Burning Soles

Mat48

I'm finding being back on injectable MTX at a low dose seems to be doing the job without polaxing me but it's early days so shhhhhhhh . But it seems that the rest of my body - which is celebrating no hives or aching ankles or wrists etc has forgotten to tell the soles of my feet, and these are once again burning with alacrity tonight. I thought I'd cracked it with the ultimate cure for peripheral neuropathy in the form of Nifedipine but it seems not to have done the job 100%.

Does anyone else get this? It arrived three years ago along with pain in knees and wrists and I thought that I was going quite nuts. And this is quite possibly still the case :roll:

villier

Having Neuropathy due to Sjograns my extremities burn all the time, when really bad I soak them in tepid water with Epsom salts which dampens the pain a bit, it is something you may want to try Matt. My sympathies to you.

Mat48

Hi Villier. Thanks - I do soak them sometimes but not in Epsom Salts. Will try this once I've obtained some Epsom salt from the chemist.

It is however very interesting that you say that Sjogren's is the cause for you. I haven't been formally diagnosed with Sjogren's Syndrome yet but have very dry eyes and my facial skin is constantly dry and tight now no matter how much I ply it with moisturiser.

I will see a specialist in connective tissue diseases a week tomorrow and am almost sure that most of my problems are Sjogren's related even though it would be sero-negative for me. Do you have any knowledge on how Sjogren's causes peripheral neuropathy of this kind? I know it can have a severe effect on the moisture producing glands but not sure how this relates to nerve pain although I am aware that it does. Mine is less severe presently now I take Nifedipine 20mg (slow release) and am back on a low dose of Methotrexate. I also see a dermatologist specialising in immunology the following week so it will be interesting to get second opinions from these two professors.

villier

Hi Matt, my Neurologist is positive it is Sjogrens that is causing my problems my Rheumatologist is still sitting on the fence, she has ordered some more tests, I will know the results next month. I have not really discussed yet how it is related I only know I have a lot of autonomic symptoms like the dry eyes, mouth, face, gastro, bowel and bladder problems. It also affects my sensory nerves which apparently are damaged at the root at the dorsal root ganglia so the nerves cannot regenerate. It is a question I will be asking my Rheumatologist next month all being that the tests are positive.

Ask your doctor for metronidazole gel for your face it helps a bit with the dryness I also use nivea soft as well. I suspect you already have drops for your eyes.

Oh! my Rheumatologist has sad if my tests are positive she reckons I wont have any different treatment to the IVIg I get every three weeks. Let us know how you get on next week it will be interesting to know what they say.

Mat48

Thanks so much. I really feel I'm getting somewhere at last Villier. I've suspected that my problems are almost all Sjogrens related for ages but my rheumatologist is only focused and will only concede that the dry eyes are connected with the RA he diagnosed. He seems determined to stick to assessing my joints only even though I've never had much visible swelling and currently only get achy feet and knees slightly. He would not concede that the intense neuropathy was connective tissue related and made no suggestions about treatments even though it was getting much more painful.

I do feel okay about being back on methotrexate as he suggested but I want to know what disease process I'm taking it for if that makes sense? I know that the drugs are pretty similar for autoimmune diseases and my GP pointed out that I stop hobbling and have less morning stiffness and less systemic inflammation when on DMARDs. My hives have cleared up a lot and the fatigue has lessened since restarting it. But I find it hard to accept things properly if I don't know what is causing them. I'm not good at all the vagueness and tend to interpret noncommittal responses as disbelief. Thanks for helping. I've never had any scans or been referred to a neurologist as my GP is determined that it is all CT/ autoimmune related. X

Mat48

Villiers I thought this might be useful although I'm sure you will have read it already. Someone from Sjogren's World Forum posted it for me. Mat x

http://www.hopkinssjogrens.org/disease-information/sjogrens-syndrome/neurologic-complications/#wrap

barbara12

Mat it just goes to show that we know our bodies ..I have just got to see a Rheumy after 4 years of OA and he thinks there is more going on,so I am glad that Marie has been able to give you advice Sjogrens...sorry spelling..and I do wish you well and hope you get the help you need..x

villier

Thanks for the link Matt, a lot of the tests mentioned I have had done, the lip biopsy came back borderline positive as did my ANA, the anti-ro and anti-la were negative. After been sent to London I had a skin biopsy done which confirmed small fibre Neuropathy. I recently have had EMG testing for large fibre as my condition has worsened also I had a cryoglobulin blood test done to check for abnormal protiens. I will find out the results next month unless my Neurologist phones me with the results before.

I am glad to see the mtx is giving you some relief, I think that was one of the drugs my Neurologist mentioned to me, but, as I said earlier because I am getting IVIg my Rheumatologist said nothing would really change. I get what you mean, I am a bit like you once I get to know all the ins and outs of things I can go away and get my head round about it.

Just a thought can you maybe ask your GP to refer you to a Rheumatologist that specialises in Sjogrens? as it is Rheumatologists that deal with it, it was my Neurologist that referred me to mine who specialises in Sjogrens.

Good luck Matt hope you can get some answers soon, I know what it's like.....................Marie x

Mat48

Thanks Barbara and Marie. I'm so pleased that you might finally be getting somewhere in your quest led by your instincts Barbara. We do have to trust our instincts to tell us that things are wrong - doctors haven't the same vested interest about our bodies as we have and they don't have to live in them 24/7!

Marie I know we have talked about our PN before and I'm lucky to have benefited from your advice born of hard experience. My Ro and La are negative too and my autoantibodies are equivocal also.

The rheumy chap I see next week for a second opinion has a special interest in connective tissue diseases and Systemic Vasculitis. He lists Scleroderma, SLE, RA and Rheumatoid fatigue - which he has written about. There is no mention of Sjogrens but I know that this disease is often a secondary CT disease for all of these diseases as is peripheral neuropathy. I'm hoping he will be able to look beyond the negative bloods and the lack of visible signs.

And if he gets me nowhere then there's the dermatologist. I think I might be very lucky in this regard too because I was referred for chronic hives in early February and phoned and phoned the people in charge of waiting lists because two successive dermatology clinics were cancelled for no apparent reason.

Finally last week, when the 3 month referral guidelines had been breached by my health board I phoned the woman in charge and asked if I could be flown to the big hospital to see a dermatologist because I'm away a lot in June and July. She agreed this was okay and tried to arrange an appointment but the senior consultant was busy. I told her I'm seeing an immunology professor and asked if I could go straight to getting immunology tested for skin in Dundee as I had heard they test for Raynauds bad Sjogrens there. She said no but then found me an appointment with this man who googling tells me is a professor specialising in immunology and Psoriasis with interest in biologic therapies. So my GP was rather impressed and said I was getting two possible hammers to crack the autoimmune nut! :P

I have got a folder made up with a timeline and photos to show them both and what has struck me most was that the PN started both times when unpleasant side effects forced me onto a lower dose of MTX. I did tell my rheumy that I had widespread pins and needles and burning soles as well as crawling sensation and horrible bouts of shooting nerve pain.But because the PN coincided with a reduction in my high ESR he shrugged and said it couldn't be RA that was causing my PN.

This is why I want someone with a wider interest in CT diseases because I feel sure this dropping of MTX dosage is relevant. And it has been awful for the 8 months since I stopped MTX - even when on Hydroxy it raged on.

On the John Hopkins site it says that immunosuppressants are needed for those with autoimmune small fibre neuropathy inflammation caused by Sjogrens . And my rheumy will only offer me MTX which I can't tolerate at any higher dose than 12.5mg!

villier

That sounds as though you might be getting somewhere at last Matt this Professor sounds the business, it was a professor that I saw in London, although, my Neurologist had a suspicion what my diagnosis was as it is very rare. It is a pity you could not be referred to my hospital in Glasgow being a teaching hospital there are a lot of fab doctors about and going to be one of the biggest in Europe soon.

That is a shame you can only tolerate a low dose of MTX, I couldn't tolerate any of the neuropathic drugs or they didn't do anything for me, that's why I was tried on IVIg an immunosuppressant drug as my Neurologist is sure as I said that it is Sjogrens that is causing my Neuropathy. I am in contact with a lady who has the same rare condition and she was the exact same as me.

You sound as though you are very well organised for your appointment it will be interesting to see the outcome, please let me know how you get on......................Marie x

Mat48

Marie I most certainly will. A woman on the British SSA helpline told me that Glasgow is excellent for Sjogrens.

The two professors I'm seeing are both at Aberdeen but I've heard from a person with Scleroderma and another with very similar symptoms to those you describe that the multi disciplinary Vasculitis clinic at ARI is also pretty brilliant and pioneering. I think my own rheum is good for straightforward RA but not the rarer types of autoimmunity. Unfortunately both professors will probably just see me for one off consultations so my GP says But if he diagnoses something more unusual he will at least be able to tell my rheumy - who recommended him as a colleague. I can almost hear the conversation "you have this one - she's a bit of an oddball - just how you like 'em!"

Take care,
Mat xx