Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

I had two neck injections for the arm/hand pain and a back injection for the hip pain. Of course since they are steroids they helped so everyone thought that was the problem. But the pain came back and moved around. About the 5th referral it was thought maybe PMR. But the blood work was negative so I was told I had arthritis, take pain meds, and get on with my life. For three years I have lived off and on with huge ibuprofen doses which help me quite a bit. After reading this blog for awhile and the steroid issues I have decided to keep on as I am. I am pretty disinchanted with doctors, to say the least.

Yes, I have been taking prednisone for one year and am on 3 mg now. I want to put the Voltaren cream on my shoulders, but I called Voltaren, and they said it doesn't work on my shoulders. From what you wrote, it does not sound like Voltaren cream helps with PMR pain.

For only having PMR for one year, it sounds like you are doing pretty good with the tapering. You might find this discussion helpful as others have shared what helps them.
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

Watch the maximum suggested doses of NSAIDS for side effects as well. Have you been retested at intervals for
CRP and SED rate? Don’t give up on visits to check your
cardiac risk profile and kidney function. Have you tried
a university med center specialty clinic. Low dose steroids are manageable if you do have PMR. I am a believer in
the anti-inflammatory diet lifestyle and a routine of stretching and walking if you are able.

I use Multiprofen CC Plus. It contains amitriptoline, baclofen, ketoprofen, lidocaine, pregabalin. It’s a compounded cream, made in Canada, a prescription is required. m-line pharmacy.ca. Some days it works well, mild pain. I find if the pain is deep it’s not as effective.

Thank you for your thoughts. I have routine blood work for a general watch. I've had 3 SED etc over the space of the 3 years, always normal. But I know after following this group that I have PMR. I am very much better and don't want to start with a new doctor and steroids at this point if I can help it. I can now do most everything I want, albeit with some pain, but tolerable. Including exercise and hopefully back on my horse. We'll see about that last one. Best of luck!

@vjs May I ask did you have the hallmarks of PMR - Bilateral stiffness in shoulders and hips ? Sudden onset , Pain is worse in morning , after waking ( what I call the "Ground Hog Day" feeling - think of Bill Murray waking up over and over again in same situation. It is 2023! Pre-Dx, when I googled bilateral pain "polymyalgia rheumatica popped up! I was already familiar with the term when I first saw PCP. Please look at the info in pmrandyou.com and PMRandIL6.com. NASAIDs are not going to help, there is immune cell-mediated pathway that needs blocking. The conversations on this site are very helpful and others have had uncannily similar experiences with Prednisone dosing and others are trying KEVZARA. European clinicians
/researchers seem to have more interest in "fast tracking" PMR Dx. I do not (yet) know who are the Key Opinion Leaders in the USA, besides Dr Callabrese of the Clevland Clinic.

Yes, I had the bilateral pain for quite a while. It started with my left upper body, and hips. It moved to both sides and became so bad I was struggling to walk. I had been to the dr, I’m 70, so I think I was perceived as having old lady pains! Finally after indicating that the pain has become too much, my dr suggested the ESR test. Following a referral to an internist I was diagnosed with PMR. CRP elevated as well.

@nyxygirl

My rheumatologist referenced the GiACTA study for GCA when he requested ACTEMRA (tocilizumab) for me in order to treat PMR.

Actemra is another IL-6 receptor blocker similar to KEVZARA.

The following was documented in my medical records:

Criteria for tocilizumab in Giant Cell Arteritis (GCA) as listed below, most notably the inability to taper steroids. It is believed that PMR is mediated by IL-6 mimicking GCA. PMR therefore would seem most likely to respond to IL-6 blockade with Tocilizumab. Approved for use pending appropriate labs have been obtained. Dosage and administration should follow recommendations for treatment for GCA.

The request is approved:
- A documented therapeutic failure of the preferred formulary alternative(s) exists.

A link to the GiACTA Study:
https://www.nejm.org/doi/full/10.1056/nejmoa1613849
Key Opinion Leader in USA for GCA:
John Stone, MD, MPH
Director Clinical Rheumatology
Massachusetts General Hospital

@dadcue Thank you for that as my doctors are at MGH!