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40 years of prednizone

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11 years 10 months ago #40527 by onlyhair
40 years of prednizone was created by onlyhair
I have been taking Prednizone for 40 years. Tried all other treatments including 4 rounds of Chemo.
Does anyone know what 40 years of Prdnizone does to your body? How do you offset the effects? :sick:

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11 years 10 months ago #40533 by Ann
Replied by Ann on topic 40 years of prednizone
It's possible that steroids will have caused some degree of osteoporosis. A dexa scan will show if that's happened. And then it can be treated.

Have you tried the newest drugs, Nplate and Promacta? What is your platelet count and what is it like when you stop the steroids?

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 10 months ago #40535 by Sandi
Replied by Sandi on topic 40 years of prednizone
I'm surprised that you don't have any noticeable side effects by now. I used to be on and off of high doses years ago, but for the past 8 years, have been on 10 mg's to 15 mg's daily. I have had a few stress fractures in my foot that won't heal, have had spinal stenosis, permanent moon face, weight gain, problems with teeth, thin skin that bruises and tears easily and arthritis. No osteo yet but I'm overdue for my Dexa scan.

There isn't much you can do to off set the side effects other than stop taking it. That will just keep things from getting worse. What dose are you on?

Have you tried the TPO's that Ann suggested? You might be better off.

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11 years 10 months ago #40547 by onlyhair
Replied by onlyhair on topic 40 years of prednizone
I have had my Dexa scan and it is good. Thank God I haven't had any stress fractures yet. I am a Land Surveyor and do a lot of walking, cutting brush etc. I can't stop the Prednizone or my count goes below 5,000 Tried all of the new meds, but couldn't function with those. I as you have the side effects of thin skin, but the worse is the lack of energy. I am starting to loose a lot of strength. Would like to be able to continue work, but getting concerned that it won't be long before I can continue my type of work.
Thanks for your answer. Im getting desperate in finding a solution since all of the Major Hospitals in Central Texas just tell me they can't help.
Thanks again
Don

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  • Melinda
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11 years 10 months ago #40548 by Melinda
Replied by Melinda on topic 40 years of prednizone
Don as Sandy said isn't much one can do to off set the side effects. Thin skin, after 40 years of prednisone I would think your skin is thinner than tissue paper - I know someone who has been on it 25 years straight, no time off from it thanks to an autoimmune disorder, and if bumps arm or leg on chair or door frame or whatever the skin is laid back and a horrible wound is there, has to gently bring the skin back over the wound and then dress it. Sometimes has to go to a wound center to take care of it. Also has osteoporosis, taking med but pain pills dull the pain.

What happens to you if your count is 5k - do you have symptoms? What is the dose you have been taking all these years? It is amazing that after 40 years of prednisone you only have thin skin and are tired, good for you.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 10 months ago #40550 by Sandi
Replied by Sandi on topic 40 years of prednizone
Oh yeah, I forgot about that one. I have lost a lot of muscle and that is probably the worst of them all. I can't walk very far or lift much. I try to keep going so muscles don't atrophy more, but the exhaustion is horrible.

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