Possible Polymyalgia Rheumatica but unable to use steroids

I am afraid pred is the only thing that really helps PMR. You could always try it for a week or so to see if it works OK and you could just stop if there were problems.

If I were you I would try the pred. If it effects you adversely you could discontinue it within two weeks without a problem.

you may find that you can take it afterall.

Do you have leg and arm stiffness, especially on waking in the morning? Your symptoms sound more like nerve compression or entrapment than PMR. In sciatica the pain radiates quite a distance from the lesion, which is not typical of PMR. PMR usually produces bilateral symptoms of pain and stiffness in the girdle muscles of the shoulder and neck, and in the pelvic region. It can occur in any muscle group, but is usually localized around the hips and shoulders.

Prednisone and similar steroid drugs are the only treatment available for the giant cell arteris (CGA) form of PMR. They act quickly and are very effective but as you know have serious side-effects from long-term use. Some patients who are initially diagnosed with PMR, who lack a history of CGA, go on to develop a sero-negative form of RA. They can be successfully treated with RA drugs like hydroxy-chloroquine, which act slowly but are effective at reducing symptoms and producing remissions. These drugs have some side-effects but are generally well tolerated.

Your GP will probably refer you to a rheumatologist for further evaluation. There are no blood tests that specifically diagnose PMR. PMR is a set of symptoms that may be presented by several underlying conditions. So, the diagnostic approach is to try to eliminate other possibilities with blood tests. If these are negative, the presumptive diagnosis is PMR, which could be GCA-related or RA-related as mentioned.

I have the GCA form of PMR and have had acute sciatica in the past. There is really no comparison. Sciatica is excruciating. PMR can be very painful during flares, but generally is not so severe. In some people it is manageable without steroids with NSAIDs for short-term use. The drug I was prescribed for sciatica was ketoprofine. It did the job, but is only licensed for short-term use.

Your doctor may recommend trying an NSAID for a few weeks before considering prednisone. Steroids are physiologically addictive and have many potentially serious side-effects, and you should be very cautious about using them. Good luck!

this is an interesting read.

just click on it.

https://www.aafp.org/afp/2006/1101/p1547.html

I think it is wrong to say to somebody who has PMR that "steroids are physiologically addictive and have many potentially serious side effects, and you should be very cautious about using them".

We all know that steroids are the only way to treat the symptoms of PMR. Nothing else works. If you have the crushing pain that comes with PMR the only relief from this is to take steroids. I'm sure somebody can put up the link to the research that has been done on side effects of long term steroid use. Eileen?

If you are mentally fragile I would think that the last thing you need is the stress of more pain to deal with. It is possible to get help with pain management through the NHS. I managed to get a referral to an NHS Pain Rehabilitation Unit in Oxford. They were brilliant. They helped with a personalised exercise and stretching regime. On the psychological side they helped with meditation techniques and mindfulness. I'll post some links later.

It's absolutely right to caution patients about the use of steroids. Patients should understand that prednisone suppresses the natural production of cortisol by the adrenal cortex, causing over the longer term atrophy of those tissues. People who are on steroids have no choice but to continue use because abruptly stopping will put them in the emergency ward. Tapering off steroids gives the tissues time to regenerate and pick up the slack in cortisol production, but in many cases patients find they cannot get fully off the drugs and then have to cope with the side-effects.

That means people taking steroids must now deal with serious conditions such as high blood pressure which can lead to heart disease, elevated blood glucose which can lead to diabetes, reduced production of new bone which can lead to osteoporosis, increased risk of cataracts, weight gain and fat deposition around the belly, and immune system suppression which can increase the risk of infection including pneumonia. These side-effects are all well documented, as is the fact that most PMR patients will experience at least some of them after one to two years use of steroids.

And this doesn't take into consideration pre-existing conditions, as Elizabeth has mentioned, where steroids can interfere with other treatment. Clearly her doctor knows about the contra-indications and has wisely advised against steroid use.

And finally, patients should understand that PMR is not a disease but a syndrome, a set symptoms that are expressed by several underlying conditions, one of which is commonly referred to as "true PMR," the type that is associated with CGA and currently can only be treated with steroids. Many patients initially diagnosed with PMR have no history of CGA and go on to develop a sero-negative form of RA, which can be treated with RA drugs. One of those recently posted to this forum saying she had now been re-diagnosed with "PMR-Onset RA."

Elizabeth, please read the paper by Dr. Brawer which I posted in another thread. This is a study of patients who were initially diagnosed with PMR and declined steroid use, and then went on to develop RA. They then were treated with hydroxy-chloroquine and the majority achieved significant symptom reduction or complete remission. What Dr. Brawer's work emphasizes is the importance of accurate differential diagnosis. Many patients with PMR symptoms, but without CGA history, can avoid steroids altogether and be successfully treated with a combination of NSAIDs and RA drugs from the outset. Listen to your doctor and follow his advice. He will be fully aware of your medical history and will I'm sure find a specialist who can accurately diagnose your condition.