Anyone had success with IVIG infusions for idiopathic neuropathy ?
Interested in more discussions like this? Go to the Neuropathy Support Group.
We sure did, thank you so much for asking! We aren’t a ski and hiking kind of family anymore, so instead we bowled, went to iFly and tried axe throwing for the first time!
Did you have a nice holiday season?
Jump to this post
Nowhere nearly as exciting as you. My wife and I enjoyed the slow, quiet time at home, a two week break from doctors'appointments.
Blessings to you all the new year.
Jim and Marilyn
Hi, @katec – I moved your post on IVIG success for idiopathic small fiber neuropathy here to this existing thread on IVIG infusions and neuropathy so you can connect with others discussing this treatment.
Hoping that members such as @arcticmark @albiet @artscaping @fomdelia @azza1 and others can comment on whether they have had these infusions and whether they have had successful outcomes with it.
Are you considering IVIG infusions, or has your doctor recommended this as an option, katec?
@katec, @lisalucier Perhaps unfortunately, I have not tried IVIG treatments for idiopathic SFN. This is the time of year I check the research so that I am current. I am already committed to work on mobility and treating my own depression with a program of yoga, meditation, and mindfulness. My 3-month taper for an anti-depressant is over as of yesterday. Time to pay attention. Much good luck with your choices and we would appreciate you adding to the knowledge base for all of the Connect members who are taking on SFN. May you be content and at ease. Chris
@katec I am sorry to hear the meds didn’t work. How long did they keep him on the each medicine before they changed it ?
Generally he was on each med for about 6 weeks unless he was having an adverse reaction.
@artscaping are you now off antidepressants? If s good for you. I can’t go off imipramine. I wish you all the best
That's the same length of time I spent trying out antidepressants. The six week trial stretches into a very long time when you have a long list of meds to test. It took me two years. Ugh!
@albiet I'm so happy that my pain specialist prescribed Imipramine for my neuropathy pain. It's given me a lot of relief. I have noticed no effect on depression one way or another. I suppose it has made me a little happier, having my feet hurt less.
Hello there @albiet, it is good to see you posting and contributing. To answer your question, as of today, January 3, I have tapered off an anti-depressant I had been on for 4 years. I have substituted an additional tincture of 2:1 CBD:THC medical cannabis taken at the same time. 2 hours before bedtime. I am also meditating more easily now and that helps. Happy New Year. Be safe and free of suffering. Chris
@artscaping i am so happy for you that you were able to come off the antidepressant . What made you decide to do that? Was it imipramine or mitarzapine? How did u figure out what tincture to use?
Hey, thanks for the atta girl. It was the first medication I was prescribed when my neurologist gave me the SFN diagnosis. I am no longer depressed about that reality. The tincture and dosage ratio is helpful for sleeping when taken an hour or so before bedtime. I just rearranged. Be happy tomorrow…….Chris
Most insurance policies cover about 15 diseases for IVIG or "if it is medically necessary." They often deny based on you not having one of the 15 named diseases. If you have a good doctor they should be able to cite studies like Dr. Oaklander's and things about your symptoms that make them think that IVIG is medically needed for you. Good luck!
Hi. Do you have any knowledge whether insurance requires plasmapherisis be tried prior to seeking IVIG approval?
Connect with thousands of patients and caregivers for support and answers.
Already have an account? Sign In