Encouraging Heartwarming News!

[diana1998]

A friend of my good friend was diagnosed with pmr in June 2020. An ignorant GP put her on 10mg over the phone. She's a widow with her only daughter in Hong Kong so little support. She was in terrible pain all over. Couldn't get upstairs to bed, slept in chair etc. I was able to advise her from the forum and told her to insist on 15mg and push hard on phone calls to dr. She's never been seen. 15mg worked, no pain, back dog walking etc. 15 months later she's just texted to say she's off pred and weight she put on has disappeared. She was very grateful for the help I was able to give her and I'm thrilled for her. Hoping she doesn't relapse as seems amazingly fast. Drs seem to be advised to start patients off at 15mg now whereas I went on 30mg 5 years ago diagnosed by rheumies in A&E and even this didn't work until I learnt from the forum re splitting the dose. Guess it's horses for courses. I've given up ever getting off steroids as I feel sick and ill below 3.5mg altho no pain. But I only need pred and Adcal so must be grateful for that! Have a good weekend everyone😊

[DorsetLady PMRGCAuk volunteer]

The advice for starting dose has been between 12.5mg to 25mg for a long time, some doctors like as low as possible (sometimes works, sometimes doesn’t), but have to say your 30mg was quite high….assuming there was a good reason for that.

As for you now, does sound suspiciously like your adrenals are struggling, perhaps you should ask for them to be tested - maybe have a read of the articles (3 in total) on adrenals in FAQs - healthunlocked.com/pmrgcauk...

Hope your friend is one of the lucky ones…

[diana1998 in reply to DorsetLady]

Thank you. Just had sky high inflammatory markers. I was diagnosed by a group of rheumies in Addenbrookes and was there all day. Very thorough. Think my friend so far has had an easy ride. 🤞🤞🤞 I had my synacthen test done at 5mg and the readings then showed I should be able to reduce down ok. But can't put up with nausea and fatigue as I like to be a busy person in a sensible way. It's quality of life isn't it?

[DorsetLady PMRGCAuk volunteer in reply to diana1998]

Yes it is, so perhaps you need to chase it up again, maybe a referral to Endocrinologist if that’s possible.

Or perhaps it’s just a matter of slowly reducing, time and patience.

[diana1998 in reply to DorsetLady]

Nervous re Endo in case they suggest taking something like hydroxychloroquine. I have a friend on that plus 3mg pred. Don't want to add another drug. Must be patient and laid back!! 🐌 🐌🐌

[PMRpro Ambassador in reply to diana1998]

I would be surprised if an endo wanted to put you on to HCQ - a rheumy might.

[diana1998 in reply to PMRpro]

What's an Endo suggest?

[PMRpro Ambassador in reply to diana1998]

I'd expect them to want to switch you to hydrocortisone which tends to stimulate return of adrenal function because it isn't so persistent in the blood stream and its 2 or 3x daily dosing mimics the normal production of cortisol. The only thing that stimulates cortisol production is low corticosteroid in the blood at about midnight. HCQ isn't a reliable means of reducing need for pred - no reliable evidence it does so in PMR at all.

[diana1998 in reply to PMRpro]

Couldn't bear the thought of that. My friend takes that as well as pred. Don't think it's helped her. I will ask.

[diana1998 in reply to PMRpro]

I'm muddling up those 2 hydros. Sorry, got that wrong.

[PMRpro Ambassador in reply to diana1998]

Easily done - they do sound so similar.

[SheffieldJane in reply to diana1998]

Do you mean hydrocortisone.? That’s what mine was keen for me to move too.

[diana1998 in reply to SheffieldJane]

No, she told me in whatsapp (I've just double checked) she was put on Hydroxychloroquine in June 2020 by our mutual rheumie as struggled on 5.5mg. (I last saw him 5 yrs ago, don't need him). She like me got to 3mg this year. Will whatsapp her now and ask her if it's helped. Sounds horrendous in Google. I wouldn't take an add on.... No fear.

[SheffieldJane in reply to diana1998]

A malaria drug that has been found to be useful in Rheumatoid Arthritis, and Lupus amongst other things including Covid 19. I have tried to avoid add ons too but I finally succumbed to Tocilizumab and I’m still not sure.

[diana1998 in reply to SheffieldJane]

Hope it goes well for you

[PMRpro Ambassador]

The wheel is coming full circle again - it was higher, then fear drove it lower, then the 2015 Recommendation said higher was also OK now there is a trend to lower again. And the bottom line is - the lower starting doses sometimes lead to missing diagnoses and extended patient journeys. So we start all over again ...

[123-go in reply to PMRpro]

Certainly a roller-coaster ride for some when the wheels get stuck or the road gets bumpy. Nice to hear success stories though and gives hope.

[diana1998 in reply to PMRpro]

Thank you. Don't think 15mg would have touched my pain. But it's easier to increase rather than come down from a high dose and the side effects for me were horrendous and debilitating. Never mind, that phase is in the past hopefully!

[PMRpro Ambassador in reply to diana1998]

You'd be surprised to be honest - neither degree of pain/disability nor the blood markers truly predict the dose required. I was in a lot of pain and had been for almost 5 years undiagnosed. I had a miracle in under 6 hours - but am still on pred over 12 years on ...

[HeronNS in reply to diana1998]

I could barely move after over a year of increasing symptoms. 15 mg pred worked brilliantly, first glimmer of relief after a few hours, but I think not complete relief until third morning. Still on pred, albeit low dose, after six years.

[123-go]

How fortunate your friend had you to support and advise her. I hope things settle down for you soon.

[diana1998 in reply to 123-go]

Thank you.

[HeronNS]

It really is shocking that people are not being seen by their GP these days. I'm sure part of my doctor determining my diagnosis was based on her seeing how I walked.

[MiloCollie in reply to HeronNS]

Haha. As far as my gp surgery goes my legs could have dropped off!!!

[cycli]

ditto Heron. She'd seen me when cycling fit. Shuffling old man look shocked her.

[HeronNS in reply to cycli]

Doctor who diagnosed me had never seen me before. But I did note that in subsequent visits she would sometimes call me into the office rather than having the receptionist send me in, and she was looking to see how I was walking. I don't know if they teach younger doctors these things but I think there must be a lot of visual cues which an observant physician can use to help pin down a diagnosis. This is why, convenient though phone and virtual visits are, I'm uneasy about them becoming the main way of "seeing" a patient, You may even have something wrong which you don't know is a problem, or a way of moving, etc, which you don't even link to the way you're feeling. For example, I only knew I had trouble climbing steps, or standing up, therefore moving slowly. I did not actually know I was walking like a penguin!

[SheffieldJane in reply to HeronNS]

I remember being embarrassed to walk across the crowded waiting room, bent over and shuffling like a penguin, otherwise looking healthy.