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

I've had issues reducing below 15 mg daily. I still have occassional mornings when I hurt but not too many. I'll see my rheumy next month and discuss how to reduce. In the meantime, I've started using a Pilates bar with 10 lb. resistance bands (to be increased as I get more fit) 3X per week. Every a.m., I do stretches or Qigong. Youtube is great for routines for these. I'm optimistic that these exercises will help me cope better.

Ditto! that is exactly why I want off this Prednisone! I have the same skin side effects including profuse sweating and feeling hot all the time, all in just over 2 months. What is it going to be like after 12 months! I certainly understand your reluctance to try Methotrexate, there are alot of side effects but I am not familiar enough to comment. I often wonder if PMR would go away on its own, without any meds....

I would talk to your rheumatologist about this before you try it, but: By accident I forgot to take my prednisone one morning and ended up taking it that night. The next morning I had much less sciatica pain and stiffness. That night I decided to try that again and the next morning, again, much less pain. Last night I reduced my dose from 1 ¼ one more time to just 1mg. This morning no sciatica pain at all and minimum stiffness. My guess is that the prednisone allows me to relax my muscles more while sleeping. Keeping my fingers crossed that this will keep working.

So, as I spent one full week on 25mg (from 20mg earlier) I ping'd my Rheumatologist and mentioned that, at 25mg, the "camp fire" was not out...smoldering and somewhat inconsequential (almost pain-free) but NOT yet pain free. He asked me to up it to 30 yesterday, so I did. Woke up this morning with almost zero (almost) pain. Hoping tmrw is pain-free and then we go 2 weeks at 30 (and then begin weening). Wish me luck. Stay tuned.
Ted

I was dx with PMR in March 2023. I saw my internist and rheumatologist for the persistent pain. Before being dx, i had steroid shots in my shoulders with relief for only a few days. My hips were sore as well and was scheduled for a steroid hip injection. I saw the chiropractor regularly without relief of pain. They prescribed different doses of Prednisone and Prednisolene.
In May was hospitalized with double pneumonia. While in the hospital I was dx with MAI and bronchiectasis. I was referred to ID, pulmonary, cardiology, eye, hearing etc. i needed to start on the Big 3 drug treatment .
I have been on this treatment since June 2023 once I was cleared and had the baselines in place to start this regimen.
My problem is not the MAI treatment, it is the pain I am never out of from the PMR. I wish I only had it in the morning. It is quite debilitating . I had to stop working. My job was physical . I loved my job and hope to get back to it. I was very active worked and took care of my grandkids! This is very difficult to adjust too!
They suggested I stop the MAI treatment to treat the PMR pain. My pain was still present even before I started the MAI treatment. I have been on 50 mg of prednisolene with ridiculous pain. They cannot keep me on this high dose either.
I don’t want to stop the MAI treatment to have an additional setback. I go for the sputum check at the end of October.
This has been extremely tough but glad to have this site to follow up on the experience of others.
I look forward to having a day of being pain free.

Hi @lpilla, Welcome to Connect. So sorry to hear you have other conditions making the treatment difficult. I know that can't be easy for you. My PMR is in remission now but hopefully others that have experience similar to yours can share with you. There are many MAI related discussions that might also be helpful. I did a search using MAI at the top of the Connect window. You might want to look through the discussions and comments listed in the results to see if any might be helpful - https://connect.mayoclinic.org/search/discussions/?search=MAI.

Also, there are may other PMR discussions in the Polymyalgia Rheumatica (PMR) Support Group here that might be helpful - https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.

Have your doctors suggested any alternative treatment for the PMR pain?

No recommendations for other meds due to side effects! Uplifting to read you are in remission. I look forward to saying that too!
Thanks for all your info to gain more insight with this .

I think you can be pain free on 20mg if you split the dose. 20 in the morning left me in agony at 2am! I was pain free taking the other dose as late as I could stay up. I did a 15/5 split. It did make me wake up early for a while but I didn't mind. Have coffee at 3am and start cleaning closets out, lol.
Now on 13 and still had some bad days BUT I think starting Low Dose Naltrexone has made a difference in it, just this week! I got it through a local pain clinic, and a compounding pharmacy. I live in the middle of nowhere and was very surprised that I was able to get it locally! On day four of 3mg and feeling the inflammation and pain subside daily. I'm very surprised and encouraged! It's about $50/month, insurance doesn't cover it.

I agree, split dose worked for me too. I was only 9 days into this new diagnosis, on 20 mg of Prednisone, when I started to split. Like you, I would be startled awake with return of the pain, in every joint, at 2am. I would suffer into the morning, feeling like I did before I ever started Prednisone, then it would take 2 hrs after taking my morning dose to feel normal again. I thought, this is not right! I started researching Prednisone, learned it only stays in your system like 16hrs, learned other people on here were splitting the dose and thought, that makes sense, (like antibiotics required to be in your system around the clock to prevent breakthrough infection). I said: why don't I try that also. Two months later, I am still pain free in the night, the morning and all day. and never slept so well. I did 10/10 split, then 10/5 split, then 5/5 split. I am starting my descent to 9mg this week 5/4, although, I am considering working my way back to taking all of the 9 @ once in the am, based on what others are saying about how their Rheumatologists feel about 1x daily dose only. Plus, I am curious if the pain/inflammation is still there, the true test...the 2 am pain.
I am happy the low dose Naltrexone is working for you. That drug seems like another miracle drug like Prednisone. Although, initially intended as an antagonist to treat opioid and alcohol dependence, it was discovered to be effective in treating multiple conditons, like chronic pain syndromes, inflammation, immune system dysfunctions, anxiety, depression and so many more...that is amazing.
Everybody has to find their own peace. Everyone is different in their experiences with PMR. For me, I am on a personal quest to get off Prednisone, and any drug for that matter. I have been lucky in life so far, for being almost 70 (ouch). I am on a thyroid replacement, for life, and a med for gerd, which I am also trying to get off of, lol. That's it! And, I don't want anymore! Haha...I can only hope!
Keep us posted on how that Naltrexone works to keep the pain and inflammation away as you continue to wean your prednisone. I wonder if anyone else has experiences with Naltrexone-hmmm, that is probably in another discusion. Have a good day....

If you continue to have more than minor stiffness and discomfort in the morning while on Prednisone, let your rheumatologist know. They should be able to help control this. I noticed a dramatic difference within 3 days of starting Prednisone at 20mg. I had some challenges when I was tapering off, but was fairly comfortable and it was nothing like the pain I had experienced prior to taking the meds.