"Intetesting conversation with Endocrinologist!"

[Longtimer]

Got a phone call just now from endocrinology, my cortisol test at GP' surgery was 1 56, she said that's good, it shows things are working....I am on 4.5mg......I said this must be taken into account I suppose?....she said we will get you an ACTH test done, if it's 250, that's regarded as normal. ...she asked how I was feeling, flooded in pain, deathly fatigue, basically housebound, she suggested another appointment with Rheumatology, but quite honestly I don't think I will, when you are told you have Fibromyalgia, it's like, sorry, nothing we can do for you......just wish there were tests to rule things in or out!.....When I have upped steroids by a couple of mg just to get out for my birthday, things are a bit easier!.....but of course Fibro dosent react to steroids!....how confused am I!

At least I can sit in the garden today, nice temperature....

[SnazzyD]

Perhaps you need more Pred if an increase helps the pain. It is difficult having both Fibro and PMR and navigating return of adrenal function.

It’s interesting that they are now thinking Fibro is immune system based with new research showing antibodies being present that if injected into mice cause them to have heightened pain responses.

[Longtimer in reply to SnazzyD]

Thank you for that very interesting about immune system based. All I get told by GP and Endo this morning is to lower!, but they don’t feel like I do right now. Also over 2 years ago had PET scan which showed no inflammation, so conclusion is Fibro! I would up pred like a shot, but will they keep prescribing it. Hope there will soon be conclusion to what you have mentioned. Will try to look it up. Thank you

[SnazzyD in reply to Longtimer]

It is fairly new thinking and isn’t mainstream so I fear many will still be consigned to the all in your head camp. I know Kings College London got a grant to study it further. I have linked an old article and a bit about them getting a grant in 2023 or a 5 year study. It may be that Pred isn’t as effective if at all for Fibro but some other active substance is needed as well as or instead of.

theguardian.com/society/202...

kcl.ac.uk/news/dr-david-and...

[Longtimer in reply to SnazzyD]

Thank you, very interesting, I’m sure they will discover and move forward. Trouble is when I start to read about Neuroscience I can’t stop, very fascinating. Please let me know if anything else comes along about it, or of course….. results!

[PMRpro Ambassador in reply to Longtimer]

You know my views - if pred makes llife possible, then that is fine by me.

[Longtimer in reply to PMRpro]

Exactly this is what I said this morning, she asked how old I was, 72 now! She said you are too young to be housebound, to which I replied yes, my quality of life is more important if it gets me out of the house! and can only do that with upping my steroids! Watch this space! Hope you are winning the battle.

[PMRpro Ambassador in reply to Longtimer]

Doing pretty well with tocilizumab and 7mg pred - as long as I can get that, I'm happy! Drove from Italy at the beginning of July, had a week in Whitby, drove up to Scotland to t'other daughter, helped her a bit moving in to her new house having to do stairs (yuk), seeing an architect tomorrow. Just nipped down to Whitby on Monday for a funeral, back yesterday. Catching up today - waiting for the sun to come out, it rained last night! Been so cold - it's 31/32C at home which is too hot but this has been ridiculous for July!!!

[Longtimer in reply to PMRpro]

Blimey, I’m out of breath reading that! Stop showing off! Would try anything suggested to get me out!… can’t go on like this not after all these years! Have turned down going out with friends and family, not good. Keep doing what you are doing!

In summerhouse looking at lovely garden, out of the sun, about to drink more tea!

I

[PMRpro Ambassador in reply to Longtimer]

I was sitting down all the time I was driving ... What I struggle with is standing and walking more than about 6000 steps a day and even that I seem to only manage at home - was struggling to do more than about 2000 last week here - must be the wind!

I really think you need to get through to the endo how awful and limited you feel. And how that bit more pred makes life livable a bit. And I'd drag in mental health references because that seems to ring their bells these days.

[Longtimer in reply to PMRpro]

I said I had upped pred to get out of my house, she wasn’t interested, she wants it lowered!Referred me to Max…. No good contacting Max he said last time I saw him, stay at 5 if you have to. I’m pretty sure if I say I’m depressed, which I’m not far off some days, I will be prescribed an antidepressant. Some days I feel like a drug addict not functioning without pred! I would try a DMARD if offered or anything similar. Keep enjoying your escapades.

[Longtimer in reply to PMRpro]

Oh took me out for a coffee today to a regular place we go, a couple of people asked if I was ok because of losing my balance etc. This my be a silly suggestion because of such a low dose but is it worth me splitting my dose 2.5 in morning 2 mg about 2 pm.

My son thinks I should try acupuncture but not really mentioned much on here so have never bothered. Still hot here!

[PMRpro Ambassador in reply to Longtimer]

No way of knowing - try it and see. I still think you need more - and I would be demanding it if it were me.

[Longtimer in reply to PMRpro]

Absolutely agree, but with them now saying it's Fibromyalgia I'm stuck, because no steroids for that!....I will for a few weeks see how splitting the dose goes. Next month family taking me out for afternoon tea for my birthday.....I will be upping the dose before hand!!........

[PMRpro Ambassador in reply to Longtimer]

They are supposed to be managing symptoms - if they are better on more pred, where's their problem?

[Longtimer in reply to PMRpro]

Yes....Max said you may have to stay at 5 ......will do that because GP has had it in writing ( she thinks steroids are poison)...will up when doing something out of routine.....I wish. My biggest problem is my head dosen't match my body.......I have always been very independant....not last few years!...Have a good weekend,they keep threatening rain storms everywhere......we haven't had them yet.....

[PMRpro Ambassador in reply to Longtimer]

It will rain this afternoon - but that's OK, the morning was lovely! Must be aclimatising - not cold today! Though not warm either and socks are at the back of my mind!!!!

[Longtimer in reply to PMRpro]

Been hot here for quite a while, only a few weeks ago we were saying we were cold enough to get a blanket!....the old saying, blink and the english weather changes is so right.....OH would love us to get rain....our garden is very different this year.....after weeks of rain......masses of slugs...37 on the lawn one morning.....never known it before.....

[Whippetygirl in reply to PMRpro]

6000 steps is one heck of an achievement, 2000 steps is not to be sniffed at, I am pleased if I can manage 3/4000 depending if I have my phone in my pocket.

[PMRpro Ambassador in reply to Whippetygirl]

Same here - I like to see 3,500 or thereabouts and it's actually easy enough on the days I remember to put my phone in my jeans pocket so it get all my movement!!!

[daisylazy in reply to PMRpro]

Well done you ..Enjoy your break in England and Scotland .You would put me to shame .

[Longtimer in reply to daisylazy]

Not sure if PMRpro will get this it’s come to me

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

She will, like me she reads all replies… 🤣

[Longtimer in reply to DorsetLady]

Sorry silly me!

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

Some of us are just gluttons for punishment… 🤦🏻‍♀️

[Longtimer in reply to DorsetLady]

I don’t know how you do it!

[PMRpro Ambassador in reply to Longtimer]

DL and I see EVERYTHING ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Well we have got 3 good eyes between us…. 👀👁️… 😉

[Whippetygirl in reply to DorsetLady]

And brains that work.x

[DorsetLady PMRGCAuk volunteer in reply to Whippetygirl]

Doesn’t feel like it some days [well in my case that is!]..

[PMRpro Ambassador in reply to Whippetygirl]

Brain? What brain????

[Longtimer in reply to PMRpro]

Sorry don’t even know my name today!! Hot weather isn’t helping either!

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

Sorry- and you are? 🤣

[Longtimer in reply to DorsetLady]

No idea just some old girl sitting in her summerhouse. Is Dorset hot?

[PMRpro Ambassador in reply to Longtimer]

Scotland ain't ...

[Longtimer in reply to PMRpro]

I always think Scotland has the most wonderful scenery, but don’t know if I could cope with the weather, suppose it also depends where you live.

[PMRpro Ambassador in reply to Longtimer]

Can be good enough but a few degrees less than the southern half of England. Which isn't always a bad thing!!!

[Longtimer in reply to PMRpro]

Yes, I admire those that live on the islands....no trees, windy.....very tough people...

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

Not as hot today as it has been all week… more of a breeze… did have a couple of loud thunderclaps last evening, but no wet stuff!

Maybe a few showers early tomorrow - but usually we never get tomorrow what they say today.. if you know what I mean..

[Longtimer in reply to DorsetLady]

I certainly do….can’t rely on forecasts.

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

I’m close enough to harvest a bit of seaweed [although probably not allowed to nowadays] to go back to the old ways of hanging some outside the front door.

Have to rely on the tried and tested - “red sky at night… etc.. or as my in-laws [farming stock] used to say “it’s dark over Will’s mothers, so it’s going to rain tomorrow” -

T’internet says Bill’s and north country or midlands, but down south it was upgraded to Will.. 😊

[Longtimer in reply to DorsetLady]

Yes familiar with all that. No red sky here right now. Another forecast is if cows are laying down in the field! It’s a very warm calm evening here no leaves moving on trees at all. Lovely.

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

Ahh yes, good country girl that I am, mustn’t forget the cows..

[Longtimer in reply to DorsetLady]

Love the old sayings and adages.

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

There’s a lot of truth in them as well.. experience gleaned over many generations of people communicating with nature. Look at any country in the world… and you’ll get that knowledge - of course much of it’s been derided over the years, but maybe it’s now becoming apparent that they did actually know what they were talking about..

[Longtimer in reply to DorsetLady]

You’re right but they will never admit it.

[tangocharlie]

I personally don't think those numbers are good. Mine were around the same and the endo said the ACT should be above 400, which mine wasn't so I queried that, but he signed me off anyway. I think they assume that if your adrenals do respond at all they will just continue to improve. Endos are more used to dealing with people with things like Type 1 diabetes and Addisons etc so don't have room on their NHS lists for long-term monitoring of steroid-induced problems. I ended up back on Pred and accept for QOL of life I will be on it for life, it's just a case of trying to get the dose right when things are constantly shifting, PMR is not a linear progress thing.

[Longtimer in reply to tangocharlie]

You are right, I am sure I will be on pred for life too, and about Endocrine problems. Getting to 4.5mg has been sheer hell, not sure what you are on so good luck with any lowering. Keep us posted.

[Longtimer in reply to Longtimer]

Forgot to say, Endo said 156 shows things are happening, if you get to 250 after first 30 mins of ACHT test, all will be normal!….couldn’t be bothered after that!

[Gaycreasey]

I’m sure I will probably be on pred for life. My current dose is 2.5mgs a day. That’s ok if I’m just going about my business calmly. Anything unusual- forget it. I’m at the moment returning on the train (the second of three) from a week in North Wales. Lovely holiday, lots of trips out by coach, train, canal barge but on the first day I upped my dose to 5mgs because the journey there had caused back pain. Three hours on a newly designed train that didn’t take into account the need for some level of comfort! I will go back to 2.5mgs once home and back in the old routine. I see that as my ‘norm’ from now on.

[Longtimer in reply to Gaycreasey]

Welsh holiday sounds lovely, my son and DIL go every year with their two dogs...they love it. Well done to all the travelling!!.....Dosen"t bother me at all staying on pred. Would be happy to be able to cope on 2.5mg ....keep going, well done ....

[marionofnorwich]

That's interesting Longtimer as my rheumatologist (same hospital) said the he wanted to see 450 for an ACTH test to show adrenal action. I think mine was 340 after 1 hour so he concluded adrenal insufficiency. I was on 4mg

[Longtimer in reply to marionofnorwich]

It surprised me too with her remark....you are right about 450. Last years test got to about 375 I think.....it was once as low as 92!..... Did you mean Endocrinologist wanted to see 450? ....I don't think 340 is that bad, but of course we are taking pred(not on the day of course)....I am on 4.5/5mg........struggling still though because of Fibromyalgia also.......hard to get out of chair today!....think I have adrenal/fibro etc to contend with.....makes me feel very low....hate it!

How are feeling anyway......do you still see Max Yates?

[marionofnorwich]

Hi @longtimer I haven't seen an endocrinologist, I am saving that up ;-). I am in touch with Max but haven't seen him for a while. But I can phone or email if I need to. It was him that wanted me to be above 450mg but as I don't feel unduly worn out, I told him that thought I could get below 4mg. But he said he thought I would be on 4mg for good because of lack of adrenal function so he didn't think there was much he could do as that much pred probably covers the PMR as well as the Ai. Generally speaking am OK but up and down as I broke my hip in June so a replacement followed which has actually healed well so getting back on my feet again and normalising activity

[PMRpro Ambassador in reply to marionofnorwich]

But at 4mg you are almost certain to show some level of suppression - you will have to get lower for it to recover further, SnazzyD had a poor result at 3 but by 1,5 it was improving.

[marionofnorwich in reply to PMRpro]

Yes, I was surprised when he gave up on them so easily! But at least it means I can reduce totally at my own pace

[PMRpro Ambassador in reply to marionofnorwich]

Very true!!!

[SnazzyD in reply to PMRpro]

Yes, it was 4mg but they still said to reduce by 1 mg per month!

[Longtimer in reply to marionofnorwich]

Well done getting over hip replacement......my biggest problem is deathly fatigue.....legs feel like they weigh 20 stone each!.......Your adrenals may pick up.....will let you know when I have my test. Also have to have 3rd infusion soon for Osteoporosis......We do what we can.....I tell people my head dosen't match my body........want to do so many things!!....

[marionofnorwich]

Yes, I just had a DEXA to see if my hip broke because there is osteoporosis present or just because I manage to slam it down on the deck while still having my feet suspended on the skirting board! Sorry should have said, yes, waiting for the result. Though they couldnt scan my left (replaced) hip because it wasn't comparative

[PMRpro Ambassador in reply to marionofnorwich]

And the conclusion is???????

[Longtimer in reply to marionofnorwich]

Thought for a minute you were goingt to say skateboard!! Suppose you are waiting for result?.....

[marionofnorwich in reply to Longtimer]

yes I should have said