All in my mind, apparently!!!

[Prof99]

I’d be most interested in opinions on this. Had a telephone conversation with my Rheumy a few weeks ago, which was 9 months since the last one – in a year when I had experienced considerable stress in Health, Work and Bereavement. I explained that I had tried to reduce the 20mg Methotrexate dose to 10mg (as per his suggestion) but very quickly felt the consequence, and along with a couple of flares this year, had not managed to get off Pred completely, which he is VERY keen for me to do.

When I told him I was reducing Pred by .25mg every 6 weeks but always had 2-3 weeks of pain when doing so, he said that shouldn’t happen at such a low dose. When I pointed out that 0.25mg was still more than 10% of 1.5mg – he dismissed that comment.

My Rheumatologist finished his last letter to my GP saying "The flare of symptoms after 4 days of reducing Methotrexate and the worsening of symptoms after fractionally reducing the current dose of Prednisolone 1.5mg are not physiological responses" To me, this reads ‘It’s all in her mind’!! I’d be most interested in everyone’s comments on this. I now have a Face to Face appointment with him in 3 weeks. - it will be interesting!

[SheffieldJane]

I hope someone articulate responds. I feel too weary 😩. You are right !

[DorsetLady PMRGCAuk volunteer]

When I told him I was reducing Pred by .25mg every 6 weeks but always had 2-3 weeks of pain when doing so, he said that shouldn’t happen at such a low dose.

Perhaps in the textbook it shouldn't happen ..but that doesn't mean it can't happen nor that it doesnt!

Just because your PMR doesn't fit his ideal, doesn't mean it's not PMR... he needs to get out more!

Good luck with the F2F...

maybe he should look at this as well - 5-6 years is mention as time required for steroids in PMR

youtube.com/watch?v=6XowN2y...(Not working as expected?)

[Prof99 in reply to DorsetLady]

Thank you Dorset Lady - I have always felt he is very 'text-book' and been quite dismissive of anything that I report that doesn't sit with his one size fits all approach' . I have a blood test a week before my appointment - so I am considering making another .25 drop without tapering and see how I feel and see if my blood results show any effect. I would actually be delighted if he is right but from everything I have read on this forum, I am dubious.

[DorsetLady PMRGCAuk volunteer in reply to Prof99]

Might be interesting to see what affect an ‘overnight’ reduction has compared to a slow taper…. But to be honest no matter how you get there, if the dose is too low, it’s too low!

As we hear all too often, some Rheumies are keen for patients to get off Pred [and surprise, surprise so are the patients] but if the PMR is still alive and kicking, no can do… 🤨

[Travisdecember in reply to DorsetLady]

Thank you Dorset Lady for this! Amazing this research was published 6 years ago and the message has not gotten out there! I have tried to find the research that Dr Dao mentions (by Dr Scott Matheson at the Mayo Clinic) but no luck so far. Has anyone found this - could you share a link if you have?

[DorsetLady PMRGCAuk volunteer in reply to Travisdecember]

Actual it’s Eric Matteson MD - thought I had it saved somewhere, but can’t find it at the moment, so I’ll have another browse… but if I can’t find it I know someone who will be able to… so be patient…

[PMRpro Ambassador in reply to DorsetLady]

medcentral.com/rheumatology...

Link to original work under Sources at the bottom.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Thanks…..

Travisdecember see reply from PMRpro….

[bunnymom in reply to DorsetLady]

Going into 7 years now at two I find this very encouraging especially concerning the fracture rates. I’m going to try quarter tablet reduction but not until I return from Xmas travel. Reductions make me so tired.

[DorsetLady PMRGCAuk volunteer in reply to bunnymom]

Reductions make me so tired.

At such low doses that might be adrenals struggling s much as PMR…and agree no reducing until new year.

[Merryfield]

my response is “whaaaaa?”

[PMRpro Ambassador]

Not physiological responses? Really? As a physiologist I'd disagree ...

[Nosmell]

It’s so hard to balance Preds with PMR isn’t it? My neurologist isn’t pushing me to decrease as quickly as possible, thank goodness - I waver between 9mg and 7mg - any less and my symptoms reappear. I hope your face to face apt is positive - I can imagine how you felt on reading that opinion. Take care — I’m not sure that I’ve been any help at all. ❤️

[Boss302Fan]

Been there and been through that, so you’re not alone in that respect, it appears often Rheumys’ don’t stay abreast of PMR as they do, say, RA.

The benefit of a smaller dose reduction and using DL Simple Taper is AI symptoms are minimized, if they occur at all. Also, if the decrease puts you below the PMR activity level the flare is less intense and doesn’t require as large a temporary increase, ie., resultant inflammation is less severe. I refused to decrease my dose if already was feeling pain related to PMR. To decrease under those circumstances doesn’t make sense, that’s an indication your current dose is already too low.

You need to be your own advocate, you know how you feel. I’d suggest putting the Dr Kathryn Dao video on your phone and showing it to your Rheumy, if he refuses to watch tell him you are the client and paying for his time! Also, wouldn’t hurt to download from this site the findings mentioned by Dr Dao as well as other more recent papers and give him printed copies. It’s what I did. Do what’s best for you, deal with the Rheumy later.

[Flutterbies57]

The font of all knowledge eh ? He can read minds . I would not waste my time seeing him .

[Rozzyt]

I have been reduced to 2 Steriods a day for November and continue through to end of December. Experiencing lots of discomfort, especially from left shoulder to hand and fingers, lots of tingling in my fingers. I aim to be off Steriods by end of February which will be just over 2 years since starting on Preds, 15mgs to start with then tapering. My aim is to take ibuprofen as in the past it really helped reduce the inflammation to much comfort. Haven't seen a rheumatologist for about 8 months, don't see the point of talking as it doesn't help to make pmr better. He was keen for me to raper quicker but I have tapered very slowly. I feel better than later year.