Angry at Medical System and Rheumatologist

Alliand is in the USA. It says on the profile.

Dear Nadine and other members,

I am in the USA as another member has mentioned. The drug is methylprednisone or brand name here is Medrol. My diagnosis is very muddy. Every autoimmune test is negative. My CRP and SED rate are normal. The one finding was the presence of the PR3 antibody or C-ANCA+ at 1.6 titre as it is measured here and 1 granuloma annulare on my hand per biopsy. The biopsy mentioned the"family of granulomatous " skin diseases. And a very fast and dramatic response to Medrol.

However, my symptoms are square on with PMR/GCA which my maternal grandmother had when she was my age. Some physicians find this a diagnostic indicator of PMR. At the first visit , I was not having the GCA symptoms yet. The vision loss episode came after an attempt to taper the Prednisone per the recommendation of a Prof. at Johns Hopkins in their vasculitis clinic.

That was a one time consultation, and when I saw her I was feeling rather well on 16mg Medrol after 7 months on it. Her conclusion was that I was on an inflammatory continuum. She thought the titre of the PR3 was too low to be diagnostic for vasculitis "at that time" (pretty vague. )

And she suggested a 2mg. taper every 3 weeks. It was when I reached 8 mg., that I had the temporary vision loss. I went back up to 16 mg myself. It hasn't happened again.

That report prompted the rheumatologist physician assistant to start methotrexate and to taper the Medrol. So now my neutrophil counts are very high. I understand that is to be expected with steroids. ???? Per internet, usual cause is a bacterial infection which I have no sign of.

And I am going to find another rheumatologist. I will look into Dr. Peter Merkel in Philadelphia as one of you kindly suggested.

The question I have for this group is, since you are , or have been on steroids, did your white counts go high? Particularly the neutrophils ; Were any of you referred to hematology because of that?

And as I have mentioned early on, I had a mosquito- borne tropical alphavirus while in the Caribbean in June 2014; there are research studies showing a relationship between that virus (chikungunya) and autoimmune disorders 2 years later, especially in 65+ population. My problems started 2 years later, and were preceded by 2 viral type episodes ; it was a couple of days after the 2nd virus that the severe upper body pain began. I just toughed out the viruses ; they were just episodes of extreme fatigue with aches and pains without respiratory or GI symptoms. In between the first and second, I was fine.???

Now lost.

Alliand is in the USA.

I think that's probably true (is an understatement).

CNS Vasculitis/seizure (on another thread) is considered "so rare" because Drs don't know enough about it and if they get to read about it through "vasculitis" sites (not anywhere specific), it only reinforces their belief that it's rare, once more "and you won't be seeing this type of patient for many years". One of the problems I had over the years, leaving one consultant would/could be quite disruptive/time-energy consuming if you are still getting the diagnostic tests and especially if you are so ill (enough not to have enough energy and brain power).

Thanks , PMRpro for the link on WBC and GCA. I am curious why more Americans would be on the Aukland site than the UK site? And what difference that makes?The disease(s) are what they are regardless of country of citizenship, and, so far, the treatment approaches are virtually the same as I see it, controversies the same, and problems people are having with symptoms, diagnosis, treatment, etc. are shared by all of us whether in UK, USA, and Auckland? Just curious why that particular suggestion/comment? Thanks for your anticipated response.