Navigating a flare

thank you, Eileen. There is no last dose I felt well at - just better. That was 13.5 before the Actemra, and my rheumatologist has had me drop 2.5 with each infusion. That was sort of o.k. and then she had me stay at 7.5 after the second to last one, then told me to drop to 6 after the last one. I was in excruciating pain by that time, so I dropped to 7. Pain just got worse of course. That's when I decided to pull the plug for a minute and went up to 10. It's been better. My rheumatologist has said she doesn't know what's going on with me, that my responses aren't typical. Before the Actemra, she told me to drop 2.5 mg per month on the theory that my pain was prednisone withdrawl, not PMR any more. That was a disaster, so I went back to 13.5. Using the DSNS method, I then went from 13.5 to 11 (in 2 cycles) but couldn't get any lower until I started the Actemra. I was diagnosed based on bilateral shoulder pain in the morning and high inflammation. And the fact that prednisone helped. The Actemra has knocked out the inflammation - I'm on the lower end of normal. The pain persists, as well as exhaustion. I've been tested form RA and lupus - negative. What other things would you suggest I research? Thank you so much.

Any back pain? Look up ankylosing spondylitis and Behcets (though I'd be doubtful about that but you never know!). I have a forum friend who was dx'd as PMR but was sure it wasn't - and eventually got a dx of ankylosing spondylitis with a Behcet's crossover. 

But really - she sits there and tells you you are atypical but isn't thinking outside the box! Prednisolone DOES help all sorts of things - just sometimes other things work better. If you aren't responding to Actemra - the first thing to think is "Is this really PMR?"

Your question Eileen - what sort of pain do you have? and when ?

​My increasing pain over the last few months is across the shoulders and lower hip areas - the same areas where extremely painful stiffness originally set in. It is like a burning pain - almost like a bad sunburn pain, but internal.

​This  pain has been getting worse and more frequent over the last year - increasing pred helps, so I have always considered this pain to be PMR related. It does not always come on soon after I drop (at 11 again), but when it does, it gets to the lower side of unbearable. I persist for several days and then have always gone back up 1 - it improves.

​BUT.............last time I was in unbearable pain, fatigue I took to the bed in the middle of the day, laid on my back, with my exercise ball under my spine (lower back). I was sooo miffed, I stayed all afternoon, snoozing on and off...................early evening the burning pain had settled down........now I am totally confused........what are your thoughts ?

My suspicion would be spasmed muscles - probably due to myofascial pain syndrome or something similar. It isn't directly PMR but it is caused by the same cytokines (proven in unpublished research) but located in trigger points and the fascia rather than being systemic so at higher doses it often responds quite well but as the dose reduces it comes back. For me it is the sign of a flare in that when it starts I know it will progress and all the typical symptoms of PMR will eventually show up. The effect on the muscles is exaccerbated if there are any chiropractic-type problems - pelvis not right so you walk unevenly, sacroiliac joints irritated, vertebrae and discs notarticulating on each other properly, carrying something heavy on one shoulder which then tends to throw the balance of your back muscles off. I get it in shoulders, or more accurately around the shoulder blades, and just above the pelvis in the lower back. I had a few days a few weeks ago where the pain just below my waist was horrendous. The GP panicked a bit and thought it was spinal but I persuaded her otherwise, she did some needling and it improved for a week and returned rather less severe. Then I gave in and upped my pred dose by 2mg for a few days because I could feel the sacroiliac joints niggling - gone! Just about back to where I was now and it hasn't returned so it'll hold until I get the physio appointment for massage and manual mobilisation - been waiting 2 months now so must come soon! 

It was something I found a good, down to earth, Bowen therapist could help a lot - but the one I saw here is a bit airy-fairy ... It doesn't help everyone but it is worth a try. But for me now, therapeutic massage and manual fascial release is a life-saver - from a good sports physio/massage therapist. 

 

Thank you, Eileen. I looked them up and they don't seem to fit. I don't have spinal pain, although neck pain has been added to the mix in the last few months. Otherwise - just shoulders. I think it started with my hip - had a replacement in 2015 and had let it go quite awhile. The surgeon said it was the "angriest" hip he had ever seen. Then a few months later the shoulder pain starts, coupled with massive inflammation, which they all say is totally unrelated. Anyway, the hip is just fine. If anything occurs to you, please let me know. I checked all of the vasculitis syndromes listed by the Mayo Clinic, and none of them seems to fit. Thank you again - I believe you're more well read on this subject than any of my doctors.

Look at the response to Flutterbie. Myofascial pain syndrome often accompanies PMR - same cytokines but in sifferent places. I'm not convinced Actemra would work there. But of course - late onset RA would fit in too and might not respond to Actemra although it was first approved for RA.

It is all a mystery sometimes - which is why you need a doctor who thinks laterally.

Thank you Eileen.  I am grateful for the knowledge you share with us all. I do have chiropractic problems too, so I see an Osteo on a regular basis.

 I must make another attempt at finding a good Bowen therapist. I still have not tried Bowen ,as we do not have one close by- my next mission - find one.

 

Can your osteo find/do anything? Mine helped a lot - especially in tandem with Bowen