Just to refresh your recollection. I moved from Florida to New Jersey to see a special doctor in New York City because in Florida I had no guidance whatsoever. So at the end of April I met my new Doctor Who did the trials for a Actemra. I was then on 30 mg with some serious steroid myopathy. His message was to get me off the steroids quickly because I was so sick. So from 30 I went to 20 then 15. Blood work was OK didn't have withdrawal until 12. Now withdrawal is horrendous . He wanted me to do two weeks of 1 mg and that's what I did. Have been taking blood at A lab that I just didn't feel good about. Last week's numbers my CRP was 25 and my ESR was 24. My doctor, NY Rheumatologist said he didn't understand the CRP being so high and the ESR normal. But to continue to reduce. All this happened while I was at 10 and very excited about being there for the first time in years. But somehow I have to get to the bottom of what is going on with my body So I went to my GP and had blood drawn at the hospital. my CRP was 33 and my ESR 42. My feeling is the numbers were going up all along but the previous lab screwed up and these are my true numbers. My GP recommended I go to 15 mg which makes all the sense in the world except I know last time this happened I had to go to 30 before my numbers starting to come down. I also am seeing a very special doctor and have had lots of confidence. I had an appointment last week that I had to cancel because I was so sick from withdrawal I could not get into the car and drive 60 miles to New York City. I don't know what he has in mind and perhaps it is Actemra. But from what I understand I would still have to go up on the steroids again and then begin Actemra
I seem to get stuck at 12 whether I do the slow method and it takes me a year or this quick method. I'm not sure I have a question yet I did fax the new numbers to my rheumatologist and will wait to hear from him tomorrow. It is somewhat disturbing that even with the old incorrect numbers that he would want me to continue to reduce with the CRP of 25. There is nothing else going on my GP checked thoroughly. I guess I will take another blood test in a week but these numbers are scary and I feel I should be upping my dose. Is it possible that the withdrawal which has been seriously bad are bringing my blood Numbers up? ( I guess there was a question there).
A big thank you.