
Good luck with your trip in September!
Stay Strong
Hey Johnny. Since I have been on Here I relapsed again. this time went into paralysis for a couple of days. It was scary! I have also gone to NY & saw the specialist. He basically told me that my Drs should have had me on a regular IVIG treatments instead of them giving it to me only if I was relapsing. He also thinks my thyroid is throwing my disease out of wack. I was suppose to start loading doses of the IVIG when I got back but I started another relapse before I got the first one. So I am back in the hospital doing the plasma pharesis & will do my loading doses of the IVIG when I am back up to par. Thanks for listening to my rambling.
Heather
I have also done plasma exchange. It in July/August 2011. I don't recall any bad side effects. It did help me regain some strength in my legs. I was able to wear braces on my legs, so I could stand for a longer time. The most difficult part (other than the surgery, and keeping the port clean) was getting the area cleaned by the nurse. She scrubbed my skin off....
Fortunately it healed. Stay strong, Heather. I have been in remission for nearly a year.
This is my 3rd month doing plasma pharesis and it only lasts for about 2 weeks. Did they do anything else after the plasma pharesis? I can’t spend 2 weeks out of every month in the hospital. I have a family & a job I need to get back to. My dr refuses to do it on an out patient basis. Says the risk was to high for infection if I leave the hospital with the catheter in me