Hi to All,
My diagnosis has never been entirely clear. Antibodies to PR3 at 1.6 in September, 2016; given diagnosis of C- ANCA vasculitis, but no lung or kidney involvement that I could feel or see. I have always thought symptoms were PMR, (with family history of my maternal grandmother having had it at my age. She had complete recovery after a couple of years on prednisone only) and when my temporary vision loss in left eye happened, and central retinal vein showed occluded on duplex doppler , there was evidence of GCA. with many temporal headaches upon awakening. It is also the opinion my 2nd rheumatologist that it is PMR/GCA.
Vasculitis specialist at Johns Hopkins University, Baltimore MD., Dr. Rebecca Manno, MD , Asst. Professor of Medicine and co-director of Vasculitis center within Dept. of Rheumatology ,who I saw in a lengthy one time consultation with new labs, 2 new scans, did not think I had vasculitis because PR3 titre too low in her opinion. And she decided to discount a granuloma annulare on my hand. All of her ordered labs came back fine; the PR3 antibodies were present but, within JH lab paremeters, not high enough to be diagnostic for vasculitis. That was April of 2017.
She concluded in her report that I was on a continum of an inflammatory arthritis which she thought maybe had been triggered by the tropical mosquito- borne chickungunya virus I had 2 years prior, but had no way of proving the link. The US, French and Indian government researchers found that a large number of people , particularly over 65 , who have had the virus, pop up approximately 2 years later with 0+ rheumatoid arthritis-like symptoms which are not responsive to non-steroidal anti- inflammatory drugs. There are a few cases linked to lupus and other autoimmune diseases. Prednisone is needed. For me, symptoms began on the 2 year anniversary of the virus within a week.
But I never thought , other than my vertebrae, that my joints were a big problem; it was the extreme upper body muscle pain ; myositis, not arthritis except for spine and neck, and with very poor sense of well being and extreme fatigue , poor stamina etc.
On imput from new rheumatologist and a hemotologist, I stopped Methotrexate. I started taking a supplement called Base or NAD+. It is the result of joint research project between the US Institute of Health and the non-profit Life Extension group . I read about the study in "Life Extension" magazine and validated their representations by checking on NIH studies, and it was indeed true that the US government jointly worked with Life Extension and made joint conclusions. The supplement contains Nicotinamide Riboside 250mg per capsule and Peterostilabene 30mg. 2 capsules recommended each morning; I started taking that. The research study conclusions do not purport to increase life span, but do conclude that these 2 ingredients ameliorates chronic conditions of aging and quality of life in the elderly. NIH/ Life Extension says it is as close to a "fountain of youth" as we can have at this time. It works on a cellular level. I can't say that I understand the biochemistry of it.
Gradually over last 10 days, I started to feel more and more my old self. My husband also has been giving me nice massages with 350 mg cannibus muscle balm and gel. My musculoskeletal pain is about 95% gone; brain fog gone; daily fatigue gone and mood much better. Able to take stairs and get out of tub spontaneously without worry of falling. Skin still a problem on lower legs, chest and arms, but appear to be pre-cancers with still some small cancers yet to be removed during ongoing dermatology appointments.
My new rheumatologist's office called today to say all my blood work came back normal. When I see him next week, I can get a copy to see what tests were done and at what lab.
If it is C-ANCA (perhaps limited vasculitis), is this a remission? If it is PMR/GCA , has it run its course; it is 2 years⁉⁉ I know it can last much longer in some, but 2 years is a benchmark used by many. Still taking 8 mg of Medrol and still on Tramadol.
For those of you who have had or are in remissions of systemic vasculitis, limited vasculitis, and/ or PMR/GCA having its course, what is your opinion? 🔬📚📖💊🔍💉
I am happy, but at same time wary that this is just temporary bit of good days, and the demons will return sooner or later. I see my new rheumatologist next week; based on how I was on June 5, he was planning to raise my Prednisone dose after blood work was in. Now he may want me to taper which is always a challenge.
Any input appreciated...Don't want to delude myself...Thanks for any opinions you can throw my way. Is it too soon to celebrate?
P.S. Another clue I am feeling better : started shopping for new clothes and shoes again, not to mention costume jewelry.
PPS As for nicotinamide, it is medically well known that people who smoke DO NOT get Parkinson's disease; something I learned when my first husband and his 1st cousin were diagnosed with Parkinson's . My husband passed away 3 years later from complications. Two neurologists acknowledged that fact, and there are some scholarly articles on subject, not that I would recommend anyone to start smoking. It is the nicotine that is good for the central nervous system, but now available in forms other than cigarettes which do cause cancer and cardio-pulmonary disease.
Thanks...
rituximab and vasculitis.
Following Rituximab, is this expected or is there cause for concern
HSP is ruining my life!!
Doctor says egpa does not affect your brain
