Just a health update on me:
Since January I have been receiving IV immunoglobulin treatments once every 2 weeks while I taper off prednisone very slowly. I went to lowering my dose 1 mg every 2 weeks to 1 mg every 3 weeks, and now, at 5mg, I am lowering it 1mg every 4 weeks. That seems painfully slow, but it is working. So far, no big reaction. Each time I lower the dose it's a bigger step for my body to adjust, because 1mg was 1/10th of 10mg, but it is 1/5th of 5mg. Earlier this summer the rheumatologist raised my dose of IVIG slightly to help me over the spot where I had the relapse last time, which was around 7-10 mg of prednisone.
I continue to have mild rashes, but my muscle strength is recovering well. I no longer need physical therapy and have just begun working with a trainer at the local gym designing a program just for my needs. That is not to say that my strength is normal--the muscles that were affected the most are still pretty weak (for example--I am able to lift 3 lbs. in each hand doing shoulder presses above my head--prior to this illness I could do sets of 20 lbs. in this exercise) but they are improving. I am able to run again--I can go 1/4 mile without stopping now, and do a total of about 2.8 miles of a run/walk combination where I run 2/10 of a mile, walk 1/10, alternating.
I saw the rheumatologist last week and he is very pleased with my progress and has said I can slow down the pace of the IVIG treatments to once every 3 weeks. I will soon be starting an experimental treatment called low dose naltrexone which he wants to put in place to help me remain in remission once I am totally off prednisone.
The rheumatologist also told me that this is an illness that generally runs it's course, and his job is to shepherd me through it without too much damage to my body. I told him that I know of people who have had it recur sometime later, and he said that they must have been exposed to whatever triggered it again. Since most people don't know the cause/trigger that isn't that helpful, but I can only hope that once it is gone it will remain gone FOREVER!
So my prayers are being answered! If you have been praying for me, THANK YOU!! And please don't stop!
1 month ago