Million dollar question

[Gaz227]

I saw my Rheumy yesterday for the last time as he discharged me back to my GP . I am down to 1 mg pred from 20mg over a 2 year period . The last couple of reductions have crusified me , I have been using the anti-inflammatory pain killer Arcoxia 60mg on the really bad days and it does work well . I asked the Rheumy if I get off pred but still have pain do I carry on with Arcoxia . He said that's the million dollar question , is it better to stay on a low level dose of pred say 1or 2 mg potentially for life that could cause osteoporosis , or take an N-said that could potential cause a stroke or heartattack with long usage. He said 5% of PMR sufferers never get off pred and need a tick over dose to stay pain free and lead an active life . Anyone else been in this situation, feel like I've come so far then been told there is no finish line , depressed me a little to say the least .

[Maisie1958]

Hello, Gaz227.

No advice sorry, but read your post with great interest as I am also trying to reduce from 1mg Pred daily after 2 years. Not so much of a problem with pain fortunately but still feel rather weary/Fluey. Thinking back I'm definitely 100x better than 2years ago and at least 10x better than last year but don't feel the PMR has gone completely or is this the new normal that Pred isn't doing anything for anyway? Wondered if you still felt the tiredness as well as pain? I agree it would be lovely to get over that finish line. It does seem to keep moving but I guess at least we've managed a few glimpses of it now. I'm going for long term low dose of prednisolone rather than regular nonsteroidals if needed.

All good wishes, Irene

[Gaz227 in reply to Maisie1958]

Thanks Irene , there are so many ups and downs on this journey , sometimes it's nice to know others are in the same boat if you know what I mean . Good luck with your final reductions and keep us informed how it goes . 😀👍

[Maisie1958 in reply to Gaz227]

Good luck to you too Gaz227. This forum has been such a help to me with practical and moral support over the last couple of years. Thank you everyone x

[DorsetLady PMRGCAuk volunteer]

Hi Gaz227,

If the last few reductions have "crucified" you then I would suggest your PMR is still alive and kicking, and therefore you need to stay on it - at least for the time being. That doesn't mean you'll be on it forever, another 6 months down the line you may be in remission. No-one can say for sure.

If you have to stay on a maintenance dose for life, so what, below 5mg there is little in the side effect line, and many of us are on medication for life for other illnesses - it's a fact if life!

I'd rather be on a small dose and pain free, fortunately I'm not, but they are many on here who are, and I'm sure they'd say the same.

You may be dispirited at the moment, but they are a lot worse things than PMR, so please look at it in that light.

[Gaz227 in reply to DorsetLady]

Thanks Dorset lady they are reassuring words , I needed that thanks again , I will keep my chin up , it's been a long painful road 👍😀

[DorsetLady PMRGCAuk volunteer in reply to Gaz227]

I know, big don't spoil things right at the end. I'm sure if you've got this far, you will reach your ultimate aim. But as always slowly, slowly,catchy monkey!

[Gaz227 in reply to DorsetLady]

😀👍

[HeronNS]

Right at the beginning my doctor said that she has patients who keep a supply of 1 mg tablets on hand in case they need them. At the time i didn't even know pred wasn't a cure, but now I understand the wisdom of what she said, and fully expect that I'll be one of those patients. I think as the need for the little top up diminishes the frequency reduces and eventually one wakes up and discovers that pred really is no longer needed.

[Gaz227 in reply to HeronNS]

I really do hope so 😀👍

[PMRpro Ambassador]

If anyone told me I had a choice between taking Arcoxia and up to 5mg of pred I would plump for the pred any day. At that dose the side effects are minimal - and to quote osteoporosis at you as a risk was a trifle silly IMHO! Bit late for that - and I assume you have had dexascans done in the past? You should have had one done at the outset and one every couple of years. Arcoxia is not approved by the FDA in the USA - which to me poses the question: why is it approved anywhere else? It has some hefty side effects of its own.

I have been on pred for the last nearly 8 years - and briefly got down to 4mg once. It took 4 years to get below 9mg. My bone density had barely changed in 7 years, at least 5 years of it at above 10mg. I have no sign of diabetes, cataracts, I gained weight and lost it again or any of the other pred side effects they are so determined everyone will develop.

If a low dose of pred manages your symptoms then I would choose that. But I do have to ask - is it PMR if the pain is managed by Arcoxia?

[Gaz227 in reply to PMRpro]

Hi PMR pro . Yes I did have a dexa scan about 12 months back and bones where fine , I asked the same question about is it PMR the fact that Arcoxia works so well on me and to be honest it was like trying to get a yes or no out of a politician , I don't think they really know but all I do know is Arcoxia really does take the pain away. I am going to try and get off the Pred over the next 3 or 4 months but I won't jeperdise my quality of life , if the pain is just to much I will take a couple of mg's of Pred and see how that feels rather than keep dropping the N-saids every other day . Thanks for your help and interest , will let the group know how it goes just incase it helps others in similar circumstances 😀👍