Update on my non-length dependent SFN
 

HI There

Thought I would update you all, I have just been to see my neuro today, who has advised all my blood tests normal, the only thing that came back was the positive skin biopsy , which possibly shows inflammation. I have had full work up from Rhumatologist , even lip biopsy negative. No SS. Nav 1.7 mutation normal.

As the biopsy has suggested possible inflammation he has suggested trying a 5 day infusion of steroids in hospital. He is also putting in for an application for IVIG ongoing treatment, not just a trial as he thinks this wouldn't be worth it.

I asked him if this could get better, (the neuro I see is a PN expert who works in London and South Africa), he said he has had patients there where their SFN 'burnt out' he means just gone away! so there are cases where things have got better for some. I just guess they are getting on with their lives now and not hanging around websites, so maybe that is why we don't hear of too many cases.

I will let you know how I get on with my steroid infusion, which I think will probably take place in September.

Overall the Neuro was very positive and said he would keep me under supervision as was worried he would pass me back to GP like some have mentioned on here. He said I am a very unusual case so gp's would n't know what to do with me!:)

Thanks for the update LouLou.
Great to hear your neuro is proactive - it would seem that seeking out a specialist with PN experience can lead to better treatment. All the best for good results from the steroids & IVIG. Can you please find out which steroid they give you?

HI Bluesfan,

I believe it is predisone infusion for 5 days. He said this is safer than taking tablets.

It was just by chance that I saw this neurologist, there are 3 at our hospital. I didn't like him at first as he seemed quite rude and think he was having a bad day! Before this neuro, I saw another private one who didn't have a clue what was wrong with me, I paid about £700 for him to tell me it wasn't MS and must be all anxiety. I went back and saw him again after I saw the NHS Dr, and told him that the nhs one thought it could be SFN, he told me probably better to see him as he is a SFN world wide specialist, every one raves about him that he is the best, so there aren't many of them around! This is why I am sharing everything he is doing for me on here, as if we all share our experiences then this may possibly help others who don't have such a pro-active neuro.

That's so good to hear. Ur neuro seems great and so willing to try something. please update is on the results of steroids. What is the goal with steroids? My gp said it would only be given for 3-5 days. Is sfn supposed to go away in that time? I don't really get what is supposed to happen in that short of time frame

Hi Canagirl,

How I understand it, is if it the SFN is caused by an inflammatory process then Steriods could possibly help, steroids reduce inflammation, therefore, will possibly reduce the pain. Neuro says there have been evidence it has helped some people. It may not help all as some sfn are not from an inflammatory process. I think with a non length dependent SFN theses have been shown to be more likely autoimmune or inflammatory process taking place. I think it is worth a try, I will update you to how it goes, is this something your neuro could not try for you? They really need to do more, can they not refer to rheumatologist so you can have a full work up? 2 year wait for pain management is a joke!

Does aspirin or other NSAIDs help with pain? This would be a clue that steroids might help. Steroids are mega anti-inflammatory and the others only moderately so.

If aspirin and NSAIDs do nothing for you, I'd wonder about steroids. The big infusions are what MSers get... and those are more effective than the oral types. One can tolerate high dose IV better than high dose oral.

I meant to say if it helps with the pain, then they would possibly give more infusions, not sure how far apart they would be.

I may be wrong as I am no expert but I am hoping if this does help, and reduces the inflammation, then this would maybe stop the disease from getting worse. Like I say, I am no expert and am new to this like you are.

Hope you are having a better day today Canagirl.:hug:

Hi canagirl
Depending on which type, steroids can have varying half lives (ie: how long they stay in the body) They also continue to act at a cellular level. eg: a steroid injection given in an inflamed joint can be expected to last 2-3 mths. These are given for temporary pain relief - they are not a cure. As you know steroids also have other not so beneficial side effects so they are often used as a last resort. Also depending on the type and cause of the PN they may not be suitable for idiopathic or other types.

I haven't tried asprin, i'm just taking Lyrica and Amatriptaline, haven't tried any NSAIDS either.

That's good to know that the infusions are better than the oral dose. I will see if this helps and will update you after.

I agree with this. Ibuprofen, naproxen does nothing for my neuropathy or muscle spasm pain. Tylenol even does a little something (don't understand that -maybe Mrs. D knows), but NSAIDS do nothing. Mine is non length dependent and all over my body and head. It is thought to be autoimmune/inflammatory type thing, but they are not sure.