I have small fiber neuropathy that typically seems to come on in what I call "flares", often very intense, and then it might subside almost entirely for sometimes weeks at a time if I'm lucky.

I have psoriasis and also a positive ANA. It's consistently positive and the last time it was checked at was at the highest level of positive.

I sometimes think stress is one of my biggest triggers. Also, I sometimes think I notice a correlation between my psoriasis flaring up when I also have the small fiber neuropathy flares.

Bottom line, my doctors at Duke have suggested a 8 week prednisone trial. 40 mgs for 2 weeks, then 20 mgs for 6 weeks, before a taper. They have me diagnosed definitively with sfn through 2 skin biopsies. They also have given me a diagnosis of "mixed connective tissue disorder".

I have asked both my neurologist and rheumatologist about IVIG and they have said that the prednisone respone would be a good indicator as to whether IVIG would be effective, so I should try the steroid trial first.

Does this make sense to anyone? I am currently taking Lyrica, Plaquenil, and a low dose of Cymbalta but am getting eaten alive by the neuropathy right now and have been for a little over a week. Most of the calendar year it has behaved fairly well on the whole.

Just wondering what others think of this?

Thank you!

Hi Davidl
I'm not able to give you an answer on prednisone itself but my experience with Hydrocortisone (H/C) (another corticosteroid similar to prednisone) may be useful for you. I'm on what's known as a maintenance dose of H/C: 25 mg daily for Addison's Disease (adrenal insufficiency) - I also have Trigeminal Neuralgia (confirmed) and PN (unconfirmed). The PN symptoms include burning feet, numbness - started in feet - now left hand, right leg, left ear etc. Recently needle-like stabbing pains have started all over. I also get shortness of breath and mild stomach pains. With the H/C I have to increase my dose if I get any sort of illness, injury or trauma. This can be anything from double to 10x the normal amount depending on severity. I have found that the TN was greatly reduced when I had to double the dose for about a week and completely disappeared temporarily when I had 10x (during appendectomy surgery last Oct) - it has come back but not as severe. However the PN numbness was unaffected by the increased dose - I self-monitored this while in hospital. This lack of response may be because of the type of PN I have (most likely auto-immune but possibly also with B12 deficiency and/or antibiotic use). I have read that corticosteroids have been successfully used to temporarily provide relief for some types of PN - sorry I can't remember where I read it or if it was for SFN. Someone will probably come along here that can give you more accurate info. If you decide to go ahead with the trial I hope you get some relief. Please come back and let us know how you get on.
Please note: 1mg Prednisone is roughly equivalent to 5mg Hydrocortisone

Actually David, the statement comparing IVIG to steroids makes no sense at all. They are two entire different approaches to treatment and work in separate ways.

The IVIG is basically an immune modulator of sort when used for autoimmune conditions and neuropathy. It helps keep the autoimmune process of attacking your own tissues at bay.

Steroids on the other hand is an immune suppressor that works by reducing the attack on your tissues/nerve fibers/etc that is based from an inflammatory process. The steroids will reduce the inflammation and therefore help to allow better function of the nerve fibers as well as healing and growth.

So the steroid approach will show nothing as for how your body will respond to IVIG...NOTHING. If you have an inflammatory based neuropathy, then you will likely do well on a short course of steroids. If your neuropathy is autoimmune based, then IVIG would provide a better treatment course and reduce those flares.

Frankly, the steroid course is a good idea...it will tell you if it is inflammatory based and how well you will respond to reduced inflammation (whether your symptoms improve). But of course, steroids carry HUGE risk factors for many different body systems. They can reek havoc everywhere and damage is often permanent. Bones, skin, blood sugar, eyes, adrenal glands, weight, and dependency (Cushing's syndrome) are all reasons to use steroids with extreme caution...for SHORT term.

IVIG carries it's own side-effects...serious ones. The kidneys must be monitored as IVIG is protein based and hard on the kidneys to process this amount. There is also blood clots to worry about and infection (it is a blood product). You won't get HIV, Hep C, etc but there are still other viruses that can get through the production of IVIG.

But anyway, if your symptoms seem to be more inflammatory based, then give the steroid course a try...you'll know rather quickly if it will work (it won't take 8 weeks to see improvement). Most insurance companies want you to try (and fail) conventional treatments first before they authorize IVIG anyway...so you likely won't have a choice about where to start. IVIG is extremely expensive and in short supply (being a blood product), so criteria to receive it is fairly strict.

I had to recently use prednisolone (sp?) for sciatica. I only used it for 3 days. It did not help my sciatica at 25 mg daily. MY GP only said to take it for 3 days.

Anyways, i did not notice any difference in my PN, but...it does mess with blood sugars and if your pn is affected by glucose that is something to be aware of.

Hi David,

I'm glad I could reach out to you because your story sounds very similar to mine. I tried the same meds you're taking. My neurologist at Duke had me on prednisone for about 6 weeks. It is definitely worth a try. If you've ever had a steroid dose pack before and never had negative side effects, then this won't be much different. I noticed no side effects for the whole 6 weeks. Unfortunately, the prednisone didn't make a difference in my symptoms. On the plus side, if your neurologist decides you might be a candidate for the IVIg, he'll have to prove to the insurance company that you have tried and failed X, Y, and Z treatments before trying an extremely expensive drug.

My insurance denied me once in September, then my neuro appealed and they denied me again in the fall. I just had some more labwork and he's gona try a third time to apply for the medicine. Unfortunately, the drug to get set up at home was going to be estimated 14,000 dollars. But, the company who sells the drug actually has a financial aid application and they are very willing to work with you on helping out as much as possible.

Let me know how the prednisone goes. I read a study about the IVIg helping 10/11 subjects! (small study, but such a rare topic!)

-Jordan

Particularly since we are both being treated at Duke. It is very helpful to me to know that you had a similar recommended treatment and I appreciate the feedback very much. Maybe I will give the prednisone a try. My small fiber neuropathy, historically, has come on in what I call "flares" and I try to wait them out so to speak. But this latest one has been a little more unrelenting than others I have had in recent months.

Thanks again.

David