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The pros and cons of Prednisone
Polymyalgia Rheumatica (PMR) | Last Active: Jun 14 10:13am | Replies (34)Comment receiving replies
Hello I am an English male 76 and resident in France, I was diagnosed with PMR 13 months ago under the most amazingly good care of the French health system. . I could not walk and the pain in my shoulders meant difficulty getting in and out of bed, I could not roll over because of shoulders and hip pain. Dressing was difficult, socks and shoes impossible to put on myself.
Diagnosis was confirmed by PET scan with infusion and my immediate successful reaction to 20mg daily Prednisone. I thought I had made a complete recovery in a month or two but then the dreaded flare-ups start. In some ways they were worse than the original problem.
I found comfort sitting in my armchair and on one occasion slept for four nights sitting up in it. Prenisone was increased to 30mg and then down to 25 before returning to 20mg.
I had a bone density scan in which found my bone density had fallen, this is caused by Prednisone depleting the calcium. I am not able to walk very far.
During this year my vision has become affected and regular visits to the Opthamologist has shown a significant increase in occular pressure, she was horrified that I was on 20mg and is endevouring to reduce the pressure with eye drops.
After 12 months my doctor referred me to the Rheumatologist who felt that I was in remission and started the taper 17mg for one week 15mg for the next two etc. While I was there he took Xrays and arranged a CAT scan
He found four fractures in my vertebrae, the worse being in my sacroilliac which is why I can't walk more than a few hundred yards. He is quite clear that this is caused by Prednisone.
The corrective procedure for the calcium depletion will be an injection a day for the next two and a half years!
I have taken other damage to knee cartilage and excruciating PMR groin pain has now become a suspected hernia, I await an ultrasound examination in two weeks time.
The conclusion to this saga is what one of the forum members have already said "PREDNISONE IS NOT ALWAYS YOUR FRIEND" it is a cruel compromise between being crippled, loosing your eyesight, and having a catalogue of damaging side effects.
I could have started the taper earlier but was still in discomfort and feared the return of pain.
My advice to you all is never miss the opportunity to taper down if your medics recommend it.
Replies to "Hello I am an English male 76 and resident in France, I was diagnosed with PMR..."
"My advice to you all is never miss the opportunity to taper down if your medics recommend it."
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Good advice ... but a doctor's duty is to make the tapering process as painless as possible. I was never pressured to taper lower. In fact, my doctors were very liberal with giving me enough prednisone. Once I somewhat accused my rheumatologist that she only prescribed me prednisone because she thought prednisone was what I wanted. I wrote that message as tactfully as I could.
After that message, my rheumatologist and I had a heart to heart discussion. I admitted to her that I simply could not taper off Prednisone and "refused" to try because it was too painful. Not long afterwards, something new was tried. Actemra was FDA approved for GCA but not for PMR so my rheumatologist needed to get Actemra approved for me before prescribing it.
I almost refused Actemra because some people said Prednisone was the "only option" for PMR. They actually called my rheumatologist some names and said doctors in the USA were "breaking the rules" by giving me Actemra for PMR.
To be honest---Prednisone was never my friend but I did have a love/hate relationship with it. I think many Europeans are now getting PMR/GCA treated with biologics on a case by case basis. I recall someone in France and also Germany and both had good results. Some people don't have good results.
I'm glad you are getting amazingly good care from the French health system. Too many people blame the health care system and doctors for their woes. I never felt like anyone or my health care system caused my pain and my inability to taper off prednisone. I believe people don't always have the best access to health care when they need it. There are simply too many unknowns to cast blame on anyone. I can't blame Prednisone either because, until recently, Prednisone was the best treatment for PMR ... Maybe things will change in the future.
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Hello @bobroberts, Welcome to Connect. Thank you for sharing your experience treating PMR. I agree that prednisone is not always our friend but sometimes is the only game in town to help. My rheumatologist had me keep a daily log of my pain level in the morning and the dosage amount for the day when tapering down to get off of prednisone. He also emphasized that I need to listen to my body and if my pain level was too high then to slow the taper a little or wait a week or so.
Do you keep a daily log?