Zero preds

[meiresonne]

I’m new here, but just wondered if anyone out there is trying to get through PMR without steroids? I’m trying but it’s hard going. Let me know how you’re doing.

[DorsetLady PMRGCAuk volunteer]

Doubt you’ll get many “yeses“ - but plenty of “I tried, but in the end had to take the Pred”.

You need to remember that if the inflammation caused by the underlying illness is not controlled it can be doing a lot of damage to your body that you won’t be aware of - until it goes ‘boom’ - plus untreated PMR can lead to GCA and potential blindness.

From your profile - “After two weeks of taking steroids i had the biopsy. All clear.” -

Doesn’t mean you don’t have GCA, just means the tiny piece of artery sampled didn't show signs, but other arteries could be affected.

[SnazzyD]

Hello. So far, we have not have any resounding successes that I know of. My worry is that your biopsy may well have been one of the significant number of false negatives that are known to occur, and it doesn’t always show up in the eye initially. I echo what DL says, you could be sustaining damage to arteries in the body which may not become apparent until a crisis occurs such as stroke and aneurysms or the aforementioned blindness. Symptoms = inflammation that is not controlled and no amount of determination to tough it out will stop it. I have always looked for alternative treatments for illnesses first but GCA/PMR I didn’t muck about with. I do wonder what your homoeopath thinks they are actually dealing with and if it is inflammation they are treating, whether their plan is working for you if you are finding it hard going. If they have a plan, they had better get their skates on and while they are at it, check their indemnity insurance. Sorry to be so hard about it, but I am concerned.

[PMRpro Ambassador]

I spent 5 years with PMR and no pred and wrote about it here:

healthunlocked.com/pmrgcauk...

And I reiterate what DL says - it isn't as simple as pred bad, no pred good. Long term pain and immobility brings with it other problems as does long lasting low grade inflammation.

[piglette]

I must admit there is no way I would go back to the awful pain I had before pred. In the end I was not even able to raise a spoon to my mouth without intense pain. I took pred and in less than twenty for hours a miracle happened and I was back in the land of the living.

Have you thought about trying pred for a week to see how it goes? It could confirm the PMR or not and you could see if it is worth putting up with the pain. You can always just stop after a week or so.

[Hidden]

Hi meiresonne, you’ve asked how other people not taking pred are getting on…

I experience low levels of inflammation and the occasional very unpleasant flare while taking a non-steroidal anti-inflammatory drug, prescribed by and with the support of my rheumatologist, alongside strict diet, supplements, and fortnightly acupuncture. It’s not been the ‘magical cure’ that some find, at least initially, with pred but it’s my impression - from reading lots of other posts - that over time my quality of life hasn’t proved any better or worse than for many who’ve taken the steroid route, and of course both medications can bring their own serious side-effects.

The search facility will give links to previous discussions relating to your query e.g. healthunlocked.com/pmrgcauk... and healthunlocked.com/pmrgcauk.... There are also pieces of related research and quoted claims by medics via this facility (e.g. healthunlocked.com/pmrgcauk... ) - I’ve personally found that the nutritionist I see privately has been a good support in navigating these sometimes-contradictory sources of information.

I agree that steroids are currently the only safe treatment for GCA, but I’m aware I’m probably unpopular on this forum by being part of the small group of PMR sufferers (apparently around 2½%) who are taking an alternative route. Most people here – for the most part informed by knowledge, goodwill and personal experience – will say ‘take the steroids.’ However (based on accumulated knowledge and research 20 months post-diagnosis, plus the very formative experience of watching/caring for my mum with PMR & taking steroids for 33 years) I’d argue there’s a case for some PMR sufferers not to take pred in some circumstances and it’s not always quite as simple as the majority message on this forum of ‘no pred bad, pred good’.

[PMRpro Ambassador in reply to Hidden]

That isn't what I said - I said "it isn't as simple as pred bad, no pred good". And it isn't.

I do also have personal experience of no pred - five years of PMR with no pred was not a good experience! I didn't dive into pred without knowing what life without it would be like.