Feelings when tapering: My journey

Hello @tiateacake, Welcome to Connect. I don't think it's something you have to get used to but more like something you have to learn to manage when you are tapering. What helped me was keeping a daily log of my level of pain when I woke up along with my dosage for that day. That allowed me to make better decisions when it came time to taper down or back up a little. This was suggested by my Mayo rheumatologist as everyone is different when it comes to PMR. There are a number of discussions on tapering off of prednisone that you might want to scan through to see if something might be helpful. Here is a link to the discussions and comments on tapering off of prednisone and managing the symptoms - https://connect.mayoclinic.org/search/?search=prednisone%20tapering%20and%20managing%20symptoms.

Do you keep a daily log of your level of pain and prednisone dosage?

My doctor told me to not hesitate to go back up to knock pmr down if symptoms begin to emerge at a lower dose. There is nothing wrong with adjusting the dose to find where control of pmr is effective.

For many of us pmr can take a year or two to burn out. Perhaps alternating between 12.5 and 10 would be worth a try. Dropping from 15 to 10 in 6 weeks is a pretty aggressive taper.

I have been following the 10% "rule" of tapering 10% every month and have had no issues from 10 to 2.5. 12.5 down to 10 (at what rate?) seems like a big jump to me. Something to consider. Of course, everyone is different!

Thank you for the very helpful replies to my question about tapering yesterday. Later in the day I noticed my left leg was feeling weak so obviously pelvis was not happy. When I picked up my last lot of Prednisone I was given 56 1mg extra. I even drove to see the person who arranged the prescription which gets made up at a chemist near me. He went off to see the practice nurse I had seen at the start. He returned and still did not tell me if they had made a mistake or if the extra were just in case I needed them. So frustrating. This morning I opened one of the 1mg box so I could add the 1mg to my 10mg dose. I will phone the Dr surgery later and inform them that is what I am doing. You never know I may even get a return phone call. Anyway here is hoping that this puts the PMR back to sleep.

The 1mg tablets you got may not be extra. You will need to have them on hand to prepare to reduce below 10, whether you take 9.5mg (1x5mg + 4x1mg + 1/2x1mg) or 9mg (1x5mg + 4x1mg), so you need a range of tablets on hand. Or did they think you had reduced too much at once by reducing 2.5mg in one go... has your doctor clarified that yet?

I know I will need the 1mg when I reduce to 9mg in less then 5 weeks but it just seemed weird to be given them 6 weeks before needed. Very frustrating not having a face to face conversation and told anything. I remember days when a chemist would talk to the person about their prescription and possibly put their mind at rest. I had to stand and wait for over 30 minutes for one of my prescriptions and I noticed then how much things had changed. But I guess that is progress for you. I could use my NHS app to contact my surgery but I will use the phone instead.

Can you ring the pharmacy to prepare your scripts before you go in? My local chemist tells me by phone what scripts they have left for me and gets them ready in 20-30 minutes. I take my time to go in and am straight in and out of the chemist in a few minutes. Nothing worse than hanging around potentially sick people waiting for scripts. I always wear my mask so they know I'm serious about avoiding catching anything and getting out fast.

I realised that day I had to give them at least 4 days to be able just to pop in and pick them up. I know what you mean about sick people, we have loads in this town with Covid at the moment but the weather is pretty awful so dog walking was bliss as no one out. I did wonder about wearing a mask in the winter flu time.

I can tell you aren't in the USA so I don't really know how it works there. My only comment is that the quantity of prednisone tablets I received was never a precise amount. Most of the time I had a stockpile of every mg tablet available. My doctor wanted to make sure I wouldn't ever run out of prednisone. I would let my doctor know what tablets I needed.

I will never forget the time when I was having a rough time because of another condition that wasn't PMR. I messaged my doctor that I thought I would need to take 100 mg of Prednisone for a few days. I added that if I took that much I would quickly run out of prednisone. I included the reason for my request. My doctor immediately called me back. He knew my conditions and that I wouldn't ever exaggerate my pain. My doctor simply asked me if I was sure 100 mg for a few days would be enough. He also said if I needed to be seen to let him know. He called the prescription in and I picked it up the same day. The pharmacist asked me if I was aware of the side effects and I said, "yes."

My tapering instructions were never precise. Sometimes the label on the bottle of prednisone said "taper as instructed." That was fine most of the time. I wasn't ever given any precise instructions about how to taper unless I asked. For PMR, my rheumatologist would set goals for me but not detailed instructions. She always worried about how much Prednisone I was taking. She wasn't ever judgmental and seemed to understand I was trying to taper off albeit without much success.

I agree with John keeping a log was very helpful when I recently had to deal with an apparent GCA attack that reduced sight in my left eye. I was put on 48 mg/ day Methyprednisolone. Reviewing my past PMR tapering history was very helpful in discussions with my rheumatologist as we setup a tapering protocol as I continued GCA/PMR journey. Prior to this, I had tapered to 1mg prednisone every other day. I was diagnosed with PMR 9/2021 my log and information from this site along with a great rheumatologist who listens has kept me steady on this journey. Always pay attention to what your body is telling you. While tapering my rheumatologist gave me these points to keep in mind as symptoms may occur and are similar for each:
1. Recurrence of the inflammatory disease (PMR).
2. Steroid withdrawal symptoms (which should be self limited and improve if given enough time, though it may take very slow prednisone tapering).
3. Adrenal insufficiency (because the dose of prednisone is lower than what your body needs to support electrolyte and fluid management).
Good luck on your journey