Finally made the move back to New Jersey.

[Nap1]

If you recall I could not find a doctor to treat me for GCA in Florida. So since June 2014 I have been through 7 rheumatologist and a trip to the mayo clinic in Rochester New York and floundering. Have been on very high doses of prednisone for a long time and developed diabetes and several other issues as a result. The really bad one is steroid related myopathy. Was ready for a wheelchair and then got to see one of the 10 rheumatologists in the US that concentrates only on autoimmune diseases. This particular physician had a father who started the autoimmune practice could be 40 years ago. He is one of the few rheumatologist that were involved with the trials for Actemra. Which by the way got final approval this past week. I arrived in New Jersey in the rain and cold quite different from Florida but excited that I would have someone who knows the disease and it gave me a lot of hope. My first visit was interesting He was very concerned with the steroid myopathy and my tremendous weakness and started a reduction plan. The plan is aggressive but he assured me that losing my eyesight was not going to happen because of GCA.

I have followed this site and your advice for almost 2 years now and it is difficult for me to reduce quickly when that is not what I have been doing. If it wasn't for the last flare I would have been down to 10 But with the last flair I could not get the blood numbers to move until I reached 30 mg. Interesting he did not recommend Actemra. I think he is looking to get the steroids lower without a biologic which has its own set of medical issues. I am nervous with the reduction which is 1 mg a week until 10 and then 1 mg every 2 weeks. I tore a ligament in my right hand which requires surgery and I have big issues with my eyes that require surgery. I am not healing so the surgeries are not an option at this time. I think the less stress has a lot to do with my ESR and CRP being normal even with the large reductions. I am happy to have a doctor so knowledgeable and caring. Also love the cooler climate. Any thoughts.

[SheffieldJane]

You are between a rock and a hard place Nap1. A doctor you have faith in wants you to do a rapid decrease of steroids because of the muscle weakness they have caused. I think I would bite the bullet and just do as I'm told. He has reassured you about your eyesight, your bloods are good. You are going to have to take great care of yourself while you do this. I pray that the ride is not too bumpy for you. I am glad the cool climate is helping.

[Nap1 in reply to SheffieldJane]

Yes I am going to follow his instructions. After all I travelled 1,300 miles miles and moved my residence just to have him care for me. I would be nuts not to follow his instructions. Even using the slow method of .5 per month I had a relapse at 11 and had to go back to 30 and stay there for 5 weeks. Thanks for the good wishes.

[PMRpro Ambassador in reply to Nap1]

"Even using the slow method" you will never get below the lowest dose that manages the symptoms. And that was almost certainly just above 11mg.

I think your new doctor is right - it will be pretty uncomfortable but he needs to see whatever it is in all its glory. It MIGHT be something completely different now.

[Nap1 in reply to PMRpro]

Found your response

[Marie1479]

So you are going to reduce 1mg a week without a biologic ?

[Nap1 in reply to Marie1479]

Yes I'm afraid so. Pretty scary and uncomfortable. I did it the forum way for 2 years and still relapsed twice. Like pro said could be something else now. Doctor did touch on that possibility. We will find out soon enough.

[casse]

Am in nj and wondering who and where this doctor is?

[Nap1 in reply to casse]

His name is Robert Spiera at 1088 Park Ave NYC.