How to address PMR pain while decreasing prednisone

Thanks for this info! That’s what I’ve been wondering…if a little pain is ok.

Hi all i am loving this support network and wanted to ask a question, my symptoms increase about 3pm each day by bedtime my movement is difficult and exhaustion is real. My question is if you wake in the morning feeling OK but experience worsening symptoms in the afternoon evening would a CRP blood test show higher results in the evening versus the morning? Not sure if anyone knows but i normally have my blood tests first thing in the morning and the CRP level does not match the symptoms i feel. Thanks in advance

Hi @deniseinca, I think you are probably right, I'm not sure anyone can answer your question on the CRP levels morning vs evenings. Can you identify any activity or foods that could trigger worsening symptoms in the afternoon or do you feel worse even on days with not much activity? From what I've read elevated levels of CRP can indicate any type of infection or inflammatory condition. -- https://www.healthline.com/health/rheumatoid-arthritis-crp-levels

Hi John Thanks for replying I am low level active in the mornings we live in a split level home so stairs are a reality but i do not overdo anything day to day. I think the onset is when i finally stop, once i have relaxed on the couch for about 1/2 hr i become exhausted and difficulty and pain getting back up and moving, it is quite perplexing as I am pretty OK in the mornings. I was not sure if anyone could answer the CRP question but i will try having night time bloods next week and see what happens .

Hi Denise....I haven't had this type of problem. I do notice less pain about an hour after taking the prednisone. We have two sets of stairs and go up/down them all day and evening.. Hope it gets better soon! June

Hi @deniseinca - that's a little strange because PMR symptoms are generally worse in the morning and ease up a bit as the day progresses. You could try taking your next CRP in the afternoon to see if it's higher. There are some people on this site who split their dosage of prednisone in half - morning and late afternoon or evening (with food, of course). Maybe that would work for you.

I asked my doctor this exact question last time I saw him a couple weeks ago. Should being 100% pain free be the goal and he said yes that is the goal. I see him next week and want to ask again as I am maybe around a 1 pain level vs. a 0. So will he have me up my dose? We shall see.

Hi! I have found eating foods/beverages with any level of sugar and/or high fructose corn syrup causes pain to increase in me. They are inflamants big time. Read the labels and start cutting them out of your diet! It is not easy!! I am working on it and have found I am in less pain. I started with 20mg n 2017. I am finally down to 1mg/day. Pain level is about a 3. I eat no high fructose corn syrups(soda pop is easy to cut on for me). I have cut out desserts(I love dessert). I read labels.

Has anyone tried LDN ?

I was having similar issue with 1
20 mg Prednisone and that’s why I took it at dinner time but my doctor said that’s wrong. But switching to the AM my symptoms got worse at night again. so he switched me to Methylpredisolone instead of Prednisone and it works like a charm. I am like a 0 to 1 pain level on 16mg. he said I am a very rare type that does not do as well on Prednisone so this may not be an approach for everyone. It will be a bit challenging tapering though because Methylpredisolone does not come in the small 1mg doses.