In April of 2015 I was diagnosed with polymyalgia and giant cell arteritis and was put on 60m of prednisone daily.
After a month my rheumatologist began a slow taper of the prednisone and added methotrexate to help with the withdrawal but had to discontinue the methotrexate because of side effects.
In April of 2016 I was put on monthly infusions of Actemera and tapered to 1m of prednisone daily and was doing well.
However, in Nov I developed stiffness in my neck and shoulders. Prednisone was increased to10m daily. In Jan prednisone was lowered to 9m but has not been lowered since even though doctor says my labs all look perfect.
At this point I’m losing faith in my doctor and not sure how to proceed with treatment. Because I have no family or support system in this country I have no one to discuss this with so I’m hoping someone out there can give me some insight.
I’ve recently been diagnosed with Sjorgens syndrome and was told treatment was the same as PR and GCA. so nothing further need be done.
I’m now dealing with facial pain, fatigue, chronic constipation, swelling in my legs and hands and insomnia.
My recent lab tests show high bilirubin scores, high total neutrophils, plus low eosinophils absolute, low monocytes, and low monocytes absolute.
I don’t know what all that means but when I question my rheumatologist about it she does nothing to alleviate my fears and just says “your labs all look perfect” and maybe you should see a therapist.
I’m very afraid of what is happening to me and would really appreciate advice from anyone out there with knowledge and information about my health problems.