Anyone having any luck with treating PMR without any specific medicati

That is a good question!

I think most rheumatologists are reluctant to start elderly people on prednisone for reasons related to the side effects. The problem with PMR is that historically not many alternatives existed. It was prednisone by default because of the lack of a better option.

The potential for complications from the "long term" use of prednisone is true at any age so it isn't just a risk for the elderly. Treating PMR with prednisone is a long term proposition as my rheumatologist said at the start. She said I would need Prednisone for a couple of years. A couple of years can easily turn into 5 years ... 10 years or longer for many PMR sufferers who just happen to be elderly. I have often wondered how many people diagnosed with PMR end up taking Prednisone for the rest of their life???

In my opinion, there needs to be a better alternative to the long term treatment with prednisone for PMR especially for the elderly. The medical community is well aware of this problem. They aren't ignorant for wanting us to taper off prednisone as soon as possible and to take the lowest effective dose.

Technically ... I still have PMR according to my rheumatologist. My rheumatologist and I are very happy that I'm finally off Prednisone after 12 years. My treatment with Actemra has achieved remission of PMR and is also preventing PMR relapses which was something Prednisone didn't do so well in my case. It had nothing to do with how I tapered.

Prednisone is good for the rapid relief of pain while we wait for PMR to go into remission. It can be a long wait for remission to occur. The trade-off for rapid pain relief from Prednisone is the significant potential side effects, particularly with long-term use.

My chart at the rheumatologist's is interesting. Under problems, it lists these:

1. GCA
2. Long term use of corticosteroids (prednisone)
3. Use of a high risk medication (Actemra)

I'm off prednisone now, so I'm down to 2 major problems.

When my symptoms of PMR first slammed me, I tried treating myself with ibuprofen. 600 mg is less than the daily allowed dose over the counter, so I know I took more than that. It had no effect on me. My first doctor put me on meloxicam, which is a stronger nsaid. It did have some effect, but I was still nonfunctional. It was not until I was correctly diagnosed and given prednisone that the symptoms were completely chased away. Now everyone is different, so I have not doubt that some people can be treated with ibuprofen, but I doubt they have a serious case of PMR, in my opinion.

I went 4 months between the onset of PMR and when I was able to see a rheumatologist and get on prednisone. I self-medicated with 800 mg of ibuprofen a day. I would say it reduced symptoms 10-20%, not a significant amount, but I was desperate. When I saw the rheumie, he commented that my ESR test was high, but probably would have been higher without the ibuprofen, so he admitted it probably had some effect. After I took my first dose of 20 mg of prednisone I could feel it working within 6 hours. At my 1 week followup I reported zero pain. In my experience ibuprofen is not an effective treatment for PMR.

Mine is similar to yours.

The first entry speaks volumes for what was considered to be my problem.

1) Encounter for long-term (current) use of steroids (09/09/2008)

More got added later:
2) Reactive inflammatory arthritis Dx in 1990s (10/26/2009)
3) Polymyalgia rheumatica Diagnosed 01/2009- quiescent on Prednisone taper. Recurrent. Intolerant of methotrexate 10/26/2009
4) Uveitis - Once per year since 1990's (05/24/2010)
5) Trigeminal neuralgia (11/24/2010)

Then a long list of things attributed to possible prednisone side effects:

Tendon rupture, Ventricular hypertrophy, Essential hypertension, Neuropathy, Mixed hyperlipidemia, Glucose intolerance. Borderline Glaucoma with ocular hypertension, Cataracts

Then the big event happened:
Extensive, multiple and bilateral pulmonary embolisms (unprovoked)
Long-term (current) use of anticoagulants
Indication for Warfarin: Pulmonary Embolism (Dx: 12/6/12)
Duration of Warfarin Therapy: Indefinite (Lifelong)

Just so they wouldn't forget I guess the following is listed:
Long term systemic steroid user (04/15/2019)

Lastly;
Long-term current use of tocilizumab (06/20/2019)
-----------------
Since I stopped Prednisone, I have also stopped numerous medications for hypertension, cholesterol, glaucoma and even warfarin was discontinued during the years after Actemra was started

I went 4 months between the onset of PMR and when I was able to see a rheumatologist and get on prednisone. I self-medicated with 800 mg of ibuprofen a day. I would say it reduced symptoms 10-20%, not a significant amount, but I was desperate. When I saw the rheumie, he commented that my ESR test was high, but probably would have been higher without the ibuprofen, so he admitted it probably had some effect. After I took my first dose of 20 mg of prednisone I could feel it working within 6 hours. At my 1 week followup I reported zero pain. In my experience ibuprofen is not an effective treatment for PMR.

My experience was similar to yours. I self-medicated with acetaminophen to treat PMR and later PMR and GCA. I got a little relief, but not much. When I went to the emergency room for vision problems for GCA, I got 3 daily infusions of 1000 mg of methyl-prednisolone. I recovered immediately starting with the first infusion.I was also bouncing off the walls from the extremely high dose of steroids. And for two weeks afterward I had a hunger like I had never known before. There was no way I could get enough to eat during that time.

Thank you, it is anxiety producing for me not having a diagnosis and dealing with daily pain and soreness. I plan to try the alieve liquid Tylenol combination. Please let me hear how things progress for you.

Hi there again. I’m just giving you a little update today.
Yesterday I got my appointment for an MRI on sept 5.
I have been doing a ton of reading on what else could cause the same symptoms as pmr.
In the past 10 years I was diagnosed with osteoporosis, fractured my L1 and L2 as well as a very bad low back sprain in May of this year.
What I found was that spinal compression can have pretty much the same symptoms as pmr. I have much pain sitting because of my lower back pain.
It will be interesting what my MRI shows.

Thank you for sharing that information. Please let me hear your MRI results. I have an MRI on September 2, and an EMG test on the 12th.