Had my 2 month visit with my Rheumatologist last week. My first question was what exactly happens in the body with PMR? She said PMR is really not a good name for this disorder because the inflammation affects the bursa, the small fluid-filled sacs that cushion joints. Then I asked her which is better, heat or ice. She said ice to reduce inflammation but said most find it uncomfortable and to just do what feels better.
I am down 10 more pounds, look great on the outside but not feeling great on the inside. I feel on the edge of a flareup and my knuckles are swollen and knobby. She took x-rays and thankfully no joint damage, just the damn PMR. She gave me a Depo Medrol shot and said not to taper for at least 2 months until I see her again. Unfortunately the Depo Medrol shot that normally really helps was awful this time around. Jitters, sweats, nausea, weepy ect. NO MORE for me. I think too much too soon.
A week later I logged into my provider portal to view my blood work results. I have been Vegan for 3 months so I was expecting rave reviews! Ummm... that wasn't the case. Cholesterol was high and I was on the borderline for C reactive. How could that be? I lost weight! So much for the Vegan diet reversing autoimmune disease. I am going to eat a F&** bacon sandwich with a cup of coffee!!! No, just kidding. But it did upset me a lot. The Actemra is probably the culprit, I can't imagine such a low dose of RAYOS is effecting me? What is interesting is my glucose is not affected like it was in the early days of PMR and higher doses of RAYOS. I am not sure, waiting to hear from my doctor to see what she has to say. I absolutely refuse to go on a statin. I am also going to ask her about medical cannabis. A few of my colleagues are using it for various illnesses and find it helpful and covered under insurance.
To be continued... xo
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Marie1479
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Swollen knuckles can be very sore but I find nice warm water and then if you can bear it rub moisturiser or oil and get circulation going. Is it humid there at the moment?
I have been veggie for 30 years or so and my cholesterol gets higher Every time they add a drug ...currently on 14 drugs a day and a weekly one. Since pred it's gone from 5 to 8.1 in UK scale. It's a wonder my blood gets round at all. 😂
If the bl*$ted doctors asked the bl*$ted patients - and believed us - they would gather that PMR is NOT necessarily bursitis though it can be. The inflammation in PMR is supposedly in the synovium and that would (perhaps) mean bursitis - but it is a minority of US doctors who have this belief that PMR is joints. I had NO joint problems at all and to the best of my knowledge neither do the majority of PMR patients. I do develop trochanteric bursitis every so often but it is different and only painful in the hip JOINT when it has been ignored for months. The initial pain is in the outer face of my thigh. Ice/heat does nothing - steroid shots are the only thing that stop it progressing.
I know relatively few "just" PMR patients who have knobbly knuckles - those who do have OA. A few say they get great relief from wax hand baths. But how is she so sure it is the PMR?
It is a very strong claim that going vegan reverses a/i disease - and there is absolutely no evidence from reliable sources that it is true. It may improve your symptoms - but you do need to be very careful you have enough protein to maintain muscles.
I hear your frustration because I am too! I have read soooo much and there are so many different explanations of this disease. Yours, my friend (from the last post) makes much more sense. When I first slipped on that ice and my knee blew up, my orthopedist was clueless as to why after scoping my knee (unnecessarily) I got worse. I remember him holding up the picture of the inside of my knee, scratching his head and him saying "your synovium is red and angry"
My Rhemy said it is not common for PMR to affect the hands but she's seen it and claims once I am in remission it will disappear. For my sake I hope it is just PMR because my right hand looks like one of a old lady. She ran an RA test just to make sure.
PMR affected both my hands and my feet - but it was tenosynovitis causing sharp stabbing pains in fingers and around the metatarsals. I have one knobbly index finger, a perfect example of Heberden's nodes, nothing else. Mine has all disappeared with pred, it took about 3 or 4 months, a bit longer for the hip pain. But it had all been going on for 5 years by then.
Before you go any further get that bacon sizzling... you'll think you've died and gone to heaven...then you'll be ready to start again...
Wow, bummer. I'd have the bacon sandwich!
Query me this, please... if it's the bursa (the small fluid-filled sacs that cushion joints) that the inflammation effects, why do my muscles hurt, not my joints? My quads, hamstrings, buttocks, deltoids, trapezius, etc. etc.... I have never really had "joint" pain. (?)
That has always been my question. Initially I thought my pain was OA getting worse but I was always puzzled by the fact that it was my muscles which hurt, and not my joints. So when anyone says that PMR is a disease of the joints I ignore them, because it's simply not true, not for me anyway. I've even had people claim that the pain is "referred" from the joint to the muscles, so convinced are they it's a disease of the joints. My suspicion is that early on osteoarthritis and polymyalgia were present in people who were being studied and the symptoms were confused. Hence the other claim about pain and stiffness being worse in the morning. Which is, in my experience, true of OA, but untreated PMR can be just as bad, or worse, at midday or in the evening as it is upon rising.
Exactly. And PMR is a vasculitis - the joints, the synovium and bursae, have a poor vascular supply. That's why the oral pred takes so long to help bursitis and steroid shots work so much better.
I don't think I have had DepotMedrol as such - that is a slow release form which is injected into the buttock and then releases its dose slowly over a few weeks. I'm fairly sure my rheumy just uses ordinary injections of methylprednisolone so the entire dose is administered locally at the trigger point they are aiming for. Mine have always been into the point where I squeal loudest when the doctor has poked the area.
Oh dear. That made me squirm. Poke my sore spots at your peril!! They would have to tie my hands and feet up so I didn't punch them. Dentists always wonder why I sit on my hands if they have to do an injection. They are lucky otherwise a broken nose might be their reward. 👃👊
The last lot were really funny! The rheumy had poked the hip bump to find the sore spot and then the nurse was warning me there'd be a "little needle prick". He and I burst out laughing - as I explained that the pain of the injection was utterly insignificant compared with the reason it was being done!
Funny - I've sat on my hands at the dentist too...
You are right. When the pain is at its height anywhere I would let them do anything to stop it. Before I had back surgery my left leg was so painful I would have had it amputated.
My cholesterol went off the charts with Actemra 319. Never before did I have a problem. Tomorrow I am going for my synacthen test. I most likely will have to stay on some form of steroid forever. Every time I go below 8.5 I feel the adrenals and all the symptoms of adrenal insufficiency. As far as the Actemra, I went from once a week to every other week and my numbers stayed the same very low. So my rheumatologist and I decided to stop the shots completely and see where it takes us. I have been on prednisone since June 2015 so we are thinking that perhaps the GCA is in remission. Also spent three years on prednisones with PMR. Only been on Actemra since August 2017 but it did what it was supposed to do very quickly and efficiently Without any infections to date. Not looking forward to this test tomorrow I hear it can be devastating to one’s body but I need to know if there is a possibility of the adrenals coming alive. Will post tomorrow if I am still on this planet. The photos of your knee are unbelievable. Also a very difficult diagnosis for anyone to make. The doctors that did make this diagnosis are pretty astute.
I too refused to take statins. My sugar is not reacting well to the prednisone Reduction. I have a feeling it is all adrenal related. I feel like crap. Have put off eye surgery, knee surgery and now toe needs surgery as well. Didn’t want to have surgery while on Actemra.
Try sticking to your vegan diet. It is paying off with the weight loss itself👗girl. I’ll bet you look fabulous.
Marilyn
Ps was approved for med marijuana just waiting for my card. Got to get off the tramadol.
Thank you for this post. Very helpful. My Cholesterol was 170 and glucose 70 before starting Steroids. My Cholesterol shot up to 268 and glucose 101 when I was at 20MG Prednisone and took a while to come back to 200 and glucose 88 with strict diet. Since starting Actemra my Cholesterol started increasing again little by little and now at 261! My glucose actually went down to 70. LOL Everyone keeps saying how good I look and sooo healthy. If they only knew....
I am thinking about stopping the Actemra but wonder if then I will have to increase my steroid dose and how will I feel? I work full time and just can't afford to be sick like I was last year. I will be curious to see what the dr has to say.
Please keep me posted about your synacthen test and good luck.
The synacthen was a breeze. No side effects whatsoever. I should have the results early next week. Good thing that happened was the head of the infusion department recommended a New Endocrinologist to me and I was actually able to get an appointment for April 16. My endocrinologist did not want me to have this test. He basically took it for granted that my adrenals were dead and prescribed dexamethasone which is an improper form of Cortizone for adrenals. Once I read about it and with the advice from this forum I did not take it. I seem to be doing well without any Actemra. Only time will tell. I expect the inflammation numbers to go up a bit but not a lot. Sometimes we need the Actemra to get us through a hurdle. It worked well for me but it’s time I had some of the surgeries I need and that’s not a good thing to do while on Actemra. You might give it a try because you can always go back to the shots. My glucose is still high from the prednisone but I think it’s a permanent thing for me. It did not make a difference whether I was on 40 mg or 8 mg my glucose was still high. I watch the carbs carefully. I would love to be considered no more prediabetic. Stay in touch. Marilyn
I lost 16kg and cut down on fat and my bad cholesterol went up. It's hereditary. I can't lower it with diet. It's not too high so I don't have to have meds.
My bursitis has been caused by calcific tendonitis. The Rheumatologist thinks I have seronegative RA, but sonetimes all the symptoms don't fit into a neat diagnosis. So frustrating!
Calcination in some tendons is a sign of spondyloarthropathy. Which in early stages can mimic PMR. It is a minefield. But I think it is more in achilles and the like (might be wrong).
My Achilles is a place that gets sore too, but it hasn't flared enough to investigate. My neck, lower back and upper back hurt the most. Hydroxychloroquine and prednisone worked really well for me.
Nap1, don't worry about the synacthen test. I have never heard it can be devastating to the body. I had mine last May,...blood tests and injection. Simple test. 1 person, on this forum, even SLEPT throughout the procedure!
Marie, how much prednisone are you on. You mentioned Rayos - did not know that was used in US. I am in Fla and on Actemra. I am on 7 mg pred. Would kill to lose weight but not enough to go vegan. I do feel a lot better since Actemra infusions. Have been following your progress.
I’m am at 4mg of Rayos. It’s great and has allowed me to continue to work full time as it’s time released. I do not wake up stiff in am. Yeah the Vegan thing is tuff...
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End of my rope
Alternative treatments for Polymyalgia Rheumatica
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