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A message of hope

Posted , 10 users are following.

EileenH
EileenH

I got this as a pm this morning. It speaks for itself:

Dear Eileen, I hope you are well.

You have not heard from me for a year but as you used to be a very frequent contributor I hope you will still get my message.

I can not remember how to write a message to all, that's why I am sending it to you and hope you will make it accessible to all.

This message is important because it is a message of hope for all who are suffering as I have suffered.

Yes I am using past tense. 

You might remember that, after having had breast cancer twice, I woke up one morning unable to move because of excruciating pein in my whole body.

I was diagnosed with polymyalgia rheumatica and treated with prednesolone (25mg) which made me very very sick. Beside putting on 20 KG fluid, I became half blind, my hair fell out and every organ of my body played up. I also needed additional Morphine patches for the pain.

After a year I refused to stay on this dreadful drug and got slowly down and took only morphine patches instead.

My body recovered, I lost the weight and my hair regrew.

After using morphine for a year I woke up one morning and felt no pain. I went cold turkey from 35mg down to 10mg morphine and was fine. After 2 years the

polymyalgia has disappeared as suddenly as it appeared.

So, to all of you, don't lose hope! I have been through hell and backwards and came out like the phoenix from the ashes. Praise God!

My very best to you Eileen and to all who are suffering.

Elisa

i would like to emphasise that Elisa used morphine patches only because pred caused her very severe side effects - it really isn't a real alternative for most of us and I do know some people found even morphine didn't cut the pain of PMR. It also does nothing to reduce the inflammation which is also causing damage.

I've posted it to show that PMR can and does go into remission. Elisa was lucky in that it only lasted a year - I had PMR for 5 years pre-pred and it never burnt out! It's always difficult to tell while you are on pred - but last time I tried to reduce to 5mg something was still there!

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  • barbara75814
    barbara75814 EileenH

    Posted

    Thanks to you Eileen and all the many others who give me, a newbie of one week, advice and interesting thoughts. It means a great deal. I have not found much communication with the doc in meeting with him very briefly, two times so far, and I have to leave with unanswered questions because of the brief (and distracted?) time he spends with me.

    Something tells me this is the norm. Is it? I'm trying hard not to expect too much, but I don't like leaving with unanswered questions. Anyway, once again: THANKS to everyone on this site in addition to you, Eileen--

    Barbara

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