What steroid dosage did you start on? Did you find the right dosage?
Hello I am wondering what dosage of Prednisone everyone started on and how long (days) did it take to get complete 100% relief (if ever). Or how long did it take to find the right dosage? I have trialed 3 different steroid doses (with help from my doctors) for the past month and no success yet controlling all the pain 100% or determining the right dosage for me. Maybe I'm impatient.
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wow, this is soooo helpful!!! I understand much better now. thank you. This means of course I now have even more questions - feels quite complicated in terms of trying to self-manage.
Do most PMR patients work with a rheumatologist? Or a primary care? My primary care seems to want to pass me on to Rheumatology and I am waiting, could be several months.
So I think I understand that the variations that I'm experiencing are normal for this disease, which is why people self medicate (I've been tempted but prednisone scares me and I'm only two weeks in.) Frustrating! I love the quote about homeostasis; that is a great reminder, life is like this....thank you.
Hi @deborah57, If you aren't already keeping a daily log with your level of pain when you wake up in the morning along with your prednisone dosage for the day, you might consider starting one. It was recommended to me by my rheumatologist and it helped a lot when I was tapering down on the prednisone.
It depends where you live and how easy it is to be seen by a rheumatologist. I was treated by a rheumatologist when PMR was eventually diagnosed. I think seeing a rheumatologist is the norm in the United States but probably not the norm in the UK for example.
There are "straight forward cases" of PMR that a primary care doctor can probably manage. There are also "complicated cases" of PMR when a primary care doctor might not feel comfortable with managing so patients get referred to a rheumatologist.
I was referred to a rheumatologist when a primary care doctor "suspected" PMR. My primary care doctor prescribed some prednisone to me but didn't manage my symptoms because he assumed the rheumatologist would. I was mostly "self medicating" for 6 month while nobody knew what was going on.
It took two rheumatologists conferring with each other to reach the conclusion I had PMR. My diagnosis came after one rheumatologist requested that I stop taking prednisone in order to see what was going on. I complied and stopped prednisone for a few days but not without a lot of pain.
When PMR was diagnosed, my primary care doctor apologized to me for referring me to a rheumatologist. He thought it was PMR when he first laid eyes on me.
My PMR journey was complicated and lasted 12 years before I was able to taper off prednisone. I had multiple autoimmune disorders and multiple prednisone side effects. My quality of life was deteriorating the longer I took prednisone.
My PMR pain was managed well with prednisone by my rheumatologist. My prednisone side effects were mostly managed by my primary care doctor. When adrenal problems surfaced because of my long term prednisone use, an endocrinologist was useful. An endocrinologist told my rheumatologist that I needed to get off prednisone. Getting off prednisone was possible after my rheumatologist switched me to a different medication.
Don't be afraid of prednisone but have respect for prednisone. When prednisone is taken short term, people generally don't have too many problems. Long term prednisone for more than a couple of years while on higher doses can cause a plethora of problems.
"So I think I understand that the variations that I'm experiencing are normal for this disease, which is why people self medicate (I've been tempted but prednisone scares me and I'm only two weeks in.) Frustrating! I love the quote about homeostasis; that is a great reminder, life is like this....thank you."
You are a quick learner ... especially when you say that you have even more questions! I asked many questions but the current standard of care for PMR is to take prednisone. Unfortunately, there aren't many alternatives to prednisone.
Treatment with prednisone for PMR has stayed basically the same for more than 50 years. Fortunately, there is more PMR research being done. Treatment is beginning to change and the future looks more promising.
Thank you for these insightful comments. I basically diagnosed myself (I'm a somatic educator with 30 years experience in the the field of bodywork) I knew my symptoms didn't fit any regular pattern of neuro-muscular dysregulation/dysfunction I was familiar with. Even with all my knowledge I had never heard of PMR. The bilateral shoulder pain/weakness was atypical and came out of nowhere. My bloodwork came back normal. But I responded to the Prednisone diagnostic taper immediately - like within hours, my pain disappeared.
Would you mind sharing what medication you took to take off the Prednisone? Do you still take it? Is your PMR gone? Your experience sounds complicated and enormously challenging. How is your quality of life now? If these are too personal to answer I understand.
"Don't be afraid of prednisone but have respect for prednisone." - Wonderful words of wisdom. Thanks for sharing your perspective. Grateful!
Thank you! This has been recommended by others. I will start doing this.
I was started on 10mg and did not find complete relief for a couple of weeks. After that I felt like superwoman and have not had a return of symptoms since. While tapering (now down to 4.5 mg), however, I quit feeling like superwoman and now feel my age which is 69. I am not a doctor, but it seems to me that the correct dose for PMR is the lowest dose that will completely relieve symptoms. If symptoms are not relieved in a couple of weeks, then either the dose is too low or the symptoms aren't caused by PMR. Many people claim to be symptom-free within a couple of hours. I was not and asked my rheumatologist for a higher dose. He said to be patient and he was right. Good luck! Let us know what yours says.
Good and complete post, Daddyo ! Wish more folks could read it. I see so many apparent self-medicators on here going in a convenient but incorrect direction on dosages and timing in order to eliminate any pain without being aware of the probable long-term costs.
Your posts should be the first thing people read when they come to this site. The Mayo Connect site in the US has a daily list of discussion threads and tapering schedules are always on that list. There is so much guesswork, confusion and distress around tapering. It can take weeks to get a Doctors appointment whether by phone or in person, leaving patients no choice, they either 'self medicate' or struggle to function through the day.
Perhaps the site admin could provide all new members with links to recommended reading ??
That was a confused post by me, i thought i was in the Australian site where its not as well organised as the Mayo site !!! Sorry