Connect
← Return to Comprehensive Overview Of PMR
Discussion
Comment receiving replies
Hello all and @dadcue - it's snowy today so was able to watch the video. One thing that caught my attention was the mention of an 'aggressive taper ' that he says is worth a try ! Well I remember seeing this before - sure enough I posted this almost a year ago :
https://connect.mayoclinic.org/comment/1012486/ >> see the mention of a rapid taper to zero mg by month 4 = 16 wks. Dr Sattui was previously at Hospital for Special Surgery in!! Interesting - is this only a NY thing ? the city that never sleeps LOL I also think there was a Connect member ( maybe there are many others here?) who was /are using a rapid taper . I,m going to link this one of the recent conversations about tapering !
"Sebastian E. Sattui MD, MS, is a rheumatologist and is certified in rheumatology and internal medicine by the American Board of Internal Medicine. He received his medical degree from Universidad Peruana Cayetano Heredia in Lima, Peru and completed his residency at University of Alabama at Birmingham, followed by his rheumatology fellowship and advance rheumatology/vasculitis fellowship at the Hospital for Special Surgery/Weill Cornell Medicine.
Replies to "Hello all and @dadcue - it's snowy today so was able to watch the video. One..."
Connect
"I also think there was a Connect member ( maybe there are many others here?) who was /are using a rapid taper."
----------------------
How to taper off prednisone when treating PMR is a mystery to me. I have come to the conclusion there is no "best way." It might depend on whether or not it is really PMR that is being treated.
There is anecdotal information that gets repeated over and over again. However, repeating something often doesn't make it true or research based. The "10% reduction guideline" and elaborate tapering schemes like "Dead Slow Near Stop" (DSNS) aren't research based.
I can speak from personal experience that tapering from 60 mg to zero in 30 days was doable for uveitis flares and painful flares of reactive arthritis. I did this countless times. I never experienced withdrawal symptoms.
Remission of uveitis was easily achieved. Remission lasted for approximately a year and sometimes longer when I took ibuprofen daily. The remission wasn't permanent and flares recurred but I would have long intervals when no Prednisone was needed.
Uveitis flares were easy for me to treat because I could actually see the inflammation inside my eye. I don't mean the external redness of my eye that was visible. I could see the inflammatory cells floating around inside my eye. My ophthalmologist could see more than I could with a dilated eye exam but he acknowledged that my estimation of the amount of inflammation was very reliable.
"In intermediate uveitis, inflammatory cells can be seen suspended within the vitreous. These cells are appreciated similar to that of anterior chamber cells but with the slit lamp focused behind the lens. Larger inflammatory collections known as "snowballs" may also be identified within the vitreous. An indirect examination with special attention to the pars plana is crucial in making the diagnosis as pars plana exudates known as a "snowbank" may be found. A fluorescein angiogram (ocular dye-based imaging modality) may find vascular ferning (vascular leakage). In some cases, there can be some spill-over of inflammation into the anterior chamber blurring the lines of differentiation of an anterior versus intermediate uveitis."
https://www.ncbi.nlm.nih.gov/books/NBK540993/
I can't explain how I knew how much inflammation there was inside my eye but I knew. After my ophthalmologist realized that I knew how much inflammation that I was treating he gave me free reign to treat myself. He said I was "skilled" and I could do a better job at tapering myself off Prednisone than he could.
---------------------
My "skills" only worked for uveitis. Everything I knew didn't seem to work for PMR. That was why my first rheumatologist labeled me "non-compliant." I thought I knew more than she did until I humbly admitted that I had no clue what I was doing for PMR. She said a "stable dose of prednisone" was more important than tapering off prednisone quickly. She also said PMR would be treated "long term."
Now I believe "long term" treatment with Prednisone comes with serious consequences. Long term treatment with Prednisone is the current standard of care for PMR. My hope is that the standard of care changes with more research instead of anecdotes.