Pmr

[44humphreyst]

Hi. Is there another treatment for pmr besides prednisone? I have heard nothing but bad news about it saying it destroys cells?? If so I will just stay on taking acupuncture treatments which have helped. Another thing is. What do the European population take? Herbs? Other meds? Inquiring minds want to know. Also will pmr last till I pass? [e-mail]

[shella]

Guess it's ok for pmr but not Vasculitis/ I tried it when they thought I had pmr and I could hardly walk after the treatment .... ..I am all for natural treatments but in my experience I needed the steroids .... good luck and do hope it helps you

[Celtic PMRGCAuk volunteer]

Hello Stefan, if you are finding acupuncture helpful then all well and good. But the most tried, tested and reliable treatment for PMR is steroids to tackle the inflammation and get it under control. Please be aware that if the inflammation of PMR is not controlled, among other 'nasties' it can allow GCA/TA (Giant Cell Arteritis/Temporal Arteritis) in through the back door which carries a very real risk to your eyesight. I say this from experience as I had undiagnosed, therefore untreated, PMR for just under a year, and then succumbed to GCA.

With regard to "other meds", Calcium and Vit D are recommended to be taken alongside steroids - in fact a deficiency of Vit D can lead to pain in the body not dissimilar to that of PMR.

With regard to herbs, some can have an anti-inflammatory role, especially turmeric, ginger and garlic, plus a few others. However, care needs to be exercised and doctors' advice sought before taking Boswellia, Liquorice Root extract, and a few others because of potential drug interactions.

As to your last question, it's impossible to give you an exact answer as everyone is different both in how they present with PMR and how they respond to treatment, but PMR goes into remission of its own accord, taking anything from 2 years upwards.

Oh, and by the way, I had PMR/GCA for 5 1.2 years but did not experience it "destroying cells".

[DorsetLady PMRGCAuk volunteer]

Hi,

Certainly Pred does get a bad press in some cases, but it's no worse than any other medication. I think it's unjustly castigated very often, and maybe that's because if you have PMR, or GCA it needs to be taken long term - years rather than weeks or months -so the side effects have more time to develop.

As Celtic says the "destroying cells" comment is not strictly true, what I guess you refer to is the fact it controls the cytokines (proteins) which the body produces naturally every day, and if your auto immune system is not not working correctly, which is doesn't in PMR, those proteins can cause certain cells within your blood vessel wall to grow inflamed and cause the pain and discomfort you feel.

You can take anti-inflammatory foods and supplements, and try alternative remedies which may help the inflammation, but Pred is th only thing that really gets a grip of it.

As Celtic also says, if not controlled it can lead on to much more serious complaints - many people are virtually bed bound until they are diagnosed and take Pred.

I had undiagnosed GCA for 18months which was only diagnosed after I'd lost the sight in my right eye. I'm not saying that will happen, but it's a possibility - are you willing to take that chance?

If you only have a mild form of PMR you my get through it without too much problem, I'm sure many have in years gone by, and good luck if you try, and if course it's your choice, but do be aware of the consequences if you dismiss Pred completely.

[PMRpro Ambassador]

Are you sure you want to have your email address on view in the public domain? Anyone can see it.

No there isn't an alternative to pred for PMR as yet - and the only likely alternative is still on a distant horizon unless you are in the USA where some doctors are using it. However - as a biologic drug it is far more "invasive" than pred which merely mops up the inflammation while this new drug will actively alter your immune system. Pred does not "destroy cells" so I have no idea where people got that idea from - if you go on many internet sites you will find some totally unjustifiable and unproven claims about most things and I suspect that is one of them.

"What do the European population take?" - as a resident of mainland Europe and fully converse with German language rheumatology texts and having friends in both France and Spain with PMR, I can tell you we ALL take a corticosteroid. Here it tends to be prednisone or methylprednisolone while in the UK prednisolone is used - but prednisolone is the active form and must be produced in the liver from the prednisone so there is no difference really.

If acupuncture helps and you can afford it then fair enough. But it may be a very long story - I've had PMR for 13 years! But it isn't just a case of pred bad, no pred good - the unmanaged inflammation in your body without pred increases the risk of developing other vascular illnesses and even some cancers.

[Augustus-6 in reply to PMRpro]

Have you taken pred for the whole 13 years? I take 5mg alhough i increase with flares and i had a bone scan which was ok 😄 Have you suffered any side effects?

[PMRpro Ambassador in reply to Augustus-6]

No, the first 5 years was PMRnopred! I had normal bloods and they couldn't think laterally! So I've been on a steroid of some sort for 8 years now. I was on prednisolone (in the UK) for a couple of years with no problems at all - except the PMR-related weight gain redistributed itself to the usual places. Then I'd moved here to Italy where you don't get prednisolone, they use methyl prednisolone (Medrol) - I took if for about 9 months and it was utter hell - muscle atrophy, skin and hair went mad, massive weight gain (became totally Cushingoid) and grew a lovely black beard. Then my GP switched me to Lodotra (a time-released form of prednisone) and all the side effects reversed and with a low carb diet I lost about 35lbs in weight - all I had put on with steroids and some of what I had put on with PMR. I have no significant change in bone density, no sign of diabetes, cataracts or raised eye pressures.

I did get below 5mg a couple of years ago and then had a flare in January last year and had to go back to 15mg. Just scraping by on 6mg now - but fatigue is being a problem at times.

[Augustus-6]

Thank you thats interesting ive been told its bad for the heart and im now getting angina

[PMRpro Ambassador in reply to Augustus-6]

It doesn't stop other things - and angina happens! I have atrial fibrillation - due to the autoimmune part of PMR. Uncontrolled inflammation is also bad for the heart - so you could also say that the pred is good in that sense.