Living without medication

I have been suffering the symptoms of PMR for the past 4 to 5 months and the joint pain in my shoulders has been gradually worsening. So, I'm off to my GP on Tuesday to see if I can get an official diagnosis.

I'm concerned that he is going to suggest medication with prednisone. As this doesn't cure PMR but only alleviates the symptoms I am wondering if the trade-off with the risk of side-effects is worth it. From what I have read on this forum everybody seems to have taken the prednisone and are at various stages of dose reduction to try and eventually come off it.

Having searched the forums I can't find if anyone has endured PMR without medication. If it is possible to tolerate the pain, inconvenience and limited range of motion then will the symptoms disappear at some point anyway? Or, does the duration of the condition simply make the long-term pain unbearable?

I welcome your thoughts and advice on this.

13 Replies

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  • Fancy that, despite my searches and finding nothing I now see a really useful "Related posts" section at the top left of the page. About to read those related posts now. Any other advice still welcome.

  • I'm new to all this, having only been on prednisone for a fortnight, but the impression I get is that pred is the only real surefire way of dealing with it. Having said that, like you, I have been searching for alternatives. A friend of mine with similar chronic pain issues has been using cbd medication with great success and no side effects. It is derived from cannabis(with all the psychoactive ingredients removed) and is apparently good at reducing inflammation. I'm happy with pred at the moment because it's doing the trick with no apparent side effects. However, if I start getting side effects I might investigate the cbd route further. Very little on the Internet about cbd and pmr so, without wishing to hijack this thread, opinions from others would be welcome!

  • Hi Jontie

    Recently, my friend in the USA (I'm in UK) suggested I might benefit from CBD oil (Cannabidiol). Apart from availability, I imagine my GP would be sceptical, as I am.

    I would also be interested to hear of anyone else who's tried it.

  • Several people on another forum have said CBD oil eased their pain somewhat....the type that comes with tapering it seemed.....I am trying it for chronic abdominal pain but haven't noticed any effect....I have also tried medical marijuana prescribed by my doctor but again no effect on pain....would also like to hear of other's experiences....

    Cheers

  • I would like to try CBD oil and am thinking of asking my doctor about it next visit. I'm sure I can get it on prescription, but I am not sure if all doctors are permitted to prescribe it. Reading about it, one wonders why it's so hard to get, considering how dangerous some of the medications are which are quite freely prescribed. ncbi.nlm.nih.gov/pmc/articl...

  • I'm in Canada too HeronNS, Ontario....I think any dr can prescribe medical marijuana, it was my GP who did so for me ....but the CBD oil has none of the psychoactive components and can be ordered online, Amazon I think for example...mine comes from a neighbour who works at a medical marijuana company....maybe I need a higher dose, takes some experimenting probably....

    Cheers

  • Hi manxbiker,

    When you've read through other posts, you will probably come to following conclusion - quite a few hardy souls do try all alternatives to allievate pain before succumbing to steroids.

    The main point really is not the pain, debilitating as that might be, but the damage the inflammation caused to your blood vessel walls by the underlying PMR or GCA. That in essence restricts the flow of blood to either your main muscle groups in the case of PMR therefore denying them the energy, food they require to function properly, or in the case of GCA to your shoulders, torso and head. The effects then can be more devastating- strokes, aneurysms and sometimes blindness if the optic nerve is affected.

    As you rightly say Pred does not cure PMR, there is no cure, it's a matter of controlling the inflammation caused by the underlying illness until it burns out, go into remission or whatever.

    At present, steroids are the only medication that does that job.

    So if GP diagnoses PMR for sure then suggest you take his advice and swallow the pills!

  • While now I count amongst the people who take pred, for the first 5 years I was not on pred. Not out of choice but because the GP didn't recognise it and assumed, wrongly, that if a patient's blood looks normal - there is nothing wrong. Eventually I worked out for myself what it probably was and 15mg of pred wreaked a miracle in well under 6 hours.

    I was fairly lucky with my untreated PMR, I was stiff and very limited in what I could do but for most of the time I managed. I went to the gym every morning and did an aquafit class in a warm pool - the only exercise I was capable of, and what kept me reasonably mobile. I'd had to change gym to one with a pool as everything else had become next to impossible. I gained weight. I was in constant pain - and had to give up a lot of things. If I couldn't drive there I couldn't go and public transport was a nightmare - I couldn't even step up onto the bus or train. I crawled up stairs on hands and knees. I was self-employed as a translator - I had to fall out of bed (literally) and if I didn't get dressed before staggering to the computer it didn't matter. I could plan my own day - and lie down and sleep if I needed to. I couldn't have worked in a "proper" job.

    Then I had a major flare - I could barely get out of a chair and toileting myself was almost impossible. At the same time I had to stop driving because of another suspected incorrect diagnosis and that was it - I couldn't walk to the end of the road to the bus stop much less go anywhere. I was dependent on others - and cut off from all my friends who lived a fair way away. We had recently moved and I could have the computer and a bathroom or I could get at food and drink. The stairs were hell in either direction.

    Doctors will often tell patients that PMR burns out in a couple of years. Possibly for 25% - and they remain at an increased risk of a relapse. About half take up to 4 to 6 years to get off pred and the rest, amongst whom there are several on this forum alone, take pred for even longer. I have now had PMR for 13 years and counting. Another has had it for 16 years. There is no way you can know in advance which group you will belong to.

    And as DL has said - it isn't just the symptoms you see. The unmanaged inflammation in your body does damage all over - increasing the risk in the long term of cardiovascular disease and even cancers. It isn't simply "pred is bad", "no pred is good". It is far more complex than that.

    You can do a lot by adjusting life-style and many find that eating an anti-inflammatory diet helps them manage on lower doses of pred. But it doesn't cure and it can't be guaranteed to get you off pred sooner. What you can achieve with diet is to reduce the risk of weight gain and developing steroid-induced diabetes - by cutting carbs drastically.

    The dose reduction isn't merely to get off pred altogether - it is to identify the lowest dose that manages the symptoms for the longer term, you reduce in small steps until the symptoms poke through again - then you go back to the last dose that worked and wait a bit before trying again. You always keep trying to reduce a bit further or you would never know the underlying cause of the PMR has gone into remission - which, as I said, happens for 75% of patients in something up to 6 years. You only know you have got there when you get to zero pred and no PMR comes back. Even 1mg may be the difference between being OK and not - maybe it is placebo, but believe me, no-one WANTS to be on pred!

  • I think a lot of us diagnosed with PMR think I wonder if there is an alternative to steroids. Steroids are actually a wonder drug, unfortunately with side effects, and can have a magical effect on the pain caused by PMR. I could not even raise a spoon to my mouth without intense pain and within twenty four hours I was actually able to get back into the land of the living having suffered over several months.

    You can always try prednisone for a few days and see if it works, if not you can just stop taking it, as you probably do not have PMR anyway. There is no need to taper if you have only taken it for a week or so. Personally there is no way I would go back to the debilitating pain without pred.

  • I often feel the occasional flare is not a bad thing - it reminds you why you take pred!

  • Indeed. Couldn't agree more.

  • Thank you so much for all of your comments, especially those that have gone to a lot of effort to give me the benefit of their experience and thoughts. I certainly have a lot to think about now and based on your help am more open to the suggestion of taking pred than I was before. Off to the the GP in the morning so will take all your thoughts with me and discuss my options.

  • I also hesitated and worried a lot about taking steroids - but the benefits and relief after a couple of months have been truly tremendous. I realise in the longer term issues with side effects may well arise but many of these can be addressed with careful management - and in the end there is this thing called 'quality of life' which is obviously is no small thing - pain is itself exhausting, depressing and plain horrid - so I have decided to risk the potential trade offs. There is also as DorsetLady and PMRpro point out the serious damage untreated inflammation can do over time. But this forum is itself a great confidence booster when making this tough decision and utterly invaluable.

    Good luck whatever you decide to do.

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