Hi All. I thought I'd post an update - nothing very exciting but I wanted to ask a few things and describe my new diet and the impact it seems to be having on me.
I'm on the AIP diet (autoimmune protocol) in an effort to lose weight (I'm very overweight - mainly around my belly) and to try and shift my fatigue, improve my GI symptoms at both ends and generally see if it helps my Hypothyroidism, primary Sjögren's and Hypertension. In addition to Levothyroxine, I'm on Mycophenolate (Cellcept), Ranitidine, AdCal D3 and constipation meds plus the usual treatments for Sicca. I get my bloods tested regularly because of being on an immunesuppresant which helps with monitoring the impact of the diet too.
So the diet is pretty tough and there isn't a lot of comfort to be found in traditional comfort foods, just now. But on the plus side I've lost about a stone (6.35kg) in a month and so far my very diffuse small fibre neuropathy pain has been relatively well behaved for a couple of weeks. My PV (like ESR) and CRP have both come down from very elevated to quite elevated and I seem to have more physical and mental energy than previously. My eyes feel less dry although my skin is dry and Rosacea has been quite bad. My mouth dryness has been getting worse, as has constipation and burning lips and gums. My BP has dropped to normal but this could be due to an increase in my BP med, Losartan. I've been walking a lot more (daily step count between 8-20,000.
My rheum put me on Sildenafil (Viagra) to try and alleviate my Raynaud's - but it blocked up my nose, caused a constant low level headache and oedema so I decided to stop. The Raynauds attacks continue to plague me a bit despite the Scottish summer, but hey ho I'll just put up with these and the resulting chilblains.
I received a copy of my new rheumy's letter to GP (they prescribe and monitor the Cellcept) today. She wants me to increase my dose of Mycophenolate to the maximum, confirms Sjögren's as my primary disease and says she was unable to elicit a reflex response from either of my ankles. As this is where a lot of my aching pain and stiffness seems to come from I wondered if others here have this too as part of their Sjögren's?
Lastly does anyone else always have slightly raised IgG and IgA plus slightly elevated C3 on blood test results? I also noticed that my Lympocytes are slightly under as part of my full blood count. Is this same as a low WBC does anyone know?