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?
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.
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.
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
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?
Roger, I have not come across anyone who has been able to use NSAIDs effectively for PMR, if they do work it seems that they are usually helping something else. You say that you are taking ketoprofen for sciatica. Are you also taking pred for the GCA? If so pred and NSAIDs do not go well together. NICE do say Ketoprofen increases the risk of gastrointestinal bleeding when given with prednisolone. Manufacturer advises caution.
Severity of interaction: Severe
Evidence for interaction: Study
NSAID (Ibuprofen), recommended by my dr before PMR diagnosis, gave me a stomach ulcer which I find more life threatening than prednisone. I felt so good after my first dose of pred, I immediately stopped all other drugs. Pred side effects, such as hair loss, round face, weight gain subside once lowered to a lower dose (7 to 10 mgs for me). I have taken pred for over three years and am at 5 1/2 to6 mgs currently.
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.
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.
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
Just page down and hit the link
Publications and CDs which may be of use to people living with persistent pain
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.
I’m afraid that I might have a recurrence of psychotic symptoms and suicidal impulses. Having experienced these before I really can’t cope with having to deal with them again. and, since it took me so long to emerge from the “black hole” that is Major Depression which I’ve experienced before, this is most definitely not something I’d like to re-experience as a result of medication side effects. I also have to take medication for my Depression and GAD, which may interact badly with another medication of this kind. .
Hi elizabeth112
We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.
If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.
Their contact details are on our patient information leaflet here: Dealing with Suicidal Thoughts: Where to get help, which also offers lots of other advice on how you can access the help you may need.
If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you’re going through and will be able to help.
Kindest regards
Patient
I am sure your doctor will help out.
The most recent guidelines issued by EULAR and ACR recommend that NSAIDs are NOT used for PMR. in preference to steroids.
It sounds as if you have taken your info from an old source. Steroids are not the only option for GCA and PMR - in exceptional cases a good doctor would consider seeking funding for tocilizumab. And in this case I really do hope that would be on the menu. There are reports of it improving mental health problems so might be safe.
However, I have also had both sciatica and PMR - and believe me, in an acute flare of PMR the pain on movement can be just as severe. Furthermore - sciatica affects legs. Not arms. If Elizabeth is experiencing both arm and leg pain that isn’t very likely to be nerve entrapment unless she is seriously unlucky.
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!
I am not suggesting using NSAIDs for treating PMR. I thought I made that quite clear. Elizabeth has not been diagnosed with PMR and her description of symptoms does not indicate it, but rather trauma to her spine and nervous system. Sciatica refers to pain that radiates down a leg nerve, usually caused by entrapment of that nerve by inflamed muscles in the lower back or buttocks, or by disk compression in the lower back. A similar condition exists for the arms for people who have suffered trauma in the upper back and neck region. Seeing both is common in patients who have been involved in traffic accidents or falls and have suffered damage at several locations in the spinal column.