Quote:
Originally Posted by stillHoping
Hi Mat, I'm glad that you finally got a positive test results and hope it would lead to an effective treatment!
Regarding Rituximab and getting immunological treatments too late, well, my problems started two decades ago and it seemed as seronegative Sjogren, I've got POTS and other autonomic problems, the skin biopsy for SFN showed severe damage, my symptoms are mainly reduced sensation and numbness.
And I was also allergic to Plaquenil and Imuran.
After the SFN diagnosis my neuro recommended on IVIG but the HMO refused to fund it and approved Rituximab. I got the first infusions on Nov, and repeated it recently.
Although my POTS and SFN started years ago the Rituximab helped! The effect on the POTS was significant, my standing HR dropped from ~110-140 to ~70-90! My brain fog disappeared, and I had a lot more energy.
It is harder for me to estimate the effect on the SFN (I had a traumatic skin biopsy and refuse to repeat it), but it seems there have been less burning, tingling, numbness, my feet got warmer so the blood circulation probably improved, and I feel the perception of temperature in my hands improved.
It took about 2 months till the improvement started and it lasted about 2-3 months.
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Thanks so much for telling me your story StillHoping. Can I ask whereabouts you live as not sure what HMO represents - the English equivalent of NICE perhaps? I'm so glad to learn that Rituximab is working well for you. Here in Scotland the guidelines are set by the Scottish Medicines Consortium and SIGN. I had skin biopsies taken from each of my calves last year and they showed nothing.
However it was my island GP who took them and I'm not sure how valid they were although he did his best, but who knows how reliable the transportation was or how long they hung around for before being transported to the pathology lab. And he had never done this before so I'm not sure he took them from the right place on each calf or not. It was about 15 months ago and I was battling with pneumonia at the time
- as one does!
The pain has largely gone out of mine although I have the odd flare - mainly in my hands and wrists at night. Mostly I just feel tingly and rather numb - especially my feet and the left side of my face and mouth. But I am getting fasciculations a lot just now in random places - used to be a couple of my toes - yesterday my right elbow (both the areas where I have hard dry skin) then last night right down my right thigh as I got into bed I felt as if the bed was vibrating violently! So things are changing it seems and I'm not sure if this is because the Sjogren's has been left untreated for over a year now and is out of control - but this is what I suspect.
I will let you know how I get on with the rheumy on 24th.