Worse after 2 years

[Greytree]

I had the first symptoms of PMR in the spring of 2021, was diagnosed that fall and started on steroids in October, 15 mg. My symptoms improved, but never completely went away. It wasn’t pain, but rather extreme fatigue and legs and arms that felt heavy. I couldn’t squat and I couldn’t raise my arms except briefly. I have tapered to 5.5 mg of prednisone and over the summer up until now I’ve had seven monthly infusions of Actemra. At this point, I maintain walking daily up to 2 1/2 miles, slowly and do some tai chi, too. Still, It’s uncomfortable to squat and makes me a bit breathless and sometimes dizzy. I still can’t raise my arms without discomfort. They feel too tired to keep them up. My balance is not great, but I can rise to the occasion and play music and socialize though it takes a period of rest later. For a couple of months, I’ve had new pains intermittently around my body, including a shooting pain between my right shoulder and right side of my neck. I can’t really turn my head well . Anyway, I feel I have only gone backwards and I am at a loss on how to move forward. My rheumatologist is an old man who should be retired. He seems a bit senile and is not very helpful but means well. Any guidance at this point would be appreciated.

[PMRpro Ambassador]

I'd suspect that you never cleared out the inflammation at the start, being a bit more aggressive with 20mg often works better.

I've been on Actemra for PMR for some time now - it has reduced my need for pred but some wobbliness and fatigue is still there. Even Actemra doesn't stop the underlying autoimmune disorder which, a bit like flu, persists at attacking the body, just it can't cause the inflammation that causes the need for pred and many of the symptoms. Now you are at a low level of pred, your adrenal function must return and that contributes to the fatigue and some symptoms. Only time at a low level of pred will encourage that to come back.

In the case of GCA, only half of patients get off pred altogether with Actemra. This is because there are at least 3 different mechanisms for the inflammation in GCA and Actemra only works for 1 of them, biologics are very specific in their action. I don't know if the same applies in PMR - I suspect it does.

I also suspect that you have some myofascial pain syndrome issues that are causing your shoulder/neck problems - tight muscles, possibly with some trigger points in them which can be felt as hard knots of inflamed muscle fibres. I have similar problems, I find targeted treatment helps a lot - manual mobilisation of the trigger points or steroid injections into the area. In an emergency, an 800mg flooding dose of ibuprofen (Advil or Motrin) and a heat source over the sore area can work minor miracles as it relaxes the muscle causing the problem.

[Greytree in reply to PMRpro]

Thanks so much! Should I get tested for inflammation markers to see if they are high? Do you think if I didn’t clear out the inflammation at the beginning with a higher dose of prednisone, that I need to take a high dose now? Also, should I ask for PT and “manual mobilization of the trigger points?“ In the meantime, I will try the Motrin.

[PMRpro Ambassador in reply to Greytree]

No, I think you just don't have any leeway as you go down and it may just be you, many people are never totally pain-free, Your markers don't mean anything on Actemra - the don't rise because of the way it works. And the Actemra is there to deal with the inflammation from one specific cause. The rest of the comfort state really depends on being on enough pred - but some think that Actemra deals with everything, it doesn't but that is a major education programme really.

[Greytree in reply to PMRpro]

Aha! Looking for the silver bullet. I was getting ready to quit the Actemra infusions because I didn’t think they were helping me. But from what you’re saying, I should stay on them, correct? What would happen if I stopped them?

[PMRpro Ambassador in reply to Greytree]

"What would happen if I stopped them?"

Er, pass ... The crystal ball is on the blink again! Probably you would need more pred. And I forgot to say before - a good physio or therapeutic masseur might be helpful. My physio does a lot for my back problems.

[Greytree]

Thanks. I’ll see if I can get PT from someone who understands PMR. My doctor sent me to a PT person who kept digging with her thumb and fingers into my upper arm, and it hurt like the devil. When I complained and groaned, she said, no this is the way it feels but it loosens things up. I never went back and My right arm hasn’t been the same since. As to Actemra, are you not afraid it might hurt your liver?

[PMRpro Ambassador in reply to Greytree]

Why? It happens but it is rare, But it also occurs with methotrexate and leflunomide, Pred doesn't cause liver problems but it has a lot of other potential adverse effects when used long term. No drugs are free of problems and I imagine the likelihood of liver problems is lower with Actemra than with paracetamol/Tylenol which is freely available without any monitoring.

My physio doesn't "dig into the upper arm" - she identifies specific places to work on and it can be quite painful but it never lasts and always improves things.

[Sharitone in reply to Greytree]

I guess you are having occasional blood tests to check your liver function? If it goes on the blink, you can stop the Actemra on the spot, until it has recovered.

Also, if you draw a blank on the neck problem, maybe you could get your neck x-rayed or scanned? Mine has just been x-rayed for a similar problem.

[Greytree in reply to Sharitone]

Thanks. My rheumatologist thinks such testing is not needed. He’s 80+ and said they never used to do that. (!) Am in process of getting a new one. My GP seems to think that all my ills stem from depression. I am not depressed but took her pills for about 90 days. I felt no better physically and just kind of zombiefied. Am Getting a new GP too. Will see if some kind of X-ray/MRI/scan is possible then.

[PMRpro Ambassador in reply to Greytree]

They didn't used to use anaesthetics for surgery either ...

[Sharitone in reply to Greytree]

Wow! You're not depressed but they treat you for depression? That seems to be the stock response when they don't know what the problem is!

I'm a bit shocked you are not being monitored on Actemra. Good luck with finding your replacements!

[Greytree in reply to Sharitone]

I have already got replacements, but I’m waiting for my first appointments. The rheumatologist one isn’t until April. Looking forward to the change. (-: This is all spurring me to see if I can finagle a test now! Thanks

[Greytree in reply to Sharitone]

I convince my regular doctor to give me a test that would show how my liver is doing and I’m waiting for the results now!

[sidra1968]

Can't add much as I am new, but I also have the shooting pain between shoulder and neck..and my neck is never pain free, really. I bought a theracane to work out the muscle knots and tightness..but be careful because it can dog in too hard. Seems to help, though.

[Greytree in reply to sidra1968]

I have never heard of a Thera cane and looked it up. Interesting. Looks like something I might hurt myself with. still, wish I could try one somewhere. Thanks