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PMRGCAuk
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Brilliant app. With Endo!

Just home from first app. With Endocrinologist. He listened carefully to what I had to say, asking relevant questions. He explained how everything worked re our adrenals in a very clear way.

I am to have another synacthen test in 10 day' s time, when he will also test my pituitary glands. He also mentioned that it could be better for me to take my coated Pred in morning instead of supper-time, so will try it.

Now listen up - he also said that a study he has recently done on PMR patients and steroids found that 50% have problems with adrenals many more than previously thought. He has rolled this info out to rheumatologists!

What a sweety - think I'll marry him.

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Yes, book the wedding , he sounds knowledgeable....for a change!👍

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I’m off to buy a hat 😉

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I'll be bridesmaid !😉

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I'm looking forward to the cake!

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On yes...the best bit!!👍

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Thinking about it - we'll just have the cake!

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Agreed!

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Dear All: PLEASE KEEP ON-TOPIC!!! :-D

(I'll get my coat now and leave the premises quietly....) ;-)

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Quietly, you?...never......

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Ohhh... ok then Lt. ;-)

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Oops!

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Second thoughts: enjoy some Fun in between the important stuff.. ;-)

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That’s more like it 🤪

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Phew, thanks Soraya... ;-)

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What exactly does he mean by ‘problems’?

They struggle to work again? Or they don’t work/never get back in full gear?

Pleased you had such a positive appointment. Must give you hope, that someone is listening.

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He didn't give specific details, I'm afraid, but when I have my test I'll try to find out.

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When you see him do ask him if there is a reference please. Was it recent?

I've been saying this for ages and had heard there is some evidence this may be so.

My previous local specialist for PMR/GCA said that if you reduce slowly enough everybody can regain adrenal function - so I told him how many people I know through the forums who DO have problems. He was amazed. There is a study from 2013 that found 5% of GCA patients never do regain adrenal function - and that is higher than most rheumies would admit.

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Yes he did imply that it was recent. At my app with new rheumy nurse he told me that they now had new info with guidelines when to send patients to endos. So I think this is in fact from Dr Abbass. Will ask at my test.

Hope you and OH are doing better.🌻

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Getting there thanks!

Where are you? Which hospital is he at?

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Dr Abbas is at St James in Leeds, Yorks. When I got the appointment for a Saturday I rang to make sure and was told that because of long waiting lists he was doing extra shift! - millions of brownie points!

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endocrine-abstracts.org/ea/...

I suspect - I assume he must be involved with Sarah Mackie's team?

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I wonder - will ask.

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Thanks for this. Will follow up.

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Interesting...

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Might the 2013 metrics apply to PMR Patients too? And, as you imply, how many Rheumies would spill-the-beans around the potential consequence of permanent adrenal insufficiency / damage from long-term steroid use? Only asking..

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We are bombarded with the threat of the damage that can be done to our bones and are almost force fed ghastly drugs. Nobody ever mentioned Adrenal ruination - why? Not Rheumatology area of concern?

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Quite, Jane. A distraction / damage amelioration / limitation strategy on the part of some (I stress some..) Medics maybe? But what do I know...?

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You know lots. I love that my favourite people say goodbye and then come back again.....just saying.🥚good egg.😊

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Thanks J. Like a bad penny maybe..? :-D

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Most of us never get referred to an endo—so maybe he’s seeing patients who otherwise aren’t responding and thus get referred to him?

Where I am in the states, you can’t see an endo unless all else has failed and no one knows what to do with you. (I’m talking about complicated cases, not obvious types of endo referrals). Even then you might have to beg. Used to be 5 months for appt, probably more now,

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endocrine-abstracts.org/ea/...

"Conclusion: Our study suggests there is a high prevalence of adrenal insufficiency in both symptomatic and asymptomatic groups in this patient population. The vast majority of patients with abnormal SST results did not have suitable follow-up tests and a large proportion were not referred to endocrinology. These results suggest the need for a joint pathway of care for evaluation of adrenal insufficiency in this patient group. Further studies, evaluating the optimal intervention strategies to aid adrenal recovery are also needed."

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Wow - you found it. I'm sure this will be the study. When I see him next I'm going to ask if he would give our Leeds/Ilkley group a talk - would imagine he'll be too busy but if you don't ask .......

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Would be great if he could do that but I think we would need a bigger room!

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Perhaps you could ask him for a copy of the study , a link , or its name and author , so we can all get a copy and go armed with the facts when we next see the Rheumatologist.

Maybe , the wait for some who are struggling with adrenal issues won't be as painfully long in future.

Great news with your appointment , perhaps I should move to Leeds!😋😁 xxx

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Yes I think I am lucky with this one. I think the reason he told me about his study was that that had happened to me. As when Dr Pease my rheumy got my poor baseline and poor response results at 4.5 pred he told me to continue reducing to 1mg and he would see me then and if I still felt so exhausted may send me for another Ss test. But I didn't get that low, was so ill and got another rheumy re this app.

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The link for the abstract is in my reply:

endocrine-abstracts.org/ea/...

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Thanks for that Brains , hope it isn't an exciting read , don't want to overwork my portable ECG machine on the first day , 😋😁😂😂😂, hugs , Bee xx

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Interesting, thank you. Hoping I am excluded (don’t we all?). had to look up differences between prednisone and prednisolone, and meaning of shorter acting glucocorticoid. I’m at 5 mg pred, staying there for several months before trying to reduce again. Worry worry worry.

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The Plot thickens..?

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I had terrible problems coming off steroids and my adrenal glands not starting up again. I saw an endo briefly and was put on hydrocortisone for a few months to get off Pred, and then when my cortisol levels started to rise (meaured by one 9am cortisol blood test) I was discharged. But I do wonder whether ongoing problems mean the adrenals are still not fully recovered.

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How long have you been off pred?

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2 years nearly, though I sometimes take a short dose to go on holiday etc (docs say that is ok). I still suffer fatigue though, which may be due to the histamine thing ... who knows ....

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I am shopping for a hat!

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Sorry Jane the weddings off! I'm much too busy - so we're just having the cake - yum!!

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Not gluten-free I hope!

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Absolutely the best spongecake recipe I have is naturally gluten-free! And the gluten-free xmas cake I was brought was better than any fruit cake I have ever eaten!

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Lemon drizzle for me......

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PMRPro’s baking! I’ll have a slice of her Victoria Sponge. Real cream pleeeese!

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I'm not surprised by any of this. Recently, I was telling someone about my autoimmune issues and prednisone use. Except for the full blown adrenal crisis she had, we had much in common. When I told her about some of the symptoms I have when tapering prednisone, she thought the symptoms were pre-crisis symptoms and it was good that I increased prednisone. She sounded like an expert about the HPA axis and strongly advised me to see an endocrinologist. She considered many factors about my age, prednisone dose, length of treatment and said adrenal suppression was "likely". I balked at that conclusion and gave her more details. She revised "likely" and said "likely permanent".

I was distressed about this and told my GP and rheum and they agreed with "likely" but disagreed with "permanent". They didn't think an endocrinologist would have anything of value to add to this and recommended a longer taper. I eventually calmed down but did get an endocrine referral in April.

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I agree with her - I wouldn't believe the average rheumy about adrenal function returning.

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That's a bit worrying in so far as many of us PMR / GCA Lot place our faith in a Rheumatologist to join-up the dots both in terms of assessing disease course / treatment and diagnosing any possible co-lateral damage from long-term steroid treatment (if my understanding is correct?).

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I gave up going to a Rheumatologist a year ago, I realised he was making it up as he went along!.......the differing opinions of Rheumies posted on here are so shocking sometimes. Adrenal problems seem to be another battle when we have struggled to lower.....let's just hope we can deal with it ourselves, although we shouldn't have to. In the 7 years I've had PM R nothing has changed, as regards to genuine advice, that's the sad part. Thank goodness for this forum!

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Absolutely right. When you get through the long time in the waiting room all you got from the one I was with are platitudes and no real advice. This forum is far more valuable. I'm sure there are some good ones around but I've only encountered one and that was when I was first diagnosed 20 years ago.

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Gosh twenty years, does that mean you have got over PMR, and then it's returned?......so nothing much has changed real!y as regards Rheumies....no surprise there then.😕

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No, I haven't got out of the club yet. GCA came along a few years ago so I have to keep slogging on. This forum has been such a help and I'm now on 8/7.5 thanks to DSNS taper but have problems with arrhythmia, attributable at least in part, to the steroids I think.

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Have you had a chest infection that would not clear. A very common cause of arrthymias, and easily treated with a low dose of beta-blocker. Have you had a Holter 24 hour monitoring?

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What is easily treated with a low dose of beta-blocker?

I thought this was rather interesting:

sciencedaily.com/releases/2...

especially this comment

" "However, it does not always have to be connected to a virus infection," he says. "The body's own antibodies directed against CAR could cause the disease as well."

That is what the cardiologist believes caused my arrythmia. And it definitely gets worse with a flare in disease activity.

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Yes, I've had this for some years now but it has worsened. I had a 24hr monitor two weeks ago which showed up quite a lot of SVT activity. GP's response was to raise the dose of bisoprolol but I cut out caffeine and am feeling much better now. Have just posted about replacing coffee with chicory and wonder if this has helped as I see that chicory is thought to have benefits for inflammations and heart conditions.

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I cut out caffeine/coffee as discovered it was the cause of my migraines. Can still tolerate tea, ordinary or mint. Anxiety definitely makes things worse, but there we are getting older, and why do things take so much longer to do now, even familiar domestic tasks

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But the......“Despite having an abnormal SST result, 43% patients were not referred to an endocrinologist.”...... says it all really. Quite apart from the other errors highlighted in the link from PMRpro.

Also of interest: “ The mean duration of prednisolone use was 4 years, 3 months (range 11–204 months).” not quite the oft quoted 5.9 years, but over double the 2 years from the doctor’s bible that they quote to us all the time. (204months is 17 years!)

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Yes the duration is eye opening as well!

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How can Drs routinely prescribe steroids yet know so little except bone issues? They must really scare them in school.

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My theory is they sleep through their pharmacology lectures - and aren't actually bright enough to think laterally...

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Haha

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It sounds like you live in the states? I am in Virginia. I have had a super awesome and endocrinologist for 10 years following two thyroidectomies. She is worth her weight in gold and then more no pun on this Saint Patrick's day, lol. I have been on Prednisone for approaching 18 months with a rheumatologist, my second again who thinks the goal is to get off as soon as possible,. Yes even after sharing the research and articles with her. Recently I was discussing as I have gotten down to 7 mg and am cautiously trying to pick out PMR, fibro Awakening, new fatigue in the last three weeks which is when I tapered 1 mg. Anyway, and talkin to my wonderful Endo about the suppressed adrenal situation she said her best advice would be to shock the adrenals into Awakening by alternating the prednisone dose every other day. Until you try it you don't know whether it works for you some people can manage others not. Seems anything would be worth a try in my opinion. Best luck to you and everyone. Janet

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Hope it works for you, keep us posted.....

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Haven't started it yet but most certainly will do. I will talk to her about it more when I see her next.

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That is a very good idea. I will try that but it goes against the "split the dose" approach to PMR. I guess it all depends if the symptoms are due to PMR or adrenal insufficiency. I now believe most of my symptoms are from adrenal insufficiency but I don't know for sure. Of course, if the adrenal insufficiency is permanent than an every other day dose could be dangerous.

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Thanks for your reply DadCue,

I'm not sure about your comment with dose approach preferred? Not the case here and the US unless of course someone has problems with their dose. This recommendation comes from an endocrinologist I hold in high regards.

There's good information and videos online. I listened to Doctor Berg this morning. His 31 minute video was very helpful. I also came across a list of side effects adrenal insufficiency something we all well struggle with at some point in our prednisone after long term use. Working with your doctor perhaps have the Strayton test. The every other day of the prednisone is meant to shock the adrenals into Awakening. As a comparison, I'm a person with no thyroid and know that my body can go 4 days with no supplementation before I have any ill effects. The adrenal situation is not nearly as quickly a fact that I am sure we're only trying to help it along. Best of luck to you.

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I truly like the idea of a prednisone dose every other day. My rheum has suggested that but I more or less ignored her at the time because PMR symptoms would not allow me to do that. An AM dose followed by a smaller PM dose worked better. I can still hear my rheum scolding me for splitting the dose.

Now I no longer worry so much about when I take prednisone. That alone suggests PMR may have timed out but I still can't reduce below 7 mg for any length of time. I don't know why. I suspect the adrenals may need a shock to wake up. On the other hand, maybe they won't ever wake up no matter what I do.

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so why so why not give it a try? I am sitting here this evening after having just gone out for the first time in two weeks I have had a second case of the flu Miss 6 days from work and am just exhausted from four and a half hours of necessary errands today in preparation of work tomorrow and leaving to see my son on Friday. As I sit here I have realized that the overall achiness and pain in my 10 fingers my hands and my wrist those were a big part of my initial PMR onset my shins my neck my shoulder blades pain I just have not experienced at all but today is one month since I took the last taper from 8 to 7 mg. So whether it's PMR or fibro or a sickness it's something I have not yet other than one time in the beginning had to increase my dose my Max was 17.5 from 15 so I'm thinking I probably should do that tomorrow for a few days and see the result. Like everything else this is trial and error for all of us. Keep us apprised of your progress.

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The most likely reason for being unable to reduce below 7mg is that the underlying cause of the PMR is still active.

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It would be interesting to know if the adrenal “damage” is related to initial dose of pred at outset, time on pred, or total dose of pred during the course of treatment. We may have to rethink the “Tortose vs Hare” analogy.

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I doubt it somehow - if it were initial dose or total dose then you would expect it to be more prevatent in GCA patients who are likely to come out very much at the top of the pile on those numbers. That isn't the impression I get - anecdotally of course. If you have GCA, at the outset you will get a similar amount of pred in a week to what a PMR patient clocks up in a month.

The tortoise v hare strategies also don't make that much difference to total dose. All they are doing is spreading a reduction step over a month - you will be one month behind on dose. Using traditional reduction steps you would go from (say) 10 to 9 in one step on the 1st of the month, using one of the slow approaches you will reach everyday 9mg by the 28th or so. In the meantime you are less likely to have panicked at steroid withdrawal aches and pains and, wondering if it is a flare, INCREASED you dose. Many people using a slow approach say they have never had a flare or if they had problems went back to the previous dose, 1mg above the flare dose. People who flare often go back 5mg to manage that flare, some doctors start them from the beginning again (I have no idea why) - the perceived benefit of rushing the reduction to keep the total dose down actually results in losing months on the downward journey.

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Thank you for the reply. As usual, you are right. This recent news about permanent adrenal damage to 50% of long term pred users has really got my attention.

I know that you have seen the abstract for the publication. Is there any way that you know of that a layman can get a copy of the final research paper?

You are a valuable asset to this forum. Don’t ever go away.

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There may not BE a final paper - that was an abstract submitted for a Proceedings held last May. While I can't speak for this one in particular, these sort of meetings are usually a collection of 10 minute presentations or poster presentations for which a final paper may or may not be submitted. Often they are preliminary findings being put out there for comment - and to establish intellectual property rights.

I doubt there is a lot more info in a brief paper than you can see in the abstract to be honest - but you could TRY asking your local library - my link above gives you the reference details.

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This is just my opinion on the subject. I wish I knew the answer.

It seems to me that length of treatment is most important. The adrenals are suppressed when taking low doses of prednisone. The longer the time on prednisone the adrenals atrophy and will eventually lose their ability to produce cortisol.

I used to take large doses but quickly tapered back to zero in 3 months and had no problems. The cumulative dose in 3 months was quite large. It wasn't until I took 10 mg or less for more than than a year that it became seemingly impossible to taper off.

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DadCue / Rich: apologies for gate-crashing this conversation but what you say (DadCue) makes sense in that the cumulative Pred dose over a long period of time could be a significant risk factor in (in some cases, possibly irreversible) adrenal gland atrophy as much as anything else.

Maybe the above is why some GPs / Rheumies seem to be emphatic about PMR (but not necessarily GCA) Patients 'getting off' of the Preds asap: but at the same time as knowing that a too fast and / or too great a reduction) might expose the Patient not only to some discomfort in terms of withdrawal symptoms but also

a relatively higher risk of a potentially dangerous adrenal crisis?

But to be fair to the Medics, they are probably managing contingencies and risks in any particular Patient's personal context at any given time. That's my best guess.

Either way: it does appear that the mentioned recent study / Paper (Sagar / Abbas) suggests that the long-term corticosteroid usage / adrenal damage issue for PMR patients might be more significant than previously thought (or maybe acknowledged?). And, from what I have read, it also challenges / contradicts the suggestion in another recent research Paper (sorry I've forgotten which one) that (sic) 'long term Corticosteroid use in PMR patients has relatively minimal heath consequences'.

All I can say is: 'The Plot Thickens..' ;-)

MB

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I think that those 2 papers are working on different aspects.

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And with differing agendas? (no judgement implied).

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Oh of COURSE not - conspiracy theory now..

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Cambridge English Dictionary definition (2): 'Agenda': a list of aims or possible future achievements'. In other words: differing motives for pursuing a course of action (or in this context, research).

No conspiracy theory on my part.

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Research requires independent collaboration and duplication of results. At least there is a degree of shame when people doing research have an agenda and get it wrong.

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Yes, the plot thickens. However, after learning about this new study, I find myself starting to think a little less like a tortoise and a little more like the other guy.

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This is just a self evaluation of symptoms. I think my PMR symptoms did stop 4 to 5 years ago. This is consistent with the length of time PMR should last, give or take. I still needed to updose prednisone for "flares" . These flares occurred during the same circumstances that everyone complaints about ... infections, stress (good and bad), overdoing it --- precisely the times when the adrenals are supposed to step up.

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I think the short synacthen test shows if able to wake up or not, maybe you could ask for one. Take care.

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Good for you. I don't think they can tell until you have the Synacthen test. Hope you get it sorted in April. For DadCue

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I think the prevalence of Autoimmune disease needs a whole new specialism. We are just treating the symptoms without the root cause being discovered. Every aspect of modern life seems to be putting our bodies on high alert. I think it is an epidemic that needs to be addressed in a completely holistic way.

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I'm not sure that the synacthen test has any value either. She said the test itself and interpretation is very nuanced and way out of the realm of a GP, rheumatologists, and most endocrinologists who usually treat diabetes. She gave me names of some endocrinologists with HPA axis specialty but there weren't that many in the entire US. I decided that a generic endocrinologist would have to do.

The more I thought about it ... if the adrenal suppression is permanent nothing changes except I will take prednisone the rest of my life. Then I won't be harassed endlessly with tapering off.

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I know of someone who's 20 year old son has Addison's disease, and will be in pred for his lifetime. You're right, no tapering, but he does need to learn to dose if he experiences trauma or distress (such as surgery or mental health issues). She said the biggest clue was that he was orange (skin tone). Apparently this is a tell-tale sign of adrenal glands not producing enough steroid hormones. Makes me wonder if this is something that people on lower doses with adrenal function problems experience? I understand though, that Addison's is when the body attacks its own organs, our autoimmune disease involves our body attacking our major joints, so the severity of "adrenal insufficiency" is likely more substantial for folks with Addisons.

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Yes, being diagnosed with Addison's disease at age 20 is very different than prednisone induced adrenal insufficiency at age 65. However, both have serious ramifications.

I have altered my thinking with regards to PMR flares. It seems like there is no way to distinguish a PMR flare from symptoms of adrenal insufficiency. My response to each will be to increase prednisone so nothing changes.

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Yes, I read that the other day, especially where clothes rub or in folds. Not to be confused with the normal discolouration under folds. I was only wondering the other day why I have unusual yellow skin in various places in a line where clothes go and where skin naturally creases. Hmm.

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My feeling exactly!

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Wow! What a nice doctor and that's so interesting to learn!

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This work on adrenal function was done in Leeds - where an active PMR researcher is also based and I imagine she provided the patient data. We're talking about getting some form of interactive up-to-date info source running - though it won't be in the next few months!! - which I think could provide a founded educational basis for both patients and medics. GP training shouldn't be too challenging (you'd hope) because patients from here and the charity in general would be in a position to lead that by pointing them to reliable, expert-backed opinion. The problem will arise with other rheumies who will struggle to accept such different thinking on the part of the ones who see it a bit more from the patient side.

Unlike some, I DON'T expect a rheumy to know about endocrinology - because a lot of endocrinologists would struggle with assessing patients still on pred, often demand they get to lower doses of pred than is possibly safe without considering potential probelms and informing their patients. But I do know of someone in Scotland who HAS looked at it and assesses results in a different way - don't know much about him, just that he thinks about it!

Another field I think needs to be involved more directly is cardiology - because I think arrythmias are also far more prevalent amongst us than most doctors think or know. A better understanding of steroid-induced weight gain and diabetes is also called for - and that probably needs doctors who are convinced of the value of low carb diets in both.

In the end I think what needs to develop is a multidisciplinary centre of the sort that is available at Addenbrookes for a/i patients where the specialists do have rather better joined-up thinking. Unfortunately that is going to take time - and above all money. That the NHS really doesn't have - and I won't get into the other potential difficulties there in the future.

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I`m beginning to think the "Specialists" will end up coming to us for info, we seem to know more than them!.....

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Dreaming of holistic health care…………………

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Does the multidisciplinary center at Addenbrookes for "a/i" patients mean "autoimmune" or "adrenal insufficiency" patients? I always get confused with the "a/i" and "AI" abbreviations and can't always tell from the context.

Is there any center in the US that is similar?

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Sorry - autoimmune. But from what my friends who are there say, I think they happily take on any patients with complex needs once they get into the system with one specialist who realises what else is required - rather than them fudging it.

Sorry again - no idea what there is in the USA. I would hope a Mayo institute might work on a similar basis but who knows.

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I am treated by the Mayo Clinic in Florida and I’m generally satisfied, but on this issue I encountered the same disconnect between rheumatology and endocrinology. I have to push to get what I want. I am currently pondering how I might get Mayo to consider changing their approach. I do find it to be a place willing to work with patients more than any other I have encountered in the USA.

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Which is a start - it all comes down to personalities I suppose. And egos ...

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Yes, I don't think a multidisciplinary approach is such a great idea. Hospitals in the USA tout the concept all the time. In reality, it just doesn't happen. Specialists always seem to have a narrow focus and rarely agree on anything. Even when a "team" convenes, one person tends to dominate and the others are rendered silent or just agree for the sake of an agreement.

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Like most committees...

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Hmm, perhaps I don’t know what I’ve got, but joined up is not what I’d call their approach. Perhaps it is the system that encourages it. As usual it is very down to the individual and some departments do seem to think theirs is the only one in the world.

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Strange isn't it - when I first worked in the NHS the thinking was far more joined up! That what they call progress. NOT!!

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I do think it’s the financial structure not helping.

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I see 3 consultants , gastro, respiratory and rheumatology, all autoimmune conditions. Trouble is, no one looks at the whole picture of me!! ☹️ Each wanting to give their opinion but no dots are joined!!

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This is all very interesting, Marlene.

The study that PMRpro has found was a retrospective study of only 95 patients' data. They do state that: "The mean time to adrenal recovery overall, from baseline test was 18 months." which says there is a chance of recovery for some!

They admit that: "Further studies, evaluating the optimal intervention strategies to aid adrenal recovery are also needed."

We must consider this for a topic at one of our support group meetings.

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Sorry if this has been said before. Can he give you access to the study. I thought it was across the board that adrenals were affected.

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Pmrpro found the study please see her post.

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Wow, I have Endo appointment in May, looking forward to it now.

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Hi. Are you in England? I saw an endocrinologist and he wanted to do the Synacthen test but none of the drug appears to be available anywhere in the country! If you know where I can get any for my test it would be great!

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There's a dose in my fridge!!! But I;m not in the UK ...

There are some strange shortages - but that beats all!

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Sorry, I thought you must be joking! I'm in England and having SStest next week.

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Where abouts in England are you? I am in Shropshire but have been told there is a national shortage and none available in the country for at least 2- 3 months!

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I'm in Leeds, Yorks. I will ask next week about shortage.

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Do any of these studies clearly preclude the fact that the patient may have had poor adrenal function before going on prednisone to addresss PMR/GCA/LVV? Sorry if I missed that and it was there.

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Don't think so - there has been suggestion in the past that poor adrenal function may be a cause of PMR but that has been doubted and even dismissed. Adrenal function DOES fall away as we age anyway so the older you are the more likely it might be that your adrenal function is compromised. But it isn't a standard test in the process of diagnosing PMR despite PMR being a diagnosis of exclusion.

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