Down to 2mg

[iblue]

I began the journey with PMR and Prednisone in July of 2021. Very scary time as theories were circulating throughout the world that the Covid-19 vax was responsible. I began tapering after 1week on a euphoric 40mg to 10mg which kept the inflammation and symptoms at bay. My blood tests did not confirm the diagnosis, only the lack of symptoms while on an appropriate dose of prednisone seemed to be accepted by my GP. Then my GP felt I needed a Specialist and referred me out to a Rheumatologist-which took months to find in my area of rural Northern California. I was then told by the 1st Rheumatologist to get off Prednisone quickly 1mg a month and PMR symptoms returned so I stopped tapering at 5mg, and then ended up putting myself back at 10mg. At this point in my journey I felt depressed and unsupported by my Rheumatologist who insisted on my following her instructions to the tee. Then she closed down and moved her practice elsewhere!

I had reached a turning point and discovered this website! I rejoiced in the wealth of information coming from a wonderful support group of fellow sufferers. I then began my custom tapering at the very slow pace and it worked! Also along the way I tried splitting my dose which also worked! Found a new Rheumatologist who supported me and proceeded with many days of stalling the tapering process because my body wasn’t ready. But I never had to jump my dose back up to a higher amount. Yes there have been the usual symptoms we all know so well, but they have only been temporary as I gave my body the time and space to adjust.

Looking forward I hope my body can continue to adjust to zero prednisone by the end of July 2024. I have to suppress my strong urges to drop quicker now that I’m reaching the end. However you all give me the wisdom and patience to keep going with what is working and it’s going very slowly but surely. Thank you with much gratitude 🙏

[LemonZest11]

What a positive, lovely post. Fingers 🤞 for you that you can remain patient and continue with your cautious taper. All the best!

[alangg]

My story is similar - it took me nearly 3 years to get to zero from 15mg. After joining this forum, I drew up my own tapering plan and gave it to my GP who was happy to prescribe according to the plan and also willing to allow me to adjust the plan according to my symptoms, workload, stressors, etc.

It's great when you find a medic that is willing to listen to their patient and work with them!

[Rowergirl in reply to alangg]

I have managed to get down to 3.5mg using the 7 week tapers and just starting to taper to 3mg. The GP initially told me that dropping by 0.5mg was unusual, when I said I was going to do that rather than drop by 1mg. I told him about this forum and the expertise in it, and he is now quite happy for me to manage my reduction myself, so yes, I agree, it is great when they work with you!.

[Orange_2022]

I've learnt the hard way that the 1mg a month is a recipe for disaster! The rheumatologist I saw initially signed me over to my overloaded GP practice after 2 meetings and the doctors leave me to it ...I've only seen one when I've asked to (think having PMR may help bump me up the queue). This forum has been amazing...teaching me to manage my condition and tapering of pred myself. I'm on 4mg and am staying here for a while....every step down takes time now. Good luck to you!

[cribbager]

Best wishes but do suppress those urges to speed up: I was on .5mg for a month at Xmas and was about to drop to zero but PMR wasn't having it!