I will apologise now for the ranting and long winded post!
I have CTD & RA and I take a lowering dose of Prednisolone (down to 6mg a day from 20mg), Lefludomide, Gabapentin, Hydroxychloroquine & Omniprozal. I also had my first 2 cycles of Rituximab in December and touch wood since then have felt better than I have for a long, long time. I think, fingers crossed, that it seems to be working.
My problem is for the last 6 months I have had this burning pain (like pins & needles on steroids!) in my arms & legs. I told my Consultant and she sent me to the Neurophysiology Department for the electric shock tests. They came back saying that they were clear. Since then these pains have got progressively worse and at the moment I am not sleeping for more than 2.5 hours a night at the most. They are literally driving me mad.
I saw my Consultant last Friday and repeated the symptoms and said they were much worse and extremely painful. Her reply was "it was probably a slight case of Neuropathy but there is no cure for it and no medication that I can give you". As I was already on Gabapentin, I could take 3 of them instead of the 2 I take daily. She also said I could try taking Vitamin B Complex which might help.
Under normal circumstances I actually like my Consultant but this time I was a little surprised at her reaction. Because I told her that my CTD & RA seemed to be under control at the moment I got the feeling that she wasn't really interested in this other problem.
I would be grateful to know if anyone else has had these kind of pains and if so if there is anything I can do to make them ease up - Please!
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Bakbre
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Well I don’t think I can help you at all but I just wanted to sympathise. I’ve had this problem affecting my arms, legs and face for about 8 years now. I was initially diagnosed with RA but a few years ago this changed to Sjögren’s - which I definitely have and is the rheumatic disease most associated with small fibre neuropathy.
Small fibre neuropathy (SFN) can have many underlying causes and usually doesn’t show up in nerve conduction studies. Diabetes, alcoholism, chemotherapy, Sjögren’s, Vasculitis and Lupus can all cause SFN. More commonly this will only affect feet, followed by hands - and may slowly extend up into arms and legs. But the non length dependent type that I have, and you may well have too from your description, is most often associated with Sjögren’s I believe. For many the cause remains unknown/ idiopathic
Coeliacs is a potential autoimmune cause of neuropathy so if you haven’t already been tested this would be worth doing - or try just eliminating gluten. Also making sure your B12 levels are good is very important as Pernicious Anaemia is often a cause of neuropathy.
It’s all to do the the dorsal root ganglia which contain the cell bodies of sensory neurons apparently, if you want the scientific explanation that I’ve been given many times!
The reason most rheumatologists and neurologists aren’t interested in this problem is because, unlike inflamed joints, there is no modifying treatment they can offer to prevent SFN. Or rather there may be an effective treatment derived from human plasma called IViG, but it’s a very scarce resource and extremely expensive so in UK it is only used for those with a highly inflammatory neuropathy called Guillame Barre.
Rituximab can be effective for some with this condition so it’s a shame it’s not helping yours so far.
For me it’s the worst kind of pain I know of. Worse than RA pain and worse than giving birth to my 3 sons. My arms and legs rarely burn anymore but my lips and gums do and the rest of me feed cold and tingling 24/7.
Increasing your dose of Gabapentin or switching to Pregabalin or Amitriptyline might help ease the burning pain perhaps - although I can’t tolerate any of these myself. Some swear by magnesium spray and using deep freeze gel for the burning - but you would need to be careful using it on your hands and arms. It’s really just a case of trying various natural and prescribed nerve pain relief for most sufferers I’m afraid.
Thank you for your reply and your very good information. I agree with you about it being an awful pain - I don't know what to do with myself at the moment. At least with RA & UCTD, I know that evenutually with lots of painkillers and prednisolone the pain will subside, with this it's more a case of if it will subside.
I have an appointment with my GP next week and I will mention the info you have given me - ie the Coeloacs and B12 levels. I am okay on Gabapentin and Amitriptyline but they don't seem to do much good. At least now I understand why the Consultant was dismissive and anything but helpful.
I think most doctors do know that SFN is a lousy type of pain for sufferers. But their dismissive attitude, which I have encountered too, gives us the sense that it must be all in our heads or that we are exaggerating how bad it is. Same with the way many doctors seem to view Sjögren’s as a systemic disease. I assumed they thought it was a less serious condition to RA. But my GP assures me this isn’t the case at all.
He explained that they often skirt around or ignore these conditions because it makes them feel hopeless and rather gloomy that the medical community hasn’t yet found anything to prevent them progressing.
A friend with advanced MS says this is what she gets all the time from her doctors. They just like things that they can treat effectively such as early RA and Diabetes.
Thanks for that - it makes me feel better because I was beginning to think that I had imagined that the Consultant was dismissive and very uninterested.
As I said I have an appointment with my GP next week and I am going to discuss it with him. He is very good and does listen.
One last question - I hope you don't mind - how do you pronounce Sjogren's please?
Hello, did it start/ get worse after the rituximab? I get these pins and needles as part of a neurolupus flare but also get a neurological reaction to a lot of drugs (including rituximab).
I know some forms of chemotherapy cause nerve toxicity so you can get these symptoms, presumably with biologicals too although I haven’t heard much about it.
In my normal flares and after some immunosuppressants I get it in legs and hands but after rituximab it felt like my whole body was constantly having electric buzzing type shocks all over. I described it to the neurologist as it was like my blood was made of very fizzy lemonade! Mine wore off over a few months.
Yours sounds painful though and it’s always really worrying having these symptoms.
Fizzy lemonade is a very good description! Today I thought of my vibrations as being like a cat purring within my peripheries and this idea cheered me up a lot! X
No it didn't start with the Rituximab but just before I had it. At the time I was in so much pain that it just sort of got mixed in with eveything else in my mind. I was diagnosed with UCTD in 2004, put on Hydroxychloroquine and 2 steroid injections a year and I went into remission until 2014, when everything seemed to kick off again. I was then diagnosed with RA as well and for nearly 2.5 years I was put on lots of different tablets, ie Methotrexate, both tablets & epipen, which I couldn't tolerate, Amitriptoline which did preceisely nothing, Cyclosporine again which I couldn't tolerate and then Lefludomide which didn't work well enough on it's own and so I was put on Prednisolone as well, both of which I am still on. Because I was still getting a lot of pain and illness my Consultant decided to try me on infusions and that is why I was given my first dose of Rituximab in December, which touch wood seems to hae worked for the time being. It has only been really for about 4 months that this burning/pins & Needles started to get really bad with the last 2 or 3 weeks being the worst.
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