Possible Polymyalgia Rheumatica but unable to use steroids
Posted , 13 users are following.
I do hope someone can help! I have had severe pain in one shoulder, both hips and sciatic pain in arm and down outside of both legs for the past week.
I know that I have a compressed nerve my lower back, which has been causing severe lower back and sciatic pain on the side where the compressed nerve is located for several weeks, and I was awaiting surgical review/treatment. However, onset of pain in the multiple locations as well as in my back have led to me seeing a GP a today. He took blood tests. suggested I had Polymyalgia Rheumatica and that, h if it was P. M. R. I'd be given Prednisone to treat the problem.
However, having looked up Prednisone and read about contra indications and side effects I can see that, because I have Major Depression and GAD, for which I have been getting treatment for the past decade or more, steroid treatment is likely to be dangerous given my current Mental Health issues and and therefore would be impossible to tolerate.
Most information about this condition I have read fails to give any alternatives to Prednisone treatment. Is there any other treament for people who, like myself, are unable to tolerate steroids or do we just have to put up with the severe pain indefinitely?
0 likes, 21 replies
EileenH elizabeth112
Posted
No, the only real alternative to corticosteroids is Actemra - and when I looked it up for someone on another forum it did appear to be a good alternative for people with mental health problems. There are rheumies in the USA who manage to get it funded for PMR patients although really it is only approved for GCA, mostly because of cost I imagine at $17K per year. But otherwise - steroids are the first line approach because they work reliably, nothing else does and even Actemra is used together with pred but it allows the patients to taper off pred quickly.
Someone on another forum was afraid to risk steroids because he is bipolar so his rheumy put him on methotrexate (mtx) - which does NOT work on its own for PMR anyway, although for some people it can enable them to manage on a lower dose of steroids. Unfortunately, mtx caused him to develop a full-blown psychotic episode. So I would avoid that if possible.
Leflunomide has been used in a small pilot study and achieved remission in most of the subjects - my friend uses it and gets superb relief except it can (and did) cause peripheral neuropathy so she is currently trying a lower dose.
I have no idea where roger gets his information from that hydroxychloroquine works in PMR - there is no real study evidence and it is not recommended in the most recent guidelines of 2015. In over 10 years in the PMRGCA forums I have met no-one for whom hydroxy alone has worked, except a couple for whom it worked slightly as a steroid-sparer.
Nor would I agree with his statement that "Steroids are physiologically addictive and have many potentially serious side-effects, and you should be very cautious about using them. "
This study
https://www.medpagetoday.org/rheumatology/generalrheumatology/66912?vpass=1
doesn't agree at PMR doses. All medications have potentially serious side effects, even OTC drugs and the wonder-drug Actemra , and pred used carefully and sensibly is not the big baddie so many want to make it out to be.
While you are taking pred your adrenal function is reduced as the body knows there is enough corticosteroid available for physiological processes - just like your central heating boiler is told by the thermostat that the room is warm enough. Once the pred dose falls below about 5mg they start to wake up and in most patients function returns. To say it is addictive is a bit like saying the insulin a diabetic uses is addictive and they shouldn't use it. I have been on pred for 10 years, I have no adverse effects at all - and for me it is a lifeline. But that isn't your current concern.
I suppose it is too much to hope your rhumy and your mental health team would talk to one another?
Guest EileenH
Posted
I posted the link to Dr. Brawer's paper earlier, which describes a fairly large study group, all of whom had been initially diagnosed with PMR. Many of that group achieved remission after taking HCQ. You may not agree with the findings, and you may disparage Dr. Brawer, but to my knowledge the results have never been seriously questioned nor the paper retracted.
You speak of adrenals "waking up," but in fact they die back and then regenerate when the demand for cortisol steps up as steroids are tapered down. That's why the tapering has to been done very slowly. The use it or lose it response in glands is a well-known phenomenon that you can read about in any good endocrinology textbook. The "addiction" is a very real physiological dependence on steroids that can't be withdrawn suddenly without risking the patient's life. That's why patients taking steroids are told to wear their medi-alert bracelets or carry their cards with them at all times in case they end up unconscious in emergency.
Actemra (tocilizumab) is an RA drug that was licensed by the FDA for CGA about five years ago. It was effective and looked very promising for CGA-PMR. However, subsequent trials have shown that it can produce serious liver damage. Health Canada has issued an advisory saying,
"Serious drug-induced liver injury (DILI), in some cases resulting in acute liver failure requiring a transplant, has been reported in patients treated with ACTEMRA. "
Health Canada hasn't withdrawn certification for CGA, but now limits its use to patients who have normal liver function and are continuously monitored for adverse reactions.
One thing I would agree with you on is that prednisone is an affordable and effective treatment for GCA-PMR. But the side-effects are potentially very serious and should be carefully considered before beginning treatment.
EileenH Guest
Posted
I am aware of all you say - after over 10 years working with the charity I should. But Brawer's work is neither good, particularly ethical or confirmed. I'm glad he isn't my rheumy.
andypolly EileenH
Posted
I think I'm with you on this Eileen.
Prednisone is an affordable and the only treatment for PMR and the side effects are manageable.
For those having difficulty managing pain this is a very useful link
https://www.ouh.nhs.uk/optimise/information/default.aspx
Just page down and hit the link
Publications and CDs which may be of use to people living with persistent pain
ptolemy Guest
Posted
If I remember correctly there has been discussions about Dr Brawer's papers in the past. I think it was some company called Dove producing them. If I remember rightly people were not that impressed.
Anhaga elizabeth112
Posted
You need to discuss this with your medical team. Although the glucocorticoids can cause mental health problems they don't always. Also there are a couple of different forms one of which may work more safely for you than another. Would you be able to receive your early treatment in a hospital setting where you can be monitored? And as Eileen says, the rheumatologist and the mental health team should discuss this. Best wishes. Do let us know how you get on.
P.S. When all is said and done I'd expect the simple relief which comes from the pain going away would lighten your mood, whatever else happens!