Tell me about plasma exchange
October 30, 2019 at 1:03 pm
I think I’m headed toward plasma exchange. I know what it is, how it’s done, etc. What I’d like to hear are personal experiences. What was it like for you? Did it help? How did you feel during and after the process? How many treatments did you need? Did you go back to IVIG afterward?
October 30, 2019 at 3:46 pm
I have good experience with PE. It helps me in times when my symptoms are getting worse. It stabilises me in terms of strength and sensory symptoms. In times of crysis I got 5 PE treatments within 10 days and It is very effective. Right now (and once before) I get PE once a week to prevent deteryoration. The only side effect I experince is being tierd afterwards. After a short nap – I feel OK.
All the best
October 30, 2019 at 4:58 pm
Thanks for the feedback, Eviator. I recently switched neurologists because I’d developed doubts about my former, aging doctor. He had told me after every EMG that I showed improvement, but I never felt any better. I had a relapse in late summer and still feel terrible despite an increase in my IVIG dose (I take 40 mg a week). My new doctor looked at all my EMGs and said the latest one was more or less the same as the first one I had, before I even started treatment in early 2017. He wants to do a new EMG, then decide what change to make that could help me. PE is one option. I don’t want steroids with all the side effects — and I can’t take steroids orally anyway because I have an ulcer. As you know, not many options exist aside from IVIG.
October 31, 2019 at 3:05 pm
I have had plasma exchange the first year of my CIDP treatments, all 3 times I entered the hospital unable to walk. My progress with each stay was the first exchange I get my legs back the next day then with second exchange I got a big boost of energy and foot drop is gone, walking normally and am able to bend down and tie my shoes. The 3rd exchange is the frosting on the cake! my symptoms are all gone and I am wanting to leave hospital right away. I hope your experience is like mine the hard part is staying in a bed when I feel great but because I entered a fall risk the nurses kept me on a short leash.
November 4, 2019 at 12:42 pm
Harryswope — Thanks for telling me about your experience. Hearing how well it works for you gives me hope. If I have PE, I hope I’ll get it as an outpatient.
Do you receive IVIG at all anymore, or only PE? I haven’t discussed this whole process in depth with my neurologist yet, so I’m unsure about the relationship between the two treatments.
November 5, 2019 at 8:06 am
After you’ve switched to PE, do you ever go back to IVIG? I think I’ve stopped responding to IVIG.
November 5, 2019 at 11:03 am
Actually I started with plasma exchange then my doc started me on Imuran for 2 months but my med supplier disapproved that so I was started on IVIG. I have been doing good except when I go too far between infusions which I found out most I can go is 7 weeks before serious problems start.
November 6, 2019 at 8:45 am
Sandra I have giving my good points about plasma exchange but the more I think about it I should tell you what I hate about it. The procedure to do the ports can be scary, for my first exchange a groin port was put in with local numbing med and I did not like I was able to see doc do his work. The other 2 times I was knocked out and a chest port put in, I had no problems with meds or the port but I did developed a tape allergy that change how port was taped down. I am not sure what kind of port you may get because of your body not responding to IVIG maybe Jim could help with that. Also I could not do this as a out patient procedure because risk of infection but it could be the type of port used on me.
November 6, 2019 at 9:09 am
harryswope — I have a Bard port in my chest that is used for IVIG. (Nurses cannot deal with my veins.) A friend who has myasthenia gravis gets PE using the same kind of port. I don’t know yet if my neurologist will go for PE, but that’s the alternative he talked about. I can’t take oral steroids. IVIG is not improving my nerve function.
February 8, 2020 at 1:30 pm
Sandra – Have you done plasma exchange yet? I’m in your boat in that the IVIg isn’t really helping with nerve function. I finished my 7th treatment yesterday. Still having big trouble trying to go from sit to stand. It’s very frustrating so I am looking into PE as well. Both men I met with CIDP yesterday, while getting my infusion, are getting it 5 days a week each month. I am doing 2 days (40 mg each day) a month.
February 8, 2020 at 2:32 pm
I was on a typical combination of PE with Prednisone. I started treatments with a central venous tunneled catheter. I felt improvement 3 days after my first treatment. I went on to about 50 PE’s all together because IVIg never did anything for me.
A rapid onset of CIDP symptoms and worsening conditions are best treated (in my opinion and based on my experiences with the disease) first with 3-4 days of Plasma Exchange, followed by 8-10 days of IVIg or SCIg. Sometimes an immunosuppressant drug may be needed to help the treatment to work.
It should be noted that PE will cancel out IVIg/SCIg and Rituximab. Ig will cancel the effects of PE and seriously reduce the benefit of Rituxan. So the order of treatments would be important for best results.
February 8, 2020 at 2:42 pm
Thanks for the info and links Jim. I am very frustrated. I also have another component going on, lupus. After chemo for breast cancer, my lupus went into remission. My PCP thinks it is playing a big role in this CIDP (meaning complicating things). I am seeing a neurologist at John Hopkins next month. He was recommended by someone in this forum. I am counting down the days.
You are a wealth of knowledge. Yesterday, I met the wife of one of the men who also has CIDP. Wow, is she a resource! She told me she didn’t like my brand of IVIg being Baxter. She is with the GBS/CIDP Foundation here in Ft. Myers, FL. I plan on becoming more involved.
I hope you are continuing to recover from your most unfortunate accident Jim.
February 8, 2020 at 11:20 pm
Hi Lynn and thank you for your kind words 🙂
I pray whatever treatments you are given help to heal you quickly.
March 5, 2020 at 4:08 pm
Is the effects of Plasma Exchange permanent or do you still have the bad antibodies attacking your nerves and require treatment to keep it at bay? I am on IVIG and starting to not respond to it the way I used to so seeking other treatment options. I don’t want to go the IV Steroid route as the side effects to me are just too much. I am afraid to go on the immune suppression drugs also. So i mentioned PE to my neurologist. He said he usually only does PE on worst case patients and wouldn’t recommend PE for me. I am confused. It seems like a good option to have the bad antibodies taken out and replaced with new plasma.
March 5, 2020 at 6:34 pm
Chirpy, I had immediate (within a couple days) improvement from my first PE. I had close to 80 PE treatments in total and they helped put my CIDP in remission. Then I followed with Rituximab treatments which seem to have cured my CIDP. I’m left with paralysis in my lower legs and am wheelchair-bound. Thanks to the various treatments I’ve had my upper body has come back and so has my upper body strength.
I think Neurologists feel that having a port is too invasive for most folks and they avoid recommending PE for that reason. Had my initial Neuro not opposed PE I believe I would be walking today. But he put me on IVIg and my paralysis worsened while on it. Then I transferred to a center of excellence and immediately got on PE. A bit late for me though.
March 10, 2020 at 3:41 pm
Hello Jim – you said you had 80 PE treatments followed with Rituximab and it seemed to have cured or at least put you into remission. How long have you been symptom free and do you have to remain on the Rituximab indefinitely or was it just a short period? I asked my doctor about Rituximab on my last appointment and he didn’t say much about it. I have heard good things about this treatment and that others have been put into remission after being treated with it. But what are the risks and side effects long-term?
March 10, 2020 at 10:17 pm
Hi Chirpy, my last Rituximab infusion was Sep 2016. I have had no treatments of any kind since. Nor have I had any CIDP related symptoms return since 2014. So it definitely put my CIDP into remission. Many doctors would consider CIDP cured after 3 years without any recurring symptoms. But as we know, not everyone recovers in the same way.
I had no long-term side affects from Rituximab, only some short-term issues as I explained in my thread here: https://forum.gbs-cidp.org/forums/topic/anemia-due-to-cidp
Since Rituximab is “Chimerick” (a mix of human and mice cells) a few people might respond negatively because of the half life of 3 months. But this is rare.
Good luck in whatever treatments you decide to go with.
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