hydrocortison anybody ? And Correct provisional diagnosis is everything.

[Kaaswinkel72]

after 7.5 years ( 72 years) on various dosis of prednisolone for PMR, I was fortunate enough to meet a rheumatologist ( second opinion) who told me “I now do not have PMR (???what !!!) “ .She stopped the prednisolone and gave me hydrocortison “ to wake up my adrenal glands” to build off over several months, is the plan.

because I fully trust her , I accept her diagnoses , and treatment plan and for the first time in 7.5 years I now don t have PMR.

Call it identity crisis. All that time PMR lived me, not any more.

i am now 3 weeks on 20 mg hydrocortison and honestly: so far so good.

Yes, early days I tell myself too.

I try to find “ posts” regarding hydrocortison of others and am unable to trace them on our forum/ or on frequently asked questions.

Can anybody tell me where I can find those posts and/ or respond to my post, thanks.

[Charlie1boy]

Hi,

Try reading the article on page 12 of the Winter 2024 edition of Newswire. Written by Dr Sarah Mackie. All about hydrocortisone.

I’m pretty sure you can get it online if you haven’t got the hard copy.

[HeronNS]

FYI 20 mg hydrocortisone is equivalent to 5 mg prednisone. I think hydrocortisone is prescribed because it's easier to titrate down to a lower dosage. Please be cautious as 5 mg pred, or its equivalent, is sufficient to be controlling all your PMR symptoms, should the disease not yet be in remission. (My personal experience is that 2 mg was enough for several years, sometimes even lower, but PMR was not yet in remission.) You are the only person who will truly know when PMR is in remission, and that will be when you have successfully been off all cortisol treatment for a few months. Fingers crossed the doctor is right!

[PMRpro Ambassador in reply to HeronNS]

Not so much the titrating down but the fact it remains in the body less time - why it is dosed 3x daily and why it is less good at managing the inflammation plus it is far less anti-inflammatory - and that means there is more time in the body without the steroid that suppresses the production of cortisol.

[HeronNS in reply to PMRpro]

Hence it encourages the adrenals to start waking up?

[PMRpro Ambassador in reply to HeronNS]

Supposedly - though I do wonder if encouragement is a bit optimistic!

[DorsetLady PMRGCAuk volunteer]

This is a recent post on hydrocortisone- and the system usually brings up related posts but for some reason hasn’t -

healthunlocked.com/pmrgcauk...

[HeronNS in reply to DorsetLady]

I just checked a couple of other posts on different subjects and it seems that function is awol at the moment!

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

Initially I wondered if it was because I’m in NZ at moment - but then checked others like you.

Will give it a while and then nag if it doesn’t sort itself out..

[HeronNS in reply to DorsetLady]

I bet it's lovely in NZ at the moment. Will it seem strange having long days at Christmastime? We spent Christmas 1999 in Spain and the warm weather was disconcerting, but it was still northern hemisphere so we weren't too discombobulated.

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

Not brilliant at the moment -bit overcast -but when sun does come out -it is warm… 😎

[HeronNS in reply to DorsetLady]

Only time I was in NZ it was spring in one hemisphere and autumn in the other, so days about the same length, and temperature quite similar. What confused us was the sun being in the "wrong" part of the sky

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

Totally agree about the sun! But at least they drive on the same side of road as UK … so you know which way to look!

[HeronNS in reply to DorsetLady]

Of course that wouldn't help us!!! Fortunately we weren't driving.

I remember the first day in the hotel before we went out I said we should close the curtains to stop hot sun from pouring in all day. Of course when we returned I discovered that the sun had gone around the other side of the building! Our days in Wellington were the first time I ever saw my husband stumped by directions. One afternoon a schoolboy saw us looking very puzzled as we tried to figure out which way to walk, and he set us right in no time. It was the first time I bcame consciously aware of how much we use the sun to fix ourselves in our location.

[Charlie1boy in reply to HeronNS]

That is exactly what we felt when we visited New Zealand. We were there in November 2001!

[HeronNS in reply to Charlie1boy]

We were there in the late 90s. Left a house full of teenagers minding the home front. Now they're all middleaged, we're going downhill (and picking up speed) and yet I still remember our week there as a real highlight in my life.

[Charlie1boy in reply to HeronNS]

One of the best holidays we ever had.Three weeks all over NZ with the British Clematis Society, and then a one week stop off in the Cook Isles on the way home via Los Angeles. Wow!

[HeronNS in reply to Charlie1boy]

We'd booked a cruise 2014 which stopped in Australia and mostly NZ, but that was the year I broke my leg and so the trip never happened. I have a long sad tale of bad insurance and unkind cruise company, but I'll spare you!

This stress, both physical and psychological, was probably one of the triggers for my later diagnosis of PMR, so not entirely irrelevant!

[Charlie1boy in reply to HeronNS]

Could well have been! You just never know with PMR.

[Louisa1840 in reply to DorsetLady]

Hello from sunny (ATM) Tasmania D.L. IT's lovely to think of you just over the ditch from us......

[DorsetLady PMRGCAuk volunteer in reply to Louisa1840]

Thank you…

[HeronNS in reply to Louisa1840]

Is the term "ditch" used the same way we refer to the Atlantic as The Pond?

[Louisa1840 in reply to HeronNS]

Yes, Heron, exactly!

[pata63 in reply to DorsetLady]

@Kaaswinkel72 I am able to see related posts for hydrocortisone by following this link

healthunlocked.com/pmrgcauk...

Do you see the related posts if you follow the link? If not you may need to do some searching. I believe related posts won't come up for you when you use the spelling "Hydrocortison"

[Kaaswinkel72 in reply to pata63]

To all:

My post is regarding hydrocortison and how important a provisional diagnosis is.

I personally would like it if “ people” stick to that subject.

And maybe open a “ new post” with travel stories and xmas if that is on your mind. Thanks.

[nuigini in reply to Kaaswinkel72]

I'm in a very similar situation Kaassinkell but have been too busy today to reply. I will do so tomorrow.

[DorsetLady PMRGCAuk volunteer in reply to pata63]

They should do [from the content and related tags as well as title] - but facility was kaput for a few hours. I contacted HU and they confirmed now back up and running…

[Carrollee]

Hi

Twice I got down to 4mg of pred in the past and was put onto hydrocortisone 20mg, 10/5/5. I was told 5mg of hydrocortisone to 1mg of pred. I liked how I felt on it but each time the pmr came back quite quickly (pain and raised crp) so I was eventually put back on pred at 8mg and had to deal with all the withdrawal symptoms etc again.

I am now on 4mg again but had to halt any reductions or changing of drugs this time as I was diagnosed with lung cancer (never smoked) out of the blue 🤷🏼‍♀️

I think this time I will reduce the pred instead of changing anything and see at what level my pmr is being controlled at.

All the best. I think at 3 weeks and free from pmr returning you may be ok. All the best 🤗

[PMRpro Ambassador in reply to Carrollee]

Sorry to hear that - all the best.

[Carrollee in reply to PMRpro]

Thanks. So far it has a happy ending. I keep meaning to put my journey up as it is the NHS at its very best

[PMRpro Ambassador in reply to Carrollee]

When it is good it is very very good - and especially when push comes to shove as I know from personal experience with my husband. But these days - anything else is a tad dodgy!

[Kaaswinkel72 in reply to Carrollee]

thank you for very helpful for me!) reply. And all the very best with your lung cancer diagnoses, hope you managed to pick it up early stage.

[Kaaswinkel72]

I want to thank all of you who replied to my query. 100 of us (PMR ers) know a lot more than one ?ex PMR er with a computer (me).

[Camelian]

I managed to get to 6.5mg of pred but after a few weeks felt really unwell and extremely fatigued. Long story short I ended up back on 10mg which is where I remain. I have an appointment with a endocrinologist Christmas eve and I think the plan is for me to go on hydrocortisone. The rheumatologist thinks my symptoms are down to my adrenals not waking up but as the symptoms are mainly headaches, scalp tenderness, face pain - not jaw, sensitive teeth, and earache I'm worried theses are GCA symptoms but the rheumatologist doesn't think it is GCA, I had a pet CT scan at 7mg and no inflammation was identified,I know it should be a lower dose before having the scans. Bloods all normal 🤷 I'm really worried about switching to hydrocortisone incase I do have GCA and end up losing my sight. I guess I'll just have to wait and see what's said in the 24th. My GP thinks I will be better on hydrocortisone but I'm very apprehensive 🤷

I hope all works out for you🤞

[Kaaswinkel72 in reply to Camelian]

So many uncertainties that worry you, and so many of us. People that don t have any of these chronic conditions really have no idea. As if “ we” partly live in a diiferent world.

[nuigini]

Hi Kaasiwinkel. I’m feeling the same identity crisis after being told by that PMR in in remission after 10 years.

I discussed this in response to a post a few days ago by Pawscat11.

The rheumatologist, who I very much trust advised me to taper prednisone, no mention of hydrocortisone. Personally, I’m more comfortable with this approach for a number of reasons, not the least of which, I am aware that PMR could rear its head again. I don’t want to do anything that might trigger that. And there’s always my paranoid worry of GCA.

As always, I did a lot of research on what ails me, in this case corticosteroid induced adrenal insufficiency. The following link contains some very detailed and scientific information, however, it’s very informative.

endocrine.org/clinical-prac...

The revelation of no more PMR was made in late August. I live in Canada but my husband and I escape the Canadian winters in Panama where I am currently. I’ve been creeping down on prednisone and fight off varying levels of fatigue every day. I have tons of questions that will have to wait until I see the rheumatologist in May. Although I could contact him if I run into any major issues.

[Kaaswinkel72]

thank you so much for yr reply. I will certainly read it very carefully.