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

Hello @chris1466, I thought you might like to know Mayo Clinic already has a clinical trial -- Low Dose Naltrexone to Improve Physical Health in Patients With Vasculitis: https://www.mayo.edu/research/clinical-trials/cls-20438025. There is also other discussions here on Connect that you and others may want to join in and share your experience and how it's helped you.

Low Dose Naltrexone and Neuropathy: https://connect.mayoclinic.org/discussion/low-dose-naltrexone-and-neuropathy/
Anyone with experience using Low Dose Naltrexone?: https://connect.mayoclinic.org/discussion/anyone-with-experience-using-low-dose-naltrexone/
Low-Dose Naltrexone for Chronic Pain: https://connect.mayoclinic.org/discussion/low-dose-naltrexone-for-chronic-pain/

@chris1466 Does your doctor recommend trying to eventually taper off of LDN when the PMR is controlled and in remission?

I know the feeling about tapering too quickly. I was accustomed to fast tapers before PMR was diagnosed. I quickly found out that didn't work. Are you taking Actemra for GCA? I don't find too many people who get prescribed Actemra for PMR.

I was able to completely taper off prednisone twice. Both times from the 10-15 mg range to 0 mg in 6 months. It could have been faster except for a concern about adrenal function. Unfortunately, a flare of uveitis occurred after the first time and I had to go back to 60 mg of prednisone. Humira was tried for uveitis but it didn't seem to work well for PMR. In consultation with my rheumatologist and ophthalmologist --- I decided to restart Actemra. My doctors thought a weekly injection instead of every 2 weeks might work better to control both PMR and uveitis.

I can't say that I want to take Actemra forever but so far I have no side effects that I'm aware off. I had a long litany of side effects from prednisone. Overall, I tolerated prednisone reasonably well but my overall well being had a downward trend. Also, i can't say prednisone induced a remission of PMR. So far, things seem much better on Actemra.

I have both but the GCA was only discovered incidently, when searching for a reason for such high inflammation. So it sounds as though it's important to remain on actemra post pred. Thanks again for your story, I found it most interesting.

I don't really know how long I will remain on Actemra. I have had a total of 32 injections over the last 8 months. I told my rheumatologist during a phone visit in June that I would be willing to increase the interval between injections. The only response was that we will discuss that in six months...so I assume in December I may go to injections every two weeks. If you ask me, I don't think my rheumatologist has a plan. I feel much better than anytime in the past 12 years ... I don't want to rock the boat but I really do think I would be fine doing injections every two weeks.

I was hoping to get someone's experience with tapering off Actemra. It was recently FDA approved for GCA but not PMR yet. I'm familiar with TNF inhibitors for inflammatory arthritis and those people just stay on a biologic until they stop working and then they usually switch to a different biologic.

Yes, it would be interesting to hear about an actemra taper. When I was being shown how to administer it, the nurse told me that her clients are all taking it (by infusion) for RA, and would be on it for life. Infusions are about to be ceased and they have to move to injections and they are not happy.

Hi Ethan, This is not my first rodeo with PMR but it has been 7 years. I need some support from the people who understand this condition and am looking forward to other peoples intake and experiences.

Hello @carol1949, Welcome to Connect. I've had two occurrences of PMR but it is currently in remission (for which I am very greatful!). There are many of us members who follow this discussion and are available to share their experiences with PMR. You can also scroll through the discussion and it may help to go to the top of the discussion and select Newest to Oldest at the bottom right of the discussion window. That way you will see the latest member posts first.

Did your PMR become active again recently? What treatment is being used?

I have not yet officially been diagnosed with polymyalgia rheumatica but will see a rheumatologist at the Mayo Clinic - Rochester upon referral on August 18th. My journey thus far is as follows: On February 27, 20320 I underwent a bilateral mastectomy for Ductal carcinoma in situ with clean lymph nodes. Mid-March I was seen by a medical oncologist who prescribed Anastrozole. He pointed out two things: that I would be taking this medication for 5 years and that one of the side effects is shoulder pain. I took the medication for 2 months and shoulder pain developed to the point that I could not raise my arms and had difficulty rising from a sitting position. I contacted the cancer center, learned that the prescribing oncologist was no longer there and was told that this medication SHOULD NOT HAVE BEEN PRESCRIBED SINCE IT IS USED TO HELP PREVENT THE RECURRENCE OF CANCER IN BREAST TISSUE. The thing is, I have no breast tissue. I was told to stop the medication cold turkey which I did. The symptoms worsened, I was seen at urgent care and told that I was probably having side effects from medication withdrawal, went again because the symptoms were even worse and then was told that PMR was probably what I was dealing with. Prednisone at 10 mg, was prescribed (which helped) and I was referred.

About 3 months have now passed and I am dealing with the symptoms I am reading about and use a walking stick because my balance is poor
and my legs are weak. My questions are has anyone else experienced a PMR "trigger" due to a particular medication and what might I expect at my first visit.

Thank you.....

Hello Susan. I have been on a very similar trip to yours. I have had breast cancer and after having chemo, a lumpectomy and radiation I was put on Anestrozole. Shortly after that I had a colonoscopy and was given Cipro as I have diverticulitis. Two days after taking the Cipro I developed the shoulder pain and f elt like I had been hit by a truck, I was not able to get out of bed in the morning due to aches and pains all over. I went to three different doctors to get diagnosed including my oncologist who told me to stop taking the Anestrozole for 2 weeks, before they diagnosed PMR. I was immediately put on 10 mgs. of Prednisone and the pain stopped straight away. I am now back on Anestrozole, down to 2 mgs from 10 of Pednisone, and apart from still getting fatigued and dizzy am doing fine. I do think my "trigger" was the Cipro, but that's just my opinion. The fact that you don't have breast tissue is an issue for your doctor to answer.