Prednisone tapering: How did you do it pain free?

@betsyhase, It seems like you are fairly early in your diagnosis and treatment of PMR. For both of my occurrences of PMR I my starting dose was 20 mg prednisone and usually within an hour or so of taking my dose, I was relatively pain free (less than 1 on my personal pain scale of 0 to 10) and quite a bit of the time was at 0 pain. Everyone is different and tapering can be a challenge. Some doctors do want to get you off of prednisone as soon as possible but I don't think there is a set rule for everyone. My rheumatologist had me keep a daily journal of my level of pain when I woke up in the morning and the dosage for that day. The main reason was if my pain level when I woke up was more than what I considered acceptable (less than 2) then he told me I should delay my taper for a few days when it was time to taper or possibly increase the dosage half of my previous taper down so that I was still making progress with my tapering schedule.

You might find this discussion by @dadcue helpful.
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
It sounds like the treatment is not controlling your pain very well. There may be other treatments that might also help. Have you discussed it with your doctor or rheumatologist?

@johnbishop
Thanks for your detailed reply. I guess in the beginning I was so glad for any relief and at the same time, fearful of taking Prednisone. I guess I will have to wait until after my next blood test before I can get my PCP to listen. At this time I am on a wait list for a Rhumatologist. There are very few in our area.

@betsyhase if you have enough prednisone, you may want to delay your taper.

I have had PMR for about a year. I started
Prednisone at 10 m which in two days took all the pain away. After nine months I began the journey to lower my dose. Over several weeks I was down to 5m. I stayed on this for several months and in late February began lowering again. I was fine on 4m but after two days on 3m I woke up in original pain and as soon as I took 4m the next day I was pain free. My doctor last week said after a few weeks I can start 3 m one day and 4m the next and alternate like this to see how that works. I have found that is a trial and error process.

@nrrchachi
My PCP is stuck on decreasing 1mg per month. A site he researched gave that coarse of treatment. I am sure I need to increase dose but since I have bloodwork ordered for this Thursday, I will wait to see what the results are before messing with the dosage.
Thanks for your feedback.

@nrrchachi the alternating worked well for me…..it

I have been a steroid dependent asthmatic for many years (unfortunately). It can be difficult to taper from Prednisone for many reasons. We call this the best "poison" which helps tremendously, but has numerous side effects. The swelling of hands and feet are common side effects, along with GERD/acid reflux. There is weight gain, hunger, insomnia, etc. Prednisone changes glucose metabolism and can cause increased blood sugars - even causing a temporary diabetic situation with possible medication needed to treat. This happens, especially in higher doses of Prednisone, but can be reversed with weaning.
Please see an endocrinologist to help with decreasing and tapering dose, as the adrenals need to adjust to decreasing Prednisone. Stopping cold turkey is very dangerous. There are also different forms of Prednisone which can be tried, once the patient is on 10mg or less. Please remember that it is the benefits of this medication which out-weigh the risks and side effects. Good luck.

First, welcome to the world of PMR. Never a dull moment. It is certainly a club no one wants to be part of but now that we are here, we work hard to make the best of the situation.
Your PCP means well but most likely does not have experience with other PMR patients. I am sorry you have to deal with that. I am sure if you have read many other threads you realize that the prednisone journey is very personal. Definitely not a one size fits all approach. Unfortunately, there is a national shortage of Rheumy's and every Rhuemy is overloaded with patients that deserve attention. I have a neighbor who has Sorgen's Disease and two of her three siblings also have it. They require a great deal of individual attention from their Rheumy's since treatment of Sorgen's seems very individual as well. If all of the problems in the Rheumy's wheelhouse are like this it does not take much to see how the Rheumy's are in overload.
Keeping a pain journal is good advise. It is a written history that your doctor can rely on more that your memory in the examining room. In your case possibly logging more than just morning pain would benefit you. Logging mornings pre steroid dosage, again around mid-afternoon and again at bedtime. This will help both you and your doctor "see the daily pain cycle".

Your dose is low for symptom control. It is important to
follow your lab results though how you function is the most important treatment guideline.
Check your blood pressure with an automatic home unit.
Lower your sodium intake if necessary. Mediterranean diet can be helpful for inflammation. Not all practitioners are aware that our cardiac risk is affected by systemic rheumatic diseases so ask about risk management. Advocate for yourself while waiting to see the rheumatologist.

@jabrown0407
Thank you. Yes, I agree that keeping a pain journal is a good idea!
At first I thought all was going well but things started to change and pain and swelling returned but to a much lesser degree.