I don't want to add to all the thank you's and Christmas greetings - afraid people will tire of that. But I do want to tell you how much this forum means to me. Yes, I have a loving husband and family but NO ONE understands what I go thru like the polymalingerers. No one knows how to comfort and educate like the Aunties. No one makes me laugh like MB - so clever and "with it" - is he. I cannot believe that a support forum would mean so much to me. I am forever quoting things I read on here. I absolutely do not want anyone to suffer - but you cannot imagine (oh I think you can) what comfort I feel knowing that I am not imagining or blowing up symptoms - when I read someone so exactly in sync with me. You have been the difference between suffering alone and having a group of empathetic friends who I feel are pulling for me. Thank you all. Thank you for the time you take to answer, as I read all replies, that you for your research as it points me immediately to a credible source without spending all day on Google. And thank you for your kindness, good will and friendship. It helps so much.
I am one year in this mess come Jan 3rd. After relapsing on 7 mg of Pred and going back up to 20. I am now on Actemra fusion once a month and about to go down on preds to 9mgs from 10 mgs. Other than feeling about 95 and gaining 45 pounds having a very stiff back - that miraculously goes away and comes back again, aside from the depression, the itchy spots etc. I am not feeling physically bad. Good news is that the 4 BP pills I take a day seem to finally be working and I have lost 10 lbs of water.
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Alfryd
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What a lovely post, season’s greetings to you too. Perhaps next year ( let’s hope it’s a good one) you could tell us how you are getting on with Actemra infusions. I am really curious about it. That was an amazing fluid loss. It sounds like a quite well managed “ mess”. Take care. Nice photo. Depression really sucks - in a bit of a brown study myself at the moment with all my grandchildren on the other side of the world. 🙁
Lovely post! So agree. Here's hoping and praying that 2018 brings a move forward in this condition for you and many others. I presume you are in US as you're on actemera or are you just one of the very few that have been given it here in U.K.?
What a lovely post, it said it all really, this is without a doubt the best place to find Support, plus friendship. I read it everyday. Don’t post much, but could not be without it.. Have a VERY Merry Christmas..
Thank you! So true. What a forum. !! Just what the doctor NEVER orders!!! But don't we know that companionship and friendship and support and laughter is the greatest healer!
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Would really appreciate any info on Denosumab
One more question about flares
Important advice would be appreciated
A Cautionary Tale
A cautionary tale !
