PMR and MGUS/SSM/MM multiple myeloma

Hello:) Your question caught my attention. Since January O am being treated by NP for PMR due to sed rate of 90 and CRP elevated, high serum proteins and free light chains, and Morphea scleroderma with low dose prednisone. Rhuematologist feels is not PMR, instead it is RA, and I began methotrexate self injection. Lab work continues to have high serum protein, kappa and lambda free light chains, gamma globulin, ANA positive speckled pattern, IgA, IgE, etc. Albumin. No M spike . So next stop this week is to a hematologist/ oncologist to rule out multiple myeloma, MGUS, and the other ones you listed.
If I may ask, what is your diagnosis -and how they treating your diseases?

In summer of 2023 I was dealing with a lot of upper back pain. Finally I was diagnosed with MGUS (+M spike, but normal light chain ratio). On MRI I was found to have a compression fracture of thoracic 6th vertebrae - cause unknown, I have osteopenia but not osteoporosis on DEXA. It has taken 10 months to heal the vertebral fracture, but now I fear I may have another in my lower spine, partially due to a recent incident where I was assisting an individual who had fallen and I felt sharp pain in my back. It is now presenting just the same way the thoracic fracture had in the past.
Back in January 2024 I awoke and couldn't walk across a room with pain primarily in my pelvis. It was diagnosed as PMR and responded to Prednisone 20 mg. I am tapering off the Prednisone and now at 12.5mg but it is complicated by the recent incident with my lower back. I will see a rheumatologist and an oncologist in early June to evaluate condition, along with new labs. Meanwhile I do my best to address nutrition (whole food, anti-inflammatory diet), stress (meditative and mind-body pain practice), exercise (walking 2-3 mi/day, moderate weight training), relationships (faith, family, love, and public health education on brain health), sleep (9p-5a). Sleep has been an issue with the back pain and PMR. I wake up in the middle of the night with pain and I am stiff and sore in the morning until I move around for about an hour.
Hope that helps! Best to you...

I was diagnosed with MGUS 3 years ago, before my PMR diagnosis last year. My oncologist is upping my check ups and labs to every six months because I am on Kevzara since last October. I am not on prednisone now, but was last year. I don’t think they are related but will ask at my next oncology appointment.

It is hard to know but sometimes I wonder if PMR wasn’t an untoward complication of being on Hydroxychloroquine, which I was being prescribed for na-SpA. I wish there was a website where the public could record subsequent conditions while taking medication.

I simply wanted to post here because you are the first person I have come across that has had compression fractures and has also been diagnosed with MGUS. I also was slightly above osteopenia level on DEXA, not quite there yet, so I began my quest to find out why the compression fractures keep happening to me, none of my 3 (or more) were due to any trauma, just ordinary activity. Super painful, and they can take a long time to heal. Very much interferes in daily life, especially for the first 2 weeks or so, and since learning that that was what happened the first time, I have known the following two times that was what had occurred.

This is the first I have heard of PMR, so far no Dr has thought this a possibility. Interesting. I do have many of the symptoms, but this still does not indicate why my spine continues to fracture or compress. I had no treatment other than some chiropractic treatment during some of the times of fractures - and I wouldn't really recommend that.

Sometimes it is helpful just to know you are not alone, thanks for sharing your journey.

When I asked my oncology nurse practitioner about the relationship of vertebral compression fractures and MGUS she shrugged her shoulders and basically said there was no correlation. Yet the International Myeloma Foundation has a brochure on “Myeloma-Induced Vertebral Compression Fractures”. I think there is more than we are aware of on the spectrum of this illness. Bottom line is how do you feel. It seemed like it took a year for my thoracic fracture to heal, mostly because I could not immobilize my upper back like you might have done with, say, an arm fracture.
The area of my thoracic still hurts with some movements, like dead lifting a canoe 🙂 I am guessing that some compression fractures do not heal smoothly. So they might remain problematic with certain activities, like sleeping on your back for hours.
Sometimes I wonder if I will ever have the confidence of wearing a backpack again.
Most of the time I am grateful. I have learned about Pain Reprocessing Therapy which has been a blessing for so many reasons.
Dimmer days have led me to believe that every day is a gift.

PMR causes severe pain in muscles; tendons; joints. The orthopods diagnose arthritis; the rheumatologists do their testing and many times cannot place the cause of the pain into a simple identification box. The ID doctors look at tick borne diseases but have no understanding of the pain of undiagnosed Lyme-Ehrlichia-Anaplasma-and-Bartonella when testing only shows convalescent titers of past exposure. And then there is COVID vaccine induced inflammatory pathology of the spine- multiple joints-muscles-tendons-causing daily debilitating pain.
PMR becomes the diagnosis when all of the above problems cannot be tagged with a confirmatory diagnostic test. Besides steroids; opiates; and biologicals with varying risks and side effects no one has an answer to removing the pain. Has anyone found Cannabinoids-CBD or THC--being safely used to take the pain away without steroids. Prednisone and Cannabinoids seem to have a negative interaction. I would appreciate any comments on pain control! Biologicals have a lot of side effects. High dosage steroids cause leg edema and blistering of legs with open sores that need long term attention along with other side effects. Thank you!

Some times I use CBD+CBN gummies to help with sleep. As a nurse I have seen that THC and opiates can be a slippery slope with chronic pain.
The most helpful thing I have found to be helpful with pain is Pain Reprocessing Therapy. I can’t tell you how it works to turn off pain at my brain but it only matters that it works for me (and so many others).
Noted that I am still at Prednisone 5mg and tapering but so far so good. The PRT is just another tool to help me get there.

I have had PMR for three years. Have been on prednisone for the entire time at different dosages

I also tried actemra and prednisone together and the result was my sed rate dropped to zero, however my Rheumatologist sent me to a cancer doc because he saw something he didn’t like in my blood work which turned out to be MGUS. The MgUS has not gotten any worse so they continue to monitor it every six months. They did take me off the actemra at that point because they weren’t sure what was causing the Mgus.

I am currently feeling good but trying to get off prednisone slowly. Was at 20 now at ten, ten months of lowering the dose by 1 mg. I am going to try reducing further by 1 mg until I get to 5 mg and then reduce by 1/2 mg until I get to 2. At that point I will have cortisol tested to see if my body has resumed making it . If it has I will keep going on the reduction of prednisone until 0000. 🙏

By the way, I made my prednisone reduction plan after joining this group. I have had more insight from this group than I ever got from my doc. Thanks everyone I feels good to interact with others going through the same or like issues ❤️