Quote:
Originally Posted by Synnove
Hi Mat,
I also have RA and SFN. The SFN was diagnosed before the RA,
I have been on Methatrexate ( also due to treating a combination of vasculitis and RA), and I am now on Leflunamide to treat the RA, and on Amitriptyline and Lyrica to treat the awful symptoms of SFN.
My symptoms of RA are flaring, sometimes over periods of weeks, and then goes away for periods of weeks, but it is still VERY active. ( having a flare now)
The symptoms of SFN is more constant, but do flare. Symptoms include "burning feeling, like acid/salt, mostly all over, all 4 extremities, torso and including face mouth and gums.
Regarding the treatment with IVIG, I would think it would qualify as treatment for you due to positive Spinal Tap? Perhaps when you also have had the Skin Bx for evaluation of SFN that would help to qualify you ( if it is positive.) But also bear in mind, sometimes the skin bx might turn out negative. I think, at least here in US, the ratio of accuracy is about 89 %, if I am not wrong.
I was worked up for treatment with Rituxan, which has here been approved for treatment of RA, and it is said to have an excellent side benefit to also treat SFN.
It turned out after my VectraDA test, that my RA disease was active but in a mild disease activity.
I can so easily understand your frustration regarding diagnosis and treatment!!!
I have a question to you: What kind of adverse effect did you experience from Amitriptyline?
I wish you all the best.
|
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