I have just joined this group, I am so glad there is now a support group for this terrible disease
I was diagnosed with Neuro Sarcoidosis early last year, I had also been misdiagnosed with MS which i just found out last week
The sarcoid has been very hard on my body with me developing sores on my left leg at the shin which have not healed in over a year, but are improving somewhat with the help of a chronic wound specialist,
I had been put on Prednisone 60MG a day for a year, this med caused me numerous problems, that no one should have to endure I am now down to just 15 mg a day, and seem to be doing OK at this dose, though i am always afraid of adrenal insufficiency, I have already been there twice, and dread it happening again
Some days the pain throughout my body especially my joints are hard to deal with, and like most of you probably know, pain meds at least the right pain meds are hard to get right, i have been on some that have not worked at all and others that worked really well, but are only short term use, because they are addictive and my doc is not too happy about keeping me on them other than when i am at my worst
I have the sarcoid in my brain, heart, lungs and liver and kidneys, I know people have it a lot worse than i do, and I really feel for them,
would love to hear from anyone that has had more aggressive treatment, my doc at the hospital wants to try chemo with me once they have me off the prednisone, he thinks this will give me a better quality of life and aid in the relief of symptoms much faster, has anyone had this treatment ??
Look forward to hearing from anyone
I've not been through a more aggressive treatment but I wanted to say that I'm so very sorry you're having such a hard time with this. I was on 40 mg of Pred for 3 months and I thought I was in hell. I wouldn't be able to handle 60 for a year. My heart goes out to you. I'd love an update if you're still in the forum.
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