Tapering

[ali5son]

Was diognosed June 2017 have been tapering using dsm from 20mg since then got to 31/2mg then started to ache and Gp suggested that I go back up to 4mg which was fine. Gp also referred me to rummy and he want me off pred and prescribed me Naproxen 500mg x2 a day and they now want me to tapper 1mg pred a month. Really scared that I will relapes after all this hard work

[Mary63]

Madness! I’m sure you know from all the info on this forum that approach won’t work. You are on a very low dose, so to my mind what’s the worry? What a shame GP referred you, because now GP is going to want to follow rheumy’s advice.

Someone else will come along soon with information from renowned expert rheumatologists. Perhaps you could show that to your GP?

Good luck...

[ali5son in reply to Mary63]

Thanks

[DorsetLady PMRGCAuk volunteer]

Oh dear,

They/he obviously belong to the “PMR only lasts 2 years” brigade! Not sure how you combat that other than try and explain it doesn’t and there are studies to prove that -

rheumnow.com/video/dr-kathr...

If you’ve flared when only reducing at 0.5mg per month what does he think is going happen tapering at 1mg per month! I don’t follow the logic of that!

Obviously he doesn’t think you have PMR any longer - so what does he think you do have? Will be interested to hear what the Naproxen does for you.

I suppose you can but try his way, and prove him wrong, but I do feel for you.

[ali5son in reply to DorsetLady]

He said I was to young to have PMR will be 60yrs old next month. I understand that Gp don't always look for PMR when you in your 50s but was very lucky to be diognosed after a few months was text book case and did seem to be tapering although slow but good progress until recently.

Thanks

[PMRpro Ambassador in reply to ali5son]

What tripe! Over 50 has been the age range for years - and NICE seem to have brought it down to 40 now. You need someone who knows something about PMR!

[DorsetLady PMRGCAuk volunteer in reply to ali5son]

Echo PMRpro’s words!

[Hidden in reply to ali5son]

If 57/58 was too young there are lots of us in here that obviously don't have pmr according to your Dr.🙄

[PMRpro Ambassador]

I would go back to your very sensible GP and ask him to continue to manage you. The rheumy is a dinosaur in terms of PMR facts.

medpagetoday.org/rheumatolo...

says pred management for PMR has a median duration of 5.9 years and the individual figures are listed as

"Only 19% of patients discontinued glucocorticoids by 1 year after the onset of PMR, 37% discontinued by 2 years, and 50% discontinued by 5 years. Only 58% discontinued glucocorticoid use by 10 years after disease onset. "

There are almost no long term adverse effects due to pred that wouldn't be found in a similar age-matched poplation not on pred. And at 4mg you must reduce slowly - less than 1mg per month to allow adrenal function to return without problems.

[Mstiles in reply to PMRpro]

They are asking for membership and passcode to see the article?

[PMRpro Ambassador in reply to Mstiles]

Register - it should be free

[Mstiles in reply to PMRpro]

Thanks PMRpro

[ali5son in reply to PMRpro]

Went back to Gp with PMR magazine where it said that 1 to 3 benefit outweigh effects of pred but her still encouraging me to reduce. Bloods taken at hospital at Rumy appoint but still not been sent to surgery so will not start to go down again until see results. Still work job share 2 12hr shift and have been working short staffed for few month so was unsure if this was contributing

[PMRpro Ambassador in reply to ali5son]

It probably is - we know that those who have to work do tend to need a higher dose of pred to sompensate for the extra activity they must do. You MUST find someone who knows what they are doing or you will end up with a flare and unable to work.

[ali5son in reply to PMRpro]

That's what scares me that was why I thought that going to Rumey would help. After my 2 shifts I am so tired takes me few days to recover

[Hidden in reply to ali5son]

The rheumy I see has left me at 6mg for a year so far...diagnosed 55yrs, DX 39mths. So not all rheumies are bad news.

[ali5son in reply to Hidden]

I contacted support group and they advised that there was a very good rhumy at a hospital nearer me got bone density scan next week. I take HRT so hopefully if all OK they will leave me alone to manage my pred which I feel being doing OK these past 2 years. If not will see if I can get second opinion not want the hard work of past 2 yrs to be invain

[Hidden in reply to ali5son]

I always say I prefer a Dr that ignores me than one who is at me to reduce. It is hard mentally when you are tapering. Constantly wondering if the drop will go ok and waking up stiff and thinking oh no. Then finding its just natural aches and pains. What I have enjoyed this past year is feeling reasonably ok PMR wise and feeling even better that I have had no tapering stress. It would be nice if you could give yourself a few months at the dose you are on to enjoy life a bit!!

[ali5son in reply to Hidden]

Totally agree

[Jackoh in reply to ali5son]

Agree with all you have said. Find someone who knows what they are talking about. If it is a recommended Rheumatologist all the better. You don’t want all your hard work undone. I had to go privately in the first instance to get a better appreciation of where I was at. I then transferred to his NHS list. Nightmare!! 😱All the very best. Let us know how you get on.

[ali5son in reply to Jackoh]

Thank you

[Christophene]

I am not a fan of Naproxen; it will do nothing for any active PMR; it can cause terrible stomach pain ; I had to go to emergency room twice to get relief with IV Pepcid. In my own case, I was allergic to it manifested by a skin blistering problem; that doesn't mean you are allergic, but it is not a benign drug. It can also cause stomach ulcers . I would refuse. There has been a lot of talk here about the rush of doctors to taper. 500mg x2 is enough to get you in another sort of trouble.

[ali5son in reply to Christophene]

Thanks for update on Naproxen

[Cross-stitcher]

I, too, have had stomach problems with Naproxen even when taken with a PPI (Omeprazole). I have no problems with Ibuprofen, nor with Meloxicam (although neither reduced my original PMR pain by much). However, I know several people who have taken Naproxen with no problems for several months after serious sports-related injuries. My GP uses it as a first-line approach to severe pain. "If it works, it works well and is cheap" she said. But she acknowledged that many people can't take it and was happy to switch me to a different NSAID within 2 weeks, until eventually I got the dx of PMR and all NSAID's were stopped in favour of Pred. I think I am fortunate to have a sympathetic and knowledgeable GP !!

[Bern435413]

Just to chip in, I too had a bad stomach reaction to Naproxen prior to my diagnosis and ended up in hospital with pancreatitis. Pred hasn't given me any stomach problems so far, down to 4.5mgs from 15mgs last October and using the DSNS method of tapering.

It would be such a shame to undo all your careful work - I would dig my heels in and continue as you were.