If it is antibody mediated, why the docs not recommending immunosuppressive drugs like tacrolimus, cyclosporin, or cellcept?
Also, I would like to know if anybody had PLASMAPHERESIS done to remove the offending antibody. Thank you.
If it is antibody mediated, why the docs not recommending immunosuppressive drugs like tacrolimus, cyclosporin, or cellcept?
Also, I would like to know if anybody had PLASMAPHERESIS done to remove the offending antibody. Thank you.
@govisri, I'm thinking the answer to your first question is a little complicated and has some dependencies. Even though this article is specifically about Lupus, I think this is the basic reason but then I'm not a doctor and have no medical training.
Based on my experience with severe axonal sensorimotor polyneuropathy for 10 years, my neuropathy pain went from 100% throughout my whole body down to 2%.
From my experiences and readings Neuropathy is not curable, but in some cases treatable. Once nerves are damaged, it is difficult to cure (fix). As for treatment, "whatever works for you" is the expression. And GOOD LUCK!!! And please tell us what works.
I have been taking IVIG infusions, with a break of 5 months due to another unrelated medical issue, since February, 2022. It is for one week a month, 3 hours, 5 business days. My infusions are give at a branch of Rhode Island Hospital, where Brown Neurology and my neurologist are. The infusions are based on your weight, so let them know if you cannot get up on their scale. I weigh myself at home.
Once ready for the infusion, I first get Tylenol and a Benadryl, Benadryl either as an IV or orally. The infusions are given in private cubicles there, so I can read or watch TV, or sleep.
I have not had headaches, S some report, and have suffered no other side effects.
My neurologist seems to be of the mind that if it seems to be helping, she will continue to order it.
She is also at Brown Medical School as a professor, so the research part of IVIG is interesting to her.
I am also on a Zoom meeting once a month with resources from The Foundation for Peripheral Neuropathy. I can let you know when we have our next Zoom meeting. There is also the Western Neuropathy Association which has Zoom support groups. Cornell Weill Medical Center in New York has a research center for neuropathy.
I hope this helps.
I have been taking IVIG infusions, with a break of 5 months due to another unrelated medical issue, since February, 2022. It is for one week a month, 3 hours, 5 business days. My infusions are give at a branch of Rhode Island Hospital, where Brown Neurology and my neurologist are. The infusions are based on your weight, so let them know if you cannot get up on their scale. I weigh myself at home.
Once ready for the infusion, I first get Tylenol and a Benadryl, Benadryl either as an IV or orally. The infusions are given in private cubicles there, so I can read or watch TV, or sleep.
I have not had headaches, S some report, and have suffered no other side effects.
My neurologist seems to be of the mind that if it seems to be helping, she will continue to order it.
She is also at Brown Medical School as a professor, so the research part of IVIG is interesting to her.
I am also on a Zoom meeting once a month with resources from The Foundation for Peripheral Neuropathy. I can let you know when we have our next Zoom meeting. There is also the Western Neuropathy Association which has Zoom support groups. Cornell Weill Medical Center in New York has a research center for neuropathy.
I hope this helps.
Thanks so much for sharing this information. Honestly, just knowing that there are others out there who have doctors who’ve heard of it and even some people who have benefited from it makes me feel better. When I first brought the idea to my doctors, I felt like they thought I was crazy. And even now the attitude hasn’t been all that supportive.
I do think the neurologist I connected with would be willing to order it if/when I’m ready. One thing giving me pause were the potential side effects, so I feel better knowing a little of what you did to manage. Thanks also for the resources!
Been struggling with PN for years and my neurologist has doe nothing to help find the causes other than to give me Gabipenten and Pregablin which didn’t work. Tried Yale and earliest appointment was six months away. My PN is
up past my ankles and in my hands, painful and scary. Noticed many folks in this group have had significant diagnosis of their PN than I have been able to get. How do I find the folks that will put in the effort to discover and give me the care this needs on a timely basis? I’m extremely uncomfortable and at my wits end not knowing where to turn?
Connect
Connect
Like
Helpful
Hug
Great questions. I'll be interested in reading responses.
-
Like -
Helpful -
Hug
1 ReactionI too have PN due to my lupus, mostly. Pat
@govisri, I'm thinking the answer to your first question is a little complicated and has some dependencies. Even though this article is specifically about Lupus, I think this is the basic reason but then I'm not a doctor and have no medical training.
"Because immunosuppressive drugs put down the immune system, people taking them are at an increased risk for infection."
--- Treating Lupus with Immunosuppressive Medications: https://www.hopkinslupus.org/lupus-treatment/lupus-medications/immunosuppressive-medications/.
There is another discussion on Plasmapheresis that you might want to read through here:
--- Plasmapheresis - anyone had success?: https://connect.mayoclinic.org/discussion/plasmapherisis-anyone-had-success/
Based on my experience with severe axonal sensorimotor polyneuropathy for 10 years, my neuropathy pain went from 100% throughout my whole body down to 2%.
You can read about my story using this Mayo link
https://connect.mayoclinic.org/comment/645606/Please let me know what you all think
-
Like -
Helpful -
Hug
1 ReactionFrom my experiences and readings Neuropathy is not curable, but in some cases treatable. Once nerves are damaged, it is difficult to cure (fix). As for treatment, "whatever works for you" is the expression. And GOOD LUCK!!! And please tell us what works.
I was told by my neurologist at U Penn that neuropathy isn’t curable,but the treatment keeps the disease from progressing,hopefully.
-
Like -
Helpful -
Hug
1 ReactionI also was given Tylenol and Benadryl pre infusion.
None of the above!
Thanks so much for sharing this information. Honestly, just knowing that there are others out there who have doctors who’ve heard of it and even some people who have benefited from it makes me feel better. When I first brought the idea to my doctors, I felt like they thought I was crazy. And even now the attitude hasn’t been all that supportive.
I do think the neurologist I connected with would be willing to order it if/when I’m ready. One thing giving me pause were the potential side effects, so I feel better knowing a little of what you did to manage. Thanks also for the resources!
-
Like -
Helpful -
Hug
1 ReactionBeen struggling with PN for years and my neurologist has doe nothing to help find the causes other than to give me Gabipenten and Pregablin which didn’t work. Tried Yale and earliest appointment was six months away. My PN is
up past my ankles and in my hands, painful and scary. Noticed many folks in this group have had significant diagnosis of their PN than I have been able to get. How do I find the folks that will put in the effort to discover and give me the care this needs on a timely basis? I’m extremely uncomfortable and at my wits end not knowing where to turn?