New PMR patient, wondering if mornings will become pain free someday

@jrp11948 and @321design -- good morning -- may I ask - are you in a Groundhog Day loop ? each morning you wake up with stiffness , take your Prednisone, feel a little better and then start all over again the next morning? That is what I wanted to put an end to --and so my dose was increased to 30mg from 20mg ( the rheumatologist's plan) with a split dose- resulted in the miraculous relief for the PMR morning pain and stiffness after experiencing a terrible flare up.

You might be interested to read the descriptions of PMR pain and stiffness in the attached paper- I know I did !

And - the description of the "classes" of patients and and how they respond to Prednisone is in this Muller paper ( 2020) with a follow up in 2022. The concern is predicting who will relapse ....... the graphs are difficult to interpret at first. The tapering of prednisone can be gleaned from the table(s), it was quite slow in this study according to my calculations.

My journey started a year ago- ( shout out to all the PMR connections I have "met" here) - I have tapered to 3mg/day - woo hoo !! knock wood - I think I am a cluster 4 patient : Rapid and sustained recovery

In addition, this thread started long ago , so I can't quite tell when you each were Dx w PMR - have you looked at this site : https://www.pmrandil6.com ?? scroll over to the resources Tab and down and find the videos.

@jrp11948 I had to look up Plaquenil : this is from the ACR site : Hydroxychloroquine (Plaquenil) is a disease-modifying anti-rheumatic drug (DMARD). It can decrease the pain and swelling of arthritis which can prevent joint damage leading to long-term disability. Hydroxychloroquine is in a class of medications that was first used to prevent and treat malaria but today is the standard drug in lupus. It can be used in many other autoimmune diseases. It is not fully clear of its mechanism of action, but the current thought is that it interferes with communication in the immune system.

Hello @321design I tagged you in a different comment above - when was your last blood work done ?
"I know the prednisone taken in a large enough dose* could eliminate all my pain most likely"
* in a large enough dose INITIALLY ? - is that what you are asking ?

Kinda Ground Hog ish. Some days are better than others, but I feel fortunate that I’m only 3months in to this. My doc says I’m in remission,but I’m not so sure. My blood work is basically back to where it was before the onset. The two weeks before I was diagnosed, was pure hell. Couldn’t Get up in the morning, couldn’t comb my hair or get dressed, walked like I was 100. It would ease in the afternoon. With Prednisone it was almost instantaneous relief and only on 10 mg. After a week I had to jump it to 15, I’m now down to 9mg. But, and this is huge for me, Prequenil. We added that about3 weeks ago and the pain in the morning is minimal. It takes a while to build up in the system, where’s prednisone is only good for a day. I forgot the Plaquenil on day and hurt all day, not going to do that again.
I talked to one lady that has RA and she’s been on it for 15 years! My doc says it the safest thing out there, little side effects, but docs don’t use it much anymore because the drug companies are pushing the newer more expensive stuff.
If there is one side effect that I’ve noticed is the muscle wasting. I’m weaker and any weight training I do doesn’t seem to make much difference. So I’m still doing it, because I’m such a macho 76 year old, haha, mainly psychological.
So good luck to you, my Primary Care Physician says it’s a 1 1/2 to 2 year course and it will burn itself out. However on this site there are individuals that are going on 10 years or more. We’re certainly all different!

"prednisone is only good for a day" -- there have been some discussions about the half life of Prednisone .

" the drug companies are pushing the newer more expensive stuff'- at least I haven't seen a TV commercial yet for Kevzara and PMR ! LOL

Good luck to you too !!

Plaquenil can help steroid sparing with the lower prednisone dose. Wouldn’t hurt to get an eye exam and
bone density check in the event you are on meds long term for symptoms. Hope it remits soone.

Thanks nyxgirl. I have had blood work done about 6 weeks ago and my numbers were within the normal range or slightly above. Because of that my rheumatologist had me taper the dosage of pred. to 5mg. But since then stiffness and pain returned. We tried 7.5mg/day (5 in the A.M. and 2.5 P.M.) but still had pain so now I'm at 10 (5 and 5) as of a few days ago and I'm pain free more or less. I have an appointment May 1 where we will review.

@tedmbrady
My husband developed PMR 5/2023 and then GCA (giant cell arteritis) in 2/2024. It's been a ride. He began on 30 mg prednisone for his PMR and tapered down to 12.5 mg before developing GCA. His was a bad case that needed 1200 mg infusions of steroids for three days followed by 80 mg prednisone. They have been tapering him and he's now at 50 mg. He's also getting Actemra injections weekly that should help taper and possibly eliminate prednisone.

I read the other day that someone received Actemra for PMR. According to our rheumatologist, it's safer, less side-effects and can be quickly stopped unlike prednisone. She said he could be on it for 2-3 years or for life, she's not sure, but he had a really bad treatment-resistant case.

One thing that worked for him as far as having pain when he woke up was splitting the dose. Something you could discuss with your doc. For instance, now that he's on 50 mg she's having him take 30 in the am with breakfast and 20 in the pm with dinner. When he was on 80, he took 50/30, when he was on 70 he took 40/30. When he was on lower doses, like the 12.5, he would take 7.5 in the morning and 5 at night. That is the only way for him to be pain free. Totally pain free. But, if he takes it once a day, he has pain for hours after waking up.

I hope this helps.

"I read the other day that someone received Actemra for PMR. According to our rheumatologist, it's safer, less side-effects and can be quickly stopped unlike prednisone."

My first dose of Actemra was January 1st, 2019 and it was used for "refractory PMR." I haven't ever been diagnosed with GCA but I was diagnosed with PMR in 2007. I had 12 years of PMR before Actemra was tried. Actemra is not FDA approved for PMR but my rheumatologist sought a waiver to get it approved for me. I wish a waiver was sought much sooner because I was able to taper off prednisone in 1 year after Actemra was started. My prednisone doses for refractory PMR averaged approximately 25 mg for 12 years.

I have been on Actemra ever since except for a couple of "interuptions." One interruption was because of a suppy chain problem during Covid. Whenever Actemra is stopped my symptoms have returned. I now do monthly infusions but I have gone 5 weeks between infusions. I'm currently going for 6 weeks between infusions because of a tranAtlantic cruise with some time spent in Europe before returning to the States. I wouldn't have dreamed of doing this trip before Actemra was tried.

All my mornings are without pain as long as I am on Actemra. I did go through a stage where I lost all hope of ever getting off prednisone. That was worst I ever felt during the whole ordeal so never, ever lose hope!

I haven't had any serious side effects from Actemra. Besides being off Prednisone, I'm also off many of the medications I was on that were primarily used to treat prednisone side effects.

Kevzara is a similar medication that is now FDA approved for PMR. Kevzara and Actemra are both IL-6 receptor blockers.

@dadcue
I'm not sure if I've responded to this before but in case I haven't. Thank you for sharing. I can't believe how long you've had this and been on Prednisone. And so glad they put you on Actemra for PMR. I think anyone who has PMR for a long time who can't get off Prednisone should be given a chance with Actemra. Maybe the Kevzara will work great for people with PMR. I sure hope so. We are definitely noticing improvements since he's been on Actemra. He's able to taper (down from 80 mg to 50 mg now - his doctor checks his levels every two weeks and since they've been great, she reduces him another 10.) It's slow going, and at some point she will start reducing 5 mg instead of 10. We'll get there. One good thing is he has no pain. He's jittery and can't sleep more than 4-5 hours a night but we think that's the prednisone. Fingers crossed that as he tapers the jitteriness and lack of sleep will improve.

When are you going on the cruise? Can they give you the Actemra injection that you can give yourself if needed? My husband is on weekly shots that I give him. Just a thought.

Hello, you could try splitting your dose three quarters in the morning with breakfast and one quarter at night about 9pm. This evening dose would help alleviate the inflammation that arrives between four and five am.