View Single Post
Old 02-10-2015, 03:37 PM
Synnove Synnove is offline
Member
 
Join Date: Jan 2013
Location: Florida
Posts: 314
10 yr Member
Synnove Synnove is offline
Member
 
Join Date: Jan 2013
Location: Florida
Posts: 314
10 yr Member
Default

Quote:
Originally Posted by MAT52 View Post
Hi again Synnove. I too had read that Rituximab/ Rituxan is a good biologic infusion for people with RA and SFN. I take it that your VectraDA test is the same as our DAS28 here in the UK? And that because your RA was only judged moderately active you didn't meet the insurance company's criteria? If so we are in exactly the same boat I think - although my RA is mostly low key these days. However my Sed rate/ ESR and PVC is often very high and fluctuates according to how stiff and unwell I am so I believe this counts for something with my rheumy and stops him dismissing my SFN symptoms as Fibromyalgia.

My thoughts are that the SFN for me has taken over from the joint pain and stiffness - it's as if my immune system can only attack one system at a time. So when the joint pain was at it's worst for two years the SFN was always there but as a warm tingle in the background like shebert. Then it seemed to blast through the RA symptoms and become the dominant thing and has stayed that way ever since - for over a year now. And I do feel it's got worse, not in intensity of pain but just much more widespread in it's distribution.

I also have strange bits of Raynauds in my toes and a follicular rash that comes and goes, dry eyes, nasal sores and bleeds and spells of dizziness, have lost my sense of taste and smell too and lately have been getting these headaches. I didn't sweat at all for a year and now I break out in weird sweats in my feet and hands suddenly for no particular reason. But no excruciating joint pain or swollen knuckles etc anymore.

So my rheumy will undoubtedly just shrug all the neuropathic stuff off and say there's nothing to be gained by trying me on another DMARD or starting a Biologic such as Rituximab. And I suppose this is why the diagnosis of RA is starting to count against me because I feel they hide behind it. And the fact I am so intolerant to drugs doesn't help. So frustrating!
Take care
Mat
Mat,
It would be good if your neurologist and rheumatologist agreed that the underlaying cause for your neuropathy is RA.
From what I understand, there is not much treatment available for SFN other than symptom management until one can establish the real underlying cause and treat that underlying cause.
It is here, I think, the importance of the doctors' acceptance of neuropathy comes in. This disease has for a long time just been disregarded by doctors.

Only a person PN and SFN can understand the pain. I have had a few doctors, and I think all of them neurologists, just look at me as if I were a complete idiot or something when I explained my symptoms. The comments are too many to mention here.

I also want to say, that regarding Rituxan, there have in fact been a few serious side effects, just thinking of your intolerance to meds.
Synnove is offline   Reply With QuoteReply With Quote