PMR and MGUS/SSM/MM multiple myeloma

Curious how MGUS and PMR seem to be linked for some individuals. These autoimmune conditions never seem to follow a straight line. I have learned to focus on health instead of the what ifs or the what the h——! It’s good to hear others are in this boat with me and paddling forward. I love to hear your successes.

Since I was diagnosed with MGUS I have had seven squamous cell carcinomas removed and have developed multiple keratosis lesions, too many to treat. Squamous cell carcinomas are more well-known in Multiple Myeloma than MGUS. Anyone else experiencing increased SCC lesions?

Hello! I haven't been diagnosed with PMR, but if I pushed for more Dr appts/tests, I suspect that may be what they would determine. I was diagnosed with MGUS early this year, and have had 3 vertebral fractures, none this year tho. Over the course of this year I've had strange pain with increasing intensity in my lower rib cage area, posterior, as well as front of pelvic bones. Feels kind of muscular, but I have a ton of tenderness to the touch as well as some possibly lumpy areas (again, hard to tell in these areas!) but it is for sure not fun. And of course, the normal spine stuff that goes with my degeneration. Att this time I'm not interested in more tests/Drs than I currently have, and I would not take steroids unless utterly unable to function - and I am for sure not there. I do all the things such as diet/exercise/etc, and I also do use CBD + THC for pain relief. For me, the combo works better than one or the other, any reputable vendor will share that info with you and talk about the cannabinoids, and the need for full spectrum for best results; also a good topical CBD cream is really unbeatable for applying to reachable areas, and I have not tried a THC topical so can't report on that. I have long been a proponent of CBD for my spinal pain and started adding THC once it became medical in my state. A great balance for me can be a low dose 1:1, and I like that combo best. Of course it will depend on your own body, but I highly recommend trying it out as a helpful natural aid for pain. I'm going to do some more experimenting for myself, I've stuck with micro dosing when working and sometimes up it when I'm functioning (house cleaning has become more challenging at times) or at the end of a long day. Another thing I can highly recommend is stretching/yoga while you are micro dosing, this feels so good to the painful body! I'm not a Dr but I work directly with a Cannabis co as a part of my job, and as such I have a good amount of knowledge 🙂 I wish you the best, and hope you give it a try!

I am taking THC/CBD/CBN gummy to help with the pain so I can sleep. Do you re-dose half way through the night? Or maybe even take half of a gummy? I find I have to get out of bed and sleep in a recliner chair to get back to sleep.

I've definitely been there! You can try that, maybe start with a half when you wake up, but unless it's nano it may take awhile to kick in. You can also try a stronger dose to begin with, it may be that could help you sleep through, although we know effects don't last that long; however if your body is resting in a deep sleep, it could be an option. You could also experiment with higher levels of each of those cannabinoids, one at a time. Take your tri- gummy + maybe another 5-10 mg of CBN. If that doesn't work for you, change to + CBD, etc. It's such a trial and error! This is all reminding me for myself, don't give up and keep experimenting. Best!

Just wanted to share my experience with you. I was Dx-ed with PMR and about 6 months later MGUS was on the table. I had a workup and they were good to go. Not so fast I thought. My understanding is that MGUS was relatively newly diagnosable cancer - this was late 2021, early 2022. I managed to get a Telehealth appointment at a local teaching hospital with a local expert on the cancer and he convinced me and my other doctors that it was not MGUS. Dodged that bullet. If you have any question in your mind that you really may not have MGUS please go with your gut and seek another knowledgeable opinion.

Next, as for steroids and bone density. Please see an endo if you don't already have one to monitor your calcium and other potential problems during your steroid treatments. Have you had your vit D tested? That is critical to bone density and with all the sum block teaching, adds and products on the market many, many people now have low vitamin D.

I was diagnosed with Smoldering first and PMR came on about a year later. No bone lesions nor fractures. Have had full body MRI, Pet scans, full body xrays. Taking Alendronate (generic Fosamax) 1X weekly. 4000 IU Vitamin D and 1000 mg Calcium daily. I'm down to 9 mg daily of Prednisone, next week to go to 8.5. I haven't seen any working together by Rheumatologists and Oncologists in my case.

Years ago I was diagnosed with PMR but I am not familiar with Smoldering. Can you tell me about the symptoms?

Smoldering Myeloma is not necessarily described by symptoms but a stage of the progression to multiple myeloma as defined by a certain criteria. You can learn more out more about it in this publication: https://www.myeloma.org/resource-library/understanding-mgus-smoldering-myeloma.
There is still much to learn about myeloma as each case in different. I feel that the International Myeloma Foundation, https://www.myeloma.org, is a good resource.