Any ideas ?

[Nanny71]

After recent phone call from Doctors saying he wants me off steroids as its been 3 yrs. He now says he might refer me to a Rheumatologist. I am currently on 2.5 mgs and reducing .5 mg monthly. Up to now no interest whatsoever. Dexa scan adrenal test all refused as no need according to him so why would he want to refer me at this late stage? Any ideas 🌺🌺

[SnazzyD]

Perhaps they have good reason but 2.5mg is to be celebrated I would have thought. After all my time on Pred starting at 60mg, once I was that low, they didn’t even mention Pred any more. I’m not sure a hard pressed Rheumy will be thrilled to have you referred for that reason unless you are having lots of flares and yo-yo’ ing wildly. Also, you are still reducing, going in the right direction. I know it’s not always that easy but to them, to all intents and purposes you will be off it in 5 months. Will your referral even come through before then??

The big question though is, are you suffering in anyway, adrenals or PMR?

[Nanny71 in reply to SnazzyD]

Thanks for your reply. All going well at the moment. Fingers crossed. 🌺🌺

[SnazzyD in reply to Nanny71]

oh, doubly strange then. Good though! Perhaps if you see them again, ask what it is that is concerning them at this low level when you are still managing to reduce.

[Mayadill in reply to SnazzyD]

Yes, i wondered that: Dear GP, why have you referred this lady, who appears to be doing well. Unless there are actual causes for concern, I suspect you might get a quiet laugh when the hospital refuses to see you.

[DorsetLady PMRGCAuk volunteer]

Probably to tick a box! Or he’s just ready the book that says PMR only lasts 2 years….

From what you’ve said, can’t see any valid reason to rush you off Pred at this stage… and 2.5mg is not causing any issues in the side effect line.. so I’d be inclined to continue as you are….assuming you are allowed to that is!

And tbh, I’d want a very good reason why not….you’ve proven you can reduce successfully without their input to date.

[Nanny71 in reply to DorsetLady]

Thanks for your reply. Thats what I was thinking. This all came about when I asked for my latest prescription. 🌺🌺

[borednow in reply to Nanny71]

Here in my village we are experiencing great difficulties with our GP's. We have also noticed that patients are being referred to Specialists as soon as possible which obviously reduces the work load of each GP considerably. I wonder if your GP is going down the same road?

[Hisue in reply to borednow]

The GPs in the US do the quick referral to anything a patient mentions now, too. They are schooled in how to avoid lawsuits & the specialists are often colleagues that appreciate the business/$$$.🥸

[PMRpro Ambassador]

Wants to get a reality check - by any standards 2.5mg after 3 years is an excellent result, Professor Dasgupta, formerly of Southend and a world name in the field, told us 3 years ago that he often keeps patients at 2-3mg longer term as it reduces the rate of relapses.

And anyway - it is adrenal function that will be as much the limiting factor now although 2.5 is loads to keep low activity PMR under wraps.

As Snazzy says - I'm sure an overloaded and hard pressed rheumy department will be delighted to have a referral for a patient at 2,5mg with no problems and still reducing. SOme hospitals will refuse to take you on.

[Nanny71 in reply to PMRpro]

Thanks for reply. My doctor hasnt got a clue about PMR but thank goodness he did recommend this site to me . 🌺🌺

[Rachmaninov2 in reply to Nanny71]

My original rheumatologist recommended this site, although the current one disagrees with advice given here regarding tapering. 🤷‍♀️

[Flivoless in reply to Rachmaninov2]

He doesn't agree with thousands of suffers who, by trial and error, over many years, have discovered what works and what doesn't? What does tapering does he support? Has he suffered with PMR/GCA so can talk from real experience? Sounds like a textbook expert to me. Get rid.

[Rachmaninov2 in reply to Flivoless]

Unfortunately I am having to go against his wishes at the moment and will be discussing the present situation with my GP (who also wants me to reduce, but hasn’t specified by how much) on Thursday.

Suggested Pred. reduction.

[PMRpro Ambassador in reply to Nanny71]

That's ALL he needs to know!!!!!

[borednow in reply to Nanny71]

My doctor warned me off it - thank goodness I ignored him!!

[SheffieldJane]

I think you are doing rather well and would be inclined to do more of the same.

[Nanny71 in reply to SheffieldJane]

Thank you 🌺🌺

[Bcol]

That does seem a tad illogical given how well things are going. Are you able to tell him you don't want to be referered and are happy with the way things are going. I've been on 2.0mg for a few weeks and have no intention of dropping another 0.5mg for a few weeks yet.

[Nanny71 in reply to Bcol]

Thanks for your reply. Yes I did say I didnt think I need it at this late stage. He seems to think I enjoy being on steroids.🌺🌺

[borednow in reply to Nanny71]

What a tw*t" !!!!!!

[piglette]

Did he mention to the PMR that it is now going to be ignored and no more nasty steroids, so it can run amock if it wants?

[Maryis80]

I was diagnosed 6years ago and am now on 1mg pred per day. Rheumatologist who I now see NHS when he gave up his private practice says to reduce to 1mg every other day in August and see how it goes. However he wants me to stay on leflunomide until I am off steroids. Seems to know what he is doing and was very interested when I gave him the last newsletter from PMRGCAUK

[DorsetLady PMRGCAuk volunteer in reply to Maryis80]

I’d be inclined to go to 1/2mg a day rather than alternate 1mg/zero - but it’s up to you…

[Maryis80 in reply to DorsetLady]

He did say could do half a day if I wanted. Will see how I get on with cutting them!

[DorsetLady PMRGCAuk volunteer in reply to Maryis80]

Easy with a pill cutter - widely available.. and always think this way is easier on body than the alternate day form of reducing….

[Iamfedup]

You are doing great, bang on target. Doctor hasn’t a clue !!!!!

[tempusfugi]

I sometimes wonder if there has been a huge increase in PMR patients recently and that there has been a general missive within the NHS for GPs to tell patients to stop Pred or reduce as quickly as possible, without any thought of the dangers to the patient. Probably not, but one does wonder. From what I read on the forum sometimes, it simply makes no sense, as in your case Nanny71. Can't imagine what the Rheumatologist Dept will think!