PMR Dosages and Managing Symptoms

@valerie6062 Yes, we certainly do, Valerie. It completely changed my life too. So, you have the old moon face...but no wrinkles, I bet. I put on quite a bit of weight (understatement) and have lost 90 pounds..now I have some wrinkles.
It is quite a journey, but I'm so thankful you were diagnosed, and you have your eyesight! I agree with you and so does my rheumatologist, that my neuropathy, myopathy etc. are due to 3 years of pred. But don't let it affect your spirit. I've managed to use my energy only for things I enjoy...it is sort of like being an heiress without the money! Doing something I love, different for all people, keeps your sense of purpose. I used to crochet, knit, and quilt...that is out now because I was not properly diagnosed. But my days are full and I still paint watercolors, listen to books and talk to friends. Thank heaven for Zoom. This Thursday, I am leaving on a trip to Nova Scotia to see my granddaughter graduate from high school. It will be slow-paced and such a pleasure and joy to see them. Then I will visit friends in Maine, again slow-paced but joyful. I'll be back in three weeks, so please keep in touch with me. It is a difficult journey made easier by not walking alone and keeping positive. You are brave. I was only diagnosed after losing sight in one eye, but I can see fine enough!
My only advice is to taper slowly. I'm on 3mg per day now and will reduce it by another half milligram on my return. I'm also on an Actemra pen injection weekly and have been doing that for three years. Are you in the States? At this stage and lower, you will also find you are fatigued at times; that is when you stop and rest. Listen to your body.
My best to you...Marilyn💞

That’s great that you found someone to help and are comfortable with the adjustments. We took my dad to Immediate Care, and they thought we were crazy. So did his PCP. But my aunt is a general doctor/internist and she said she’s treated many cases of PMR. She also lives in a small town, so I guess a lot depends on if the provider is aware of it.

That’s kinda frustrating about it being able to combine different milligrams. If I’d easier to combine them…we had to try to find a really good pill cutter. I wonder if your insurance would allow you to get a bunch of pills in a smaller number of milligrams—like all 5s or 2.5s. I take a 112.5 mg of a different medication, and my doctor writes the script for me to take “5, 25 mg tablets,” but I combine 4 and a half tablets to get to my dose. She did it that way so we could titrate it slowly and it did go through. It can sometimes drive me crazy counting them all out though. Take care, and hope things keep getting better.

Good idea, perhaps Medicare would approve the different mg if it all added up to the dosage for the month. I'll suggest that to my doctor.
My sister had a pill cutter for tiny heart pills and I remember what a time she had with it. I bought a pack of single edge razors and cut them while sitting on a napkin (the pill, not me... ha). It works perfectly.
Take care as well and things will get better.

I agree. The entire prednisone journey is confusing… you have to try and see what works for you …understanding that decreases too quickly can set you back a while… I work with prednisone 5mg cutting in half and 1 mg which can also be cut in half…reduced too quickly via doctors direction…they forgot I am not the standard go by the book patient and now regulate on my own, eating as much calcium as I can, and hope for the best… just had 3 great pain free days to wake up with pain/stiffness throughout body… every day is a new challenge! But I do hear if success stories so all is possible!

Hi @tigre24, I would check with your doctor or rheumatologist and get a prescription for 2.5 mg prednisone tablets. Then you won't have to cut the 5 mgs in half. Made my tapering much easier.

Great suggestion! Thanks!

Any suggestions on triggers? Foods, activity… Seems like symptoms come and go without any warning… is it always just a wait, see, and hope for the best?

Hi @tigre24 - This might help.

--- Polymyalgia rheumatica diet: Foods to eat and avoid: https://www.medicalnewstoday.com/articles/321683

Sugar for me. Too much triggers a flare. The biggest trigger? Stress.

Stress, so true.
What helps, veggies, light stretching, less processed foods. I find that difficult because I don't like to spend too much time fuffing with food. I'm trying to do better. I've cut down on coffee, one in the morning and ice tea early afternoon.