I need some clarification. Thanks to Actemra, my inflammation numbers are practically at zero. Thus, according to my rheumatologist, the shoulder pain I have is no longer from PMR, since PMR pain is caused by inflammation. I do have a lot of other things going on in my shoulders which could account for the pain. But, on this site, we've heard from many people diagnosed with PMR who have low inflammation scores. So, it is then possible to still have PMR without inflammation? Also, my pain levels seem to follow the PMR model (mostly in the morning and late evening). Would appreciate any feedback. Thank you.
Just a not of clarification please, were you diagnosed with both PMR and GCA or just PMR?
I am assuming it was both, because Actemra is only used for GCA in the UK.
However, I would ask for a scan to see if the PMR has caused a rotator cuff injury, which can and does can come along with PMR.
Now I am no expert but someone will come along who will know more than me. But that is the question I would be asking.
I’ve had classic PMR symptoms for 8 years. Sometimes my labs are up. Sometimes down... mostly down. However, it is very hard for me to get below 10 mg prednisone , though I’ve been symptom free at 5mg. for months at a time, but then flares occur.
Predisone might also lower your inflammation numbers.
They give Actemra in the US just for PMR , not GCA.
Hi. Same. For me!!! my labs are great. Been on actamara for 7 months. And yes I still have stiffness in the upper thigh area (both). I have only been effected by p m r in the thigh.. in the morning and at night !!! Now the rummy is telling me I may have a patch nerve !!!! I don’t. Most of theses docs don’t understand p m r. I am down to 1 mg predsone
Hi Susan
My inflammation markers have always been low and it has led to difficulty in diagnosis. My Rheumatologist agrees that it is unusual but not unheard of to have PMR without inflammation blood markers. In addition to the morning stiffness and pain, I have had visible inflammation in/around knee joints without any markers.
Connie
No, just PMR. I'm in the U.S. I do have rotator cuff injuries on both shoulders, this thread is the first I've heard of it being associated causally with PMR. I'm continuing to taper the prednisone - with the Actemra, I can do 0.5 decrease each month. Just trying to understand how it all fits together. If PMR is caused by inflammation, and I have none now, does that mean I am in remission from PMR? But, then, what about people who have low inflammation markers and apparently have PMR?
interesting blogg. i am down to 2 mg. still with bilateral pain in shoulders, so i am thinking is it pmr. or not. so rather than risk it i have , made an appointment for bloods doing if they are ok then i will start to reduce again. but i have been on cherry juice for 4 weeks now and i think its begining to work, they recon it takes around 5 weeks to kick in. but i will report back on this in a couple of weeks
Susan
Put this in your search engine:
PMR and Rotator Cuff.
You will find a wealth of information.
Unfortunately I do know quite a few people who have had this problem and some of them had surgery.
Cherry juice? Can you write more info about that please?
No Bethune. Actemra is being used for GCA, that is all it is officially approved for as a result of the phase 3 clinical trials, but rheumies seem to be carrying out their own individual patient studies in PMR when they can get funding. It is very expensive so that isn't easy - but I imagine the patients who have no insurance and so qualify for Genentech's programme provide a good source.
There is not a lot of experience with Actemra and how it works in PMR - but I can't see how it is significantly different from using pred in PMR in the sense that, if you are on the right dose, enough to manage the symptoms, then there is no inflammation left over in the body to cause raised markers. The raised levels of ESR and CRP are due to the liver producing proteins in response to the inflammation (CRP and it contributes to the change in the rate blood cells settle). That is how you can monitor whether the inflammation is under control in people where they did have raised levels. And as you say - there are up to about 20% of patients whose blood markers never were raised but they had all the symptoms of PMR/GCA which then responded to steroids.
As far as I know, Actemra/tocilizumab interferes in the pathway that produces IL-6, an inflammatory substance that is thought to be at least part of the cause of the inflammation in PMR/GCA. I don't know if that then has an effect on the actual autoimmune disorder - maybe if it is starved long enough it goes into remission. But there have been no real clinical trials using Actemra in PMR, just in GCA. Even the GCA trials don't yet show how long any remission induced lasts - and some people do not manage to get off pred altogether anyway. What I'm saying is that I don't see how the rheumy can be so adamant the pain is no longer PMR.
However - there are several things that are often found alongside PMR which could be causing the pain you have. Bursitis in the shoulder joint CAN be part of the PMR and will usually take some time to resolve - and I suspect that if the dose of pred is reduced quickly it will take even longer. Just a theory.
Anyway - you need some imaging done on that shoulder to see if there is a mechanical or structural problem causing the pain.
I've had rotator cuff problems since onset of PMR. Exercises given me by a physiotherapist have helped. Also I had some low level light treatment for the first, more serious, injury which probably helped speed the healing. I wasn't aware until recently that this was one of the add-ons which can occur with PMR. I think it may be more to do with the muscle-weakening effects of pred.
Need to correct what I said. Rotator cuff issues didn't occur until I'd been on pred for well over a year. A flare up of back issues didn't occur until even later, although I've religiously followed my exercise protocol. This is why I blame pred not PMR itself.
Hi Bethune, I take cherry juice too. Apparently it is important it is the juice of the sour cherry ideally Montmorency cherries. I love cherry juice anyway. It is not that cheap though.
Bethune, I know this sounds crazy, but have you ever tried to eliminate food from your diet that may be causing inflammation. I believe our diets have a great effect on our well being. Thinking positive, being active with a smile. ☺️
Interesting how different things seem to work for different people and have no effect on others. Too bad we couldn't run double blind tests with a placebo to check the various things. Not only is there cherry juice, but also aloe vera juice, liquorice, ginger, turmeric (curcumin) .... It's important to note
there are some contraindications for taking some of these, btw.
Probably the best thing we can do is avoid refined cereals and sugar.
My experience s that in the U S , Actemra is commonly prescribed for PMR without GCA. Perhaps it is off label, But it is not unusual.
google it beth it will give you more accurate infoe x
It certainly is off-label. However, your experience is very different from mine. Although on the forums we do have a few patients on Actemra for PMR it is not used anything like as much as for GCA.
Not a lot of help, however I always wanted to have my blood drawn while I was at my worst, not after large amounts of steroids were helping. I had so many issues that didn’t fit into PMR initially, then it was all upper body.... forget the walker and crutches.
I also still have flu symptoms. Fever, sweating, nausea. Thought maybe menopause?