I visited my "rheumatologist" who has left the care of patients to a Physician's Assistant while he is busy opening another office. She has paid no attention to my report of visual loss left eye, temporal headaches, and every other symptom of GCA. (except fever); Instead she wants to reduce my Prednisone by 4mg. more and prescribe a drug for marginal osteopenia! which was reversed from severe osteoporosis by removal of a parathyroid adenoma 1n 2012.. I refused and will stick with Calcium Supplementation as directed by the expert parathyroid surgeons. The DEXA scan result was the same when prednisone started.
My neutrophil count is 17,698 when 7800 is high normal,. My lymphocyte count is 692 when 852 is low normal, 0 eosinophils, and immunoglobulin G subclasses 4 is 1.0 when 4 is the lowest of normal.So she has given me a referral letter to a hematologist which I understand is probably correct.
I imagine she is thinking of a blood disease or blood cancer. At the same time, she is not addressing my risk of going blind or having a stroke.
Has anyone else had blood count anomalies like this from prednisone? Prior to coming under rheumatology care, my blood counts were 100% normal. Or is it a progression of disease activity.? Monday I will make an appt. with a hematologist of my choice. I am still exhausted, not to mention that I had to admonish a clerk for rudeness after waiting in a claustrophobic room for almost 3 hours! Later she tried to smooth things over.
Nor does she ever examine, listen to heart, lungs, etc; relies totally on scans and blood tests. I think it is time to ditch this practice and find another rheumatologist. Anyone else with these kinds of blood result problems.? Thanks all.
I think that you are not in the UK? Have you been diagnosed with Vasculitis or trying to find a diagnosis?
Alliand is in the USA. It says on the profile.
Why would I look at their profile? Never have as anothermember says
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.
I think Peter Merkel would probably be a good option - I don't know what he is like with patients but he can be a bit daunting! Stand your ground and he changes in my experience. He is certainly a pretty good rheumy.
However - personally, my opinion is that a patient with possible GCA needs an experienced doctor not a PA. Even the experts get it wrong ...