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Plasmapheresis - anyone had success?

Posted by Rachel, Volunteer Mentor @rwinney, Feb 14, 2020

Hello -

I haven't heard too much about plasmapheris and am curious if anyone out there in the neuropathy world has successfully tried it?

I had the same same thoughts when receiving lidocaine infusions and truth be known, they didn't work for me and that's probably why there was not much said about them as a successful treatment on this forum.

Thank you for any shared input.
Be well -
Rachel

Interested in more discussions like this? Go to the Neuropathy Support Group.

Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Feb 15, 2020

Hello @rwinney. There is some information out there about plasmapheresis (also referred to as plasma exchange), but the research I am finding has to do with neuropathy in relation to specific causes. For example, here is a research study from the NIH, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1027944/. They use plasma exchange for patients dealing with a plasma cell dyscrasia. Here is another article where multiple types of neuropathy are discussed, https://jamanetwork.com/journals/jamaneurology/fullarticle/791917. It looks as though there are differing circumstances and causes that lead patients to this type of treatment. Has this been discussed as an option for you?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 15, 2020

Hi Rachel @rwinney, There have been some posts on Connect where plasmapheresis has been mentioned. Here is a link to the different posts in multiple discussions - https://connect.mayoclinic.org/search/?search=Plasmapheresis. Are you thinking about getting a plasmapheresis treatment?

I found a description of the treatment on a Mayo Clinic - Myasthenia gravis Diagnosis & Treatment page here:
-- https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/diagnosis-treatment/drc-20352040

"Plasmapheresis (plaz-muh-fuh-REE-sis). This procedure uses a filtering process similar to dialysis. Your blood is routed through a machine that removes the antibodies that block transmission of signals from your nerve endings to your muscles' receptor sites. However, the good effects usually last only a few weeks, and repeated procedures can lead to difficulty accessing veins for the treatment.

Risks associated with plasmapheresis include a drop in blood pressure, bleeding, heart rhythm problems or muscle cramps. Some people develop an allergic reaction to the solutions used to replace the plasma."

There is also a YouTube video from Apr 6, 2010 by Brian Weinshenker, M.D., a Mayo Clinic neurologist, describes the process of plasma exchange in treatment .
https://www.youtube.com/watch?v=i9a9FAaXbHo

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Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 15, 2020
In reply to @JustinMcClanahan "Hello @rwinney. There is some information out there about plasmapheresis (also referred to as plasma exchange),..." + (show)
@JustinMcClanahan

Hello @rwinney. There is some information out there about plasmapheresis (also referred to as plasma exchange), but the research I am finding has to do with neuropathy in relation to specific causes. For example, here is a research study from the NIH, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1027944/. They use plasma exchange for patients dealing with a plasma cell dyscrasia. Here is another article where multiple types of neuropathy are discussed, https://jamanetwork.com/journals/jamaneurology/fullarticle/791917. It looks as though there are differing circumstances and causes that lead patients to this type of treatment. Has this been discussed as an option for you?

Jump to this post

Hi Justin
Thank you for your research. It has loosely been discussed and sort of thrown out there with out getting too specific to my case. My recent request to Neuro, of this possible treatment, was evaded by recommending a EMG/Nerve Conduction study re-do. I am having the testing in April and will go from there. In the mean time...doing my due diligence. I will read over your links. Thanks again! - Rachel

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Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 15, 2020
In reply to @johnbishop "Hi Rachel @rwinney, There have been some posts on Connect where plasmapheresis has been mentioned. Here..." + (show)
@johnbishop

Hi Rachel @rwinney, There have been some posts on Connect where plasmapheresis has been mentioned. Here is a link to the different posts in multiple discussions - https://connect.mayoclinic.org/search/?search=Plasmapheresis. Are you thinking about getting a plasmapheresis treatment?

I found a description of the treatment on a Mayo Clinic - Myasthenia gravis Diagnosis & Treatment page here:
-- https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/diagnosis-treatment/drc-20352040

"Plasmapheresis (plaz-muh-fuh-REE-sis). This procedure uses a filtering process similar to dialysis. Your blood is routed through a machine that removes the antibodies that block transmission of signals from your nerve endings to your muscles' receptor sites. However, the good effects usually last only a few weeks, and repeated procedures can lead to difficulty accessing veins for the treatment.

Risks associated with plasmapheresis include a drop in blood pressure, bleeding, heart rhythm problems or muscle cramps. Some people develop an allergic reaction to the solutions used to replace the plasma."

There is also a YouTube video from Apr 6, 2010 by Brian Weinshenker, M.D., a Mayo Clinic neurologist, describes the process of plasma exchange in treatment .
https://www.youtube.com/watch?v=i9a9FAaXbHo

Jump to this post

Hello John
Will read and watch the information you've included. Thanks so much for helping out.
Hope you have a happy day. 😊
Rachel

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Feb 15, 2020
In reply to @rwinney "Hello John Will read and watch the information you've included. Thanks so much for helping out...." + (show)
@rwinney

Hello John
Will read and watch the information you've included. Thanks so much for helping out.
Hope you have a happy day. 😊
Rachel

Jump to this post

Thanks Rachel, I hope you have a pain free day and will let us know what you find out. You are a great help to many of us!

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lorirenee1 | @lorirenee1 | Feb 15, 2020

@rwinney Hi Rachel, I asked my pain doc about plasmapheresis, and he said that there is no proof that it works. Told me that athletes tend to do it. That is all I know! A wellness clinic by my house was offering it for neuropathy. Try to make some money! Lori R.

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 15, 2020
In reply to @lorirenee1 "@rwinney Hi Rachel, I asked my pain doc about plasmapheresis, and he said that there is..." + (show)
@lorirenee1

@rwinney Hi Rachel, I asked my pain doc about plasmapheresis, and he said that there is no proof that it works. Told me that athletes tend to do it. That is all I know! A wellness clinic by my house was offering it for neuropathy. Try to make some money! Lori R.

Jump to this post

Ahhh.... yes I can see that. Thanks for chiming in. I tend to lean towards it being a crap shoot as well. Wishing you a pleasant, peaceful day. 🌹
Rachel

REPLY
helennicola | @helennicola | Feb 15, 2020
In reply to @rwinney "Hello John Will read and watch the information you've included. Thanks so much for helping out...." + (show)
@rwinney

Hello John
Will read and watch the information you've included. Thanks so much for helping out.
Hope you have a happy day. 😊
Rachel

Jump to this post

Hi @rwinney, I was wondering (can’t remember) if you’ve tried low dose naltrexone or Kratom for your pain? Also, can someone list the supplements included in the new “Protocol”? I get frustrated dealing with Facebook since I am not always able to log in.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Feb 15, 2020
In reply to @helennicola "Hi @rwinney, I was wondering (can’t remember) if you’ve tried low dose naltrexone or Kratom for..." + (show)
@helennicola

Hi @rwinney, I was wondering (can’t remember) if you’ve tried low dose naltrexone or Kratom for your pain? Also, can someone list the supplements included in the new “Protocol”? I get frustrated dealing with Facebook since I am not always able to log in.

Jump to this post

@helennicola, the new Protocol 525 will basically be the same supplements as we now take only in fewer pills with a few enhancements. Only slight changes...the main change is fewer pills to take and not having to order individually. 525 comes in one box. You can see a list of the products on the websites order page where there are links to the Amazon page where we order from.
http://solutions2pnpd.com/products/. It is tough if you aren't able to use Facebook but I think they may be looking into enhancing the website somehow. Have you joined the group on Facebook? I imagine you would have trouble trying to see it if you are not a member since it is a closed group. If you want to join, here is the link - https://www.facebook.com/groups/SPNPD/

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 15, 2020
In reply to @helennicola "Hi @rwinney, I was wondering (can’t remember) if you’ve tried low dose naltrexone or Kratom for..." + (show)
@helennicola

Hi @rwinney, I was wondering (can’t remember) if you’ve tried low dose naltrexone or Kratom for your pain? Also, can someone list the supplements included in the new “Protocol”? I get frustrated dealing with Facebook since I am not always able to log in.

Jump to this post

Hi Helen

I have LDN but have yet to try it because Im unable to have required 6 hr stretch without hydro at night. Not a fan of Kratom personally. Have a nice day.

Rachel

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