Diagnosed with Peripheral Neuropathy as a result of Sjogren's Syndrome.
Burning/Numbness is unbearable.
Doctors suggesting IVIG and/or Cymbalta.
Desperate to know anyone's personal experience with either (good and bad) and if either provided any relief (ideally in a Sjogren's case).
Also ANY OTHER suggestions for burning/numbness relief would be so, so appreciated.
From the Heart - Thank You.
Cymbalta for me has been a lifesaver. Tried Lyrica first, but it didn't mix with my B/P meds. Cymbalta keeps me relatively pain free. Have not ever been offered the option of IVIG, probably too late, damage is done. Good luck!
oh, also use capsacin cream on feet at night (with socks), definitely helps me sleep through the night....
If doctors suggest IVIg, then your peripheral neuropathy (PN) is probably not closely connected to Sjögren's. That's because IVIg is diagnosis related, and not available to people with Sjögren's Syndrome.
I've had one infusion of IVIg ten years ago, related to the diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy. CIDP is another autoimmune disease, and *does* qualify for IVIg.
Most neuropathies feel pretty much the same.
Mine is now minimal due to the effects of Jarrow methyl b12 in high doses, started with low doses and gradually built up.
The single IVIg treatment I got worked amazingly well -- as does Jarrow methyl b12. They both, and other infusion methods, work to reduce damage to nerves. Cymbalta is not a treatment, nor is Lyrica. They work to reduce pain. What I've taken for the pain is Neurontin/gabapentin.
For more information use the search function of this site to search on IVIg, Neurontin/gabapentin, Cymbalta, and Lyrica. Also other types of infusions, such as plasmapheresis.
I'm really amazed that you and others who have posted similarly have been allowed by your doctors to walk away from a diagnosis of such a painful problem as PN without a decision on treatment. Perhaps that's because there were fewer options when I was diagnosed; now there are more, so you get to pick!
Gabapentine is not an antidepressant; it started life as an antiseizure medication, and was found useful and effective in the treatment of nerve pain of all kinds. It is hard to taper and get off, but that can be done with support from IVIg or Jarrow methyl b12 in effective quantities.
The key words here are "effective quantities," whether of pain relief or damage reduction medicines for PN. For example, doses of Neurontin or gabapentin start at 100 mg /day and go to 3600 mg/day maximum. I reached that maximum, then started taking Jarrow methyl b12 and gradually felt so much better that I cut back to divided doses totalling 300 mg/day.
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That's what I know about peripheral neuropathy. I may have confused you. Please listen to your doctor(s). My gut feeling is to go with the one who is an expert in peripheral neuropathy, a neurologist, or maybe a rheumatologist who has experience in another autoimmune disease such as Lupus or Multiple Sclerosis, that has a neuropathy component.
The simplest way to begin is to acknowledge the PN side to your diagnosis of Sjögren's (SjS), and that it makes treatment decisions more complex. You've been doing all the right things; listening to your doctors, and asking on this forum.
Much success,
Soycoffee
Hi SM2006,
Warmwaters just posted a question last week about IVIG treatment. search IVIG and you will find the responses including mine. In a nutshell IVIG did not work for me and gave me the worst headache ever. Cymbalta I tried for two days and made me so nauseous and I threw up. I could not take it. Just got done with two Rituxan infusions. Hoping it works for the nerve pain. Good luck.
I have neuropathy.
Always sero-normal, so no official Sjogren's diagnosis.
My neuropathy pain and discomfort has responded very well to Cymbalta.
And Aleve is my pain relief choice.
Keep us posted.
It's surely NO FUN AT ALL.
No one seems to talk as much about the loss of balance, the mixed messages from your legs to your brain, the loss of ability to ride a bike or walk easily.
Once the pain isn't the major issue, the horrible losses and difficulties take center stage.
And they aren't going to go away.
Hugs
Elaine
Ivig is readily available to patients with Sjogrens Syndrome in Ontario.. I know numerous patients recieving it and I am currently awaiting to start it myself..
I just started Lyrica. Only taking it at night. The dr's are going to titre it up. I am confused a wee bit. From what I have read isn't Cymbalta used for depression?
I am in the U.S. and my neuro problems are Sjogrens related and I am on IVIG.
The FDA does not approve IVIG for Sjogren's alone, but it is widely used for neuropathy, regardless of the cause (Sjogren's or other).
DryEyes,
Cymbalta is ON LABEL (tested and approved for) Peripheral Neuropathy AND osteoarthritis pain and discomfort.
Soycoffee: Thanks for the mention of Jarrow methyl b-12
Here is some research published by NIH on the research on Jarrow methyl b-12 and PN.
http://www.ncbi.nlm.nih.gov/pubmed/8021696
http://neuropathytreatmentgroup.com/nrs/clinical-studies
I am very excited about this possibility.
What are the side effects, what are the challenges in taking Jarrow methyl b-12?
What is the dosage you find effective?
Please keep me posted, Soycoffee.
Hugs
Elaine
One or two of my posts have been lost or modded out. I'll start a new thread on things related to B-12, and try to answer Carolina's (Elaine's) questions again, there.
Soycoffee
As I tried to assure you in reply to your email, none of your posts have been "modded out", and I want to assure all members that if a post is ever removed, the poster would be notified.
Something is going ON. I'm trying to post, and words get eaten. It may be my computer or my server, and thanks to Linda199 I know it isn't the moderator. I did not get an email from Linda, though. So that's more information for whoever can help.
Soycoffee