Treatment options for slowing neuropathy progression?

[Dawnmist]

I see my Rheumy in 2 days, so I am trying to get some feedback so I know what to ask for.

Sjogren's is causing Small Fibre Neuropathy, and I still have not received any treatment to try to slow the progression. My Rheumy has attempted to get me access to both IVIG and Rituximab, but for various reasons those are not available to me.

The pressure/touch sensitivity of feet has reached the point that I need to use a wheelchair to get to work, get groceries, etc - if I don't, the pain reaches migraine severity and hangs around for hours. It affects hands/forearms, feet to groin, and is starting to affect back from the top of the shoulders to the base of the ribs.

I'd like to at least attempt to stop it progressing further.

What other treatments (not IVIG or Rituximab) have people had that have actually helped to reduce/control peripheral neuropathy/small fiber neuropathy that was being caused by Sjogren's?

[anita]

IVIG and Rituximab are the best treatments for Sjogren's based SFN.  They have used Cellcept as well, so that may be an option for you.  Cellcept has a good documented history of helping neuropathy...but not as much as IVIG.

Are you in the US?  I ask because there shouldn't be a problem getting IVIG if you have documented Sjogren's (lip biopsy/labs) AND documented SFN (skin biopsy).  With these two Dx's you should be approved.  What are the 'various reasons' you are being denied?  I mean, even medicare will approve it and we all know how picky they can be.

But anyway, ask your doctor about Cellcept.  It is an immune suppressor, so carries risk of infection, etc.  But I found it helpful in reducing SFN pain during the few months I used it.

[Dawnmist]

No, I am in Australia. Here IVIG is strictly reserved for treating conditions that can be fatal if not treated - and autoimmune small fiber neuropathy doesn't qualify.

I have documented SSA/SSB/ANA for the Sjogren's (plus symptoms), and abnormal QST results confirming the SFN (skin biopsy test is also NOT available in Australia), so that is the best level of confirmation I can get here.

For the Rituximab, it is not approved for use with Sjogren's in Australia. To get access to it, I need to go through a Lupus clinic. We tried that, but the head of the clinic decided that I was making things up, and therefore the QST test results were invalid (because it is not an objective test, despite it being the ONLY test available in Australia that can detect SFN), and that without that test there was no objective evidence that Sjogren's was doing anything at all to me and thus that there was nothing to treat. Since the neurologist's diagnosis was based on that test and on reported symptoms, the diagnosis was also considered invalid. I must say that she had no "objective evidence" that I had ever been dishonest, but I couldn't do anything about it.

So we wasted 6 months trying to get access to those medications, and in that time I deteriorated from walking an average of 6.5km per day for exercise to needing a wheelchair if I need to travel more than 100m. Since they are unavailable to me, I wanted to know what alternatives had been useful - better a treatment that partly helps that I can actually get than nothing at all. At least I can *try* something - it has more chance of helping than taking nothing.

[Joe S.]

Have you tried onion slice in your socks at night. I have not but it is supposed to help.

I use foot patches overnight. They are activated charcoal and dehydrated vinegar. They helped for many years.

Ionic foot baths seem to be the fastest way to detox your feet and reverse neuropathy.

All of these are methods of detox.

[Dawnmist]

I haven't heard of any of these, so no I haven't tried any. Do you have any links to where I can get some more information about them, and some user experience information?

[Joe S.]

starspauptown.com/ionic-foot-cleanse/

globalhealingcenter.com/cleansing/detox-foot-pads.html

(copy and paste these site names to your browser to go to the sites, Admin)

The above links are commercial sites. I do not have a link for the onion slice.

I know that if you have a bad cold, Vicks Vapor Rub on your feet will help it clear up faster. When my mom had a surgery go wrong. I had a bad cold and another family that told me of Vicks on the feet swore by it. A couple of nights and the cold was gone.

Vicks is a petroleum Jelly with camphor or eucalyptus in it.

[wendyoh]

keep us posted, sorry you are having trouble getting appropriate treatment-and Joe those are interesting ideas

this was useful post for me, it is making me wonder if SFN could explain certain pain attacks I have developed in last 5 years. There is a certain flare of pain I can get that will set off burning pain in feet, spine, eyes, teeth...dental problems can set it off and when I had sprained my foot and ankle and had a cracked tooth at that same time I noticed that pain in my foot could set off my teeth and vice versa. It has been odd--and really painful at times--because I have had pain for 27 years that started with neck injury but this chorus of different body part pain in symphony is new to me and it doesn't seem like "fibromyalgia"----wondering if SFN.

[Deb 27]

Dawnmist, I am sorry you are having such a hard time getting the proper treatment. It sure can be difficult for us sometimes. I wish I had some answers for you but I have not been through the neuropathy part yet. I hope you can get some relief soon. It sounds like you don't have any other options for 2nd opinions?

[anita]

Then I would talk to them about Cellcept.  It would be worth a try for sure.

Do they at least treat with immune suppressors?  Cellcept is in the class and is well known for helping Sjogren's and neuropathy symptoms.

[trc1962]

After a period of remission my neuropathy returned last June and began to progress. I was started on a high dose of prednisone and cellcept. I have slowly tapered on the steroids and have continued on the cellcept. I am better and the progression has slowed but it isn't gone and the dr. I saw in Seattle said IVIG is needed along with the cellcept and wean off the prednisone completely and that his neuropathy patients usually saw slowing or stopping of their neuropathy. So, that will be the next step and maybe your doctors can find a way to get it for you? Hoping for you!

[Dawnmist]

Thank you everyone. I spoke to my Rheumy today and asked about the possibility of Cellcept. He felt that the risks associated with immune suppression were too high compared to the potential benefits to try it.

So there is nothing more that they can do, and I will just have to accept that I cannot get any treatment to slow the progression of the neuropathy.

I'm only 40, it has already put me in a wheelchair, and I have a lot of years to live yet. I cannot express just how disappointed I am that the neuropathy is just going to be left to continue to worsen and further disable me without any attempt to stabilise it.

[wendyoh]

Dawn I am so sorry to hear this, please hang in there, maybe something will change with treatment options over there. Other folks on here have more experience with treatment options and advocacy, maybe they will have more ideas. It is so hard the variation in treatment from country to country and even within a country.
I am thinking of you....I know what its like to go from being really active to not.....but certainly a wheelchair has to be incredibly frustrating....am holding out hope for you. please keep us posted.

[anita]

That is such a shame, since people use immune suppression all the time for these conditions (AI disease) without problems.  And when infections occur, they are dealt with accordingly.  It should more up to you to decide whether you want to take some risks in order to have a better quality of life.  You should get another opinion for sure!!  Not to mention, you should be trying other neuropathy treatments (besides Lyrica).  That is what they try at the beginning, and there are many other options, like Neurontin, and of course, cymbalta, and a vast array of antidepressants (that are used strictly for the neuropathy benefit), etc  Then there is rx pain medication (beyond Tramadol).  So you are only at the lower end of the spectrum, with plenty of room to move up to better options.  You just need a doctor that has experience in treating your SFN.

The 'pressure/touch' sensitivity is called allodynia.  You might find more information about treatment options online by googling it's name.

[Dawnmist]

Hi Anita,

I am on the generic of Cymbalta (Duloxetine), and with Tramadol as well I cannot increase either Duloxetine or Tramadol any further without seriously risking Seratonin Sickness. I have tried Norspan patches (up to 20ug with no effect) and Mexiletine (again, no effect). I have not tried Neurontin, and from my brief look just now it doesn't appear to have any interactions with my current medications so it may be a good candidate to add. I've also tried Ketamine infusion, but I had a severe pain reaction to that (felt like I was in a pot of boiling water ALL over, my guess is that it shorted out the pain processing centre & locked it "on" full). I have attempted to drop out the Tramadol to increase the Duloxetine, but pain went through the roof (simply tying my hair back was 6/10 in my hands). I have tried capsaicin cream with severely increased burning. Lidocaine patches do help significantly to reduce the allodynia severity in the area around the patch - but not enough to allow me to walk any distance - but in combination with the wheelchair and the trio of Lyrica/Tramadol/Cymbalta they allow me to keep working. My pain specialist has been pushing for me to try spinal stimulation and gave me some documentation to read over Christmas, but I have decided that I do not want to undergo surgery for something that is just a mask rather than something that fixes the issue - and since then the sensations have started to appear across my upper back and shoulders as well, so it's more than just legs & arms now. I do not currently have legal access to medical marijuana, so that is not an option to try (though our government is considering allowing its use). There was some talk of trying to substitute Polexia for the Tramadol, but my Pain Specialist is not happy with that option. Things like amitryptaline have been avoided due to their drying side effects being a bad combination with Sjogren's.

I am not sure that there will be many doctors in Australia with much actual experience in treating severe SFN. Our population is not that high. So my docs have all been doing research to try to work out how to help.

I have allodynia, paraesthesia and dysesthesia. Most people don't know the terms (I know I hadn't before all of this), so describing it makes more sense to many people.

[bettyp]

Have you tried B vitamins, specifically B12? My feet were getting so painful and it really helped. My opinion is because of Sjogrens, we need more of these nutrients than our diets typically provide .  It can't hurt....