This morning I received a bulky letter from the Consultant Physician for Endocrinology. As the results are above me, perhaps PMRpro. and others, would elaborate.'confirmation that your body is not producing enough cortisol with a baseline of 85 and peak of 140.4(IDEALLY SHOULD BE MORE THAN 150)'.
He goes on to say I need to be on Hydrocortisone tablets...10mg am, 5 mg at lunch, 5mg evening.'wITH the new tablets, you can gradually come off the Prednisolone tablets, by reducing the dose by 1mg every week until you stop it completely'.
2 pages of how to take the new tablets, follows, plus many warnings about dialling 999 and going to hospital for emergency injections.
He is arranging an appt. in the Endocrine Clinic.
NOW..............I have been feeling really well on 2mg Pred, and was waiting for this letter so that I could continue tapering with the DSNS method. My GP also has the same letter. I want to state, emphatically...I HAVE NO INTENTION OF FOLLOWING THIS CONSULTANT'S ADVICE! i WAS EXPECTING, AT THE VERY LEAST, TO 'UP' the Pred, but am NOT starting this regime.
The letter is too long to quote more. The references given are from 2005, 2013 and 2014. Also Addison's Clinical Advisory Panel is quoted as references.
What is the matter with me? Can I die ? I am 'all over the place' after this letter.
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karools16
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Any of us would be the same karools16. You need to find a still place within yourself to digest this information and to research its implications. I am sure PMRpro will be along to impart her knowledge. In the meantime stay calm, things may not be as bad as you fear. It is odd that you feel well. Can you seek a second opinion?
My Rheumatologist Registrar made this eventuality seem no real big deal when I expressed concerns about it. Mind you I took that with a pinch of salt, but it seems to be sortable. I am on Thyroxine for life and wouldn't know it. I wonder if it could be like that?
Those warnings are always really extreme, they are trying to cover themselves for every eventuality.
Hello SheffieldJane.Yes, I will see my GP for his reaction to the letter. I am so well at present, not just from low dose Pred. It's a marvellous feeling. I have a very bad back , relieved only by Morphine, but my Curvature of spine is worsening.
Some of the warnings are...getting to a hospital a.s.a.p.
I suppose I was lucky in that we already suspected strongly that I had adrenal insufficiency before the test, which just confirmed it. I have managed on Pred alone for the last several years (at 5-6mg pd).
As long as you are aware of the situation and have the means to act immediately, then it really doesn't seem to be very much of a worry.
No wonder you're in a bad place after receiving letter.
As S/Jane says you need to take a deep breath, stop panicking and find out more about the situation. You obviously can't discuss fully with anyone medical over weekend, but you can do a bit of research on web.
Also sure others more knowledgeable will chip in with their advice/experiences.
In the meanwhile keep calm, as Jane says they have to spell out all the details to cover themselves in all eventualities, most of which never happen! Getting in a tizz won't help you.
Hello DorsetLady. Yes, I have now looked online to read up but unconvinced. I would've preferred to be told face-to-face, rather than trying to absorb all this info. I will see my GP.
This letter came on a day when my microwave packed up, and the gentleman, a few doors down, died.
I was sure I would only have to increase Pred, and was even prepared to stay on it forever.
Oh dear, not a good day then. Yes I agree a face to face discussion would have been better, but time constraints rule I guess. Plus I don't think consultants always want to get in a discussion with patients, some think it's beneath them!
If I ever wanted a definitive answer regarding late hubby I'd always draft in my son - he's six foot odd, build like a you-know-what, and CEO of a company - and doesn't take prisoners! Strangely enough, he usually got the answer!
Absolutely DorsetLady. Pity Norfolk so far away from you!
This consultant I haven't even met!
Fortunately, I have a spare microwave, which I had actually advertised as free to anybody. Slight discolouration due to storage. When my cleaning lady comes Monday, will ask her to help me with it.
You probably heard him swearing at the Lions Test this morning! In good company there then - not too pleased. Feel sorriest for my daughter - she lives in NZ, and always gets flack when we (the home nations) lose to the All Blacks!
Hahaha - how funny is that - the consultant sending an answer to your son - goodness a bit shocking really. I also get that feeling that my consultants have a bit of attitude - you're just the patient and a woman.
You are apparently suffering from Addison's disorder - a situation where your adrenal glands are unable to produce cortisol in response to stimulation. And that also includes in stress situations of all sorts.
IF you feel ill you DO need to call 999 and tell them you have been on longterm pred and have been deemed to have Addison's disease, probably secondary to the steroid use - a paramedic will come, assess you and give you an injection if they feel it is warranted. Potentially you COULD become very ill and an acute Addisonian crisis - especially if you forgot your pred or were in an accident and no-one knew about it - can be a very serious matter.
Using hydrocortisone is much better than pred in this situation as it has a shorter half-life (the length of time it stays in the body) - for one thing it is more likely your adrenal function may return but it also better mimics the way your adrenal glands would normally produce cortisol: a dollop in the morning to get you going for the day, some about midday and again later in the day. That is why it is given 3 x daily. But apart from its shorter half-life it is the same as pred so there is no need to panic on that aspect. It also works as an anti-inflammatory and there are actually a couple of people on the forums who have been on it for PMR because they couldn't take pred.
I have to say - I am rather appalled you have been sent a letter with no warning at all about it and all couched in medical-speak. One of the downsides to being cc'd I suppose.
It IS a serious condition if unmanaged and unmonitored - but so are lots of other things. I'm also a bit surprised you say you feel so well - which of course the consultant probably doesn't know. But the figures are there. It isn't total adrenal failure by any means, but potentially could be a problem if you are in an accident, are ill, under severe emotional stress.
Thank you PMRpro. I read up a bit about Addison's before you mentioned it. I was hoping to carry on, as I am now.Although the letter says to taper by 1mg Pred, WEEKLY, until zero, could I still do the DSNS method? I will not be starting...if I even do..a new regime, until I have spoken to my GP.
I feel that after 12 years of Pred, for GCA, to re-start a whole new chapter now, on a whole different drug...all side-effects, mentioned in letter, is too much for me. I don't want to sound a martyr, but I am not afraid to die, so, I have a choice, don't I? Not everybody would agree with it, but when the light at the end of the tunnel is in sight, to then start the whole journey again, is VERY DIFFICULT for me to contemplate/accept.
Hopefully when you have seen your GP they will be able to explain everything to you. It seems bleak at the moment with everything else you have had going on. Side effects are scary for almost any drug if we imagine we will get them all. The best we can do at times is take little steps. Little steps. One problem at a time. Very often in life if we look at everything in one go, it is overwhelming for us. If we prioritise, digest and deal with that one thing and try to shelve less important issues, it is more manageable. I wish you well and please stay in touch. Many of us read the posts every day and are here to support you xx🌸
Thank you Elaine-W. I hope to speak/see GP tomorrow, although he told me he wasn't going to be available for a month...will have to be one of the others then. I would've liked the Consultant to talk it through. His letter did state that an Endocrine appt. will be made, so only hope it's not the customary 18 weeks.
I do hope you can discuss this with someone sympathetic - GP, Practice Nurse, whoever. That peak of 140.4 is not so far away from 150 - you need to ask what this implies.
Sheffield Jane hit the nail on the head when she suggested that taking the Hydrcortisone daily is similar to someone with an underactive thyroid taking thyroxine every day - you are just making good the deficit. You're not starting the whole GCA journey again, you're just aiming to copy what your body would normally do.
We are all thinking of you, so try and be calm, although we know it's hard.
Thanks Rugger. It's the staying calm, that's difficult. I have read that the more stressed you are, the worse you get...that applies to almost all of us, doesn't it?
Oh dear karools you do seem knocked sideways by this news. Please don't let it feel like the last straw. You have looked after yourself well for the last 12 years and you can do so again with the threat of this new thing. Whoever sent you this bunch of confusing paperwork is a total a**se. You need to talk to someone sympathetic and clear. Does you GP fit the bill ( mine doesn't, they seem to resent everyone at the moment). It might be a good idea to seek counselling. You sound as if you have been carrying too much for too long. I know how that feels! I finally came out of it and have known the best joy of my entire life in recent months. So come on, buck up, you can do this bit. We're all here cheering you on. 👏
Thanks Bittebitt. I hope I find either a forum/meet folk who also have it. Did your Aunt put weight on, and was she on a high dosage? I was hoping the new drug might be temporary, until 'normal' again. Appears not the case, if your Aunt lived with it until 93.
As Sheffield Jane said, Hydrocortisone replaces your natural production. Therefore you can' t compare it with prednisolone. And my aunt was hospitalized with addison's chrisis. She would have died the day after, had it not been for an old doctor who had seen patients who had got AD as a result of tuberculosis attacking their adrenal glands.
I think you got a standard letter with info meant for AD-patients. Your own production will probably start slowly after a while, but PMRPro can answer better than me. Anyway, my aunt recovered completely, and she regained her normal weight after being emancipated. She didn't have a moonface. She did have to take more hudrocortisone when she was ill, and she also had to eat salty food, as AD-patients lose salt. And that was about it!
You obviously have SOME adrenal function to have been able to get to where you are - if you had none you would have felt very tired a while ago. What is probably the case is that they are sluggish - and just are unable to respond to being stressed. That could still be because you are taking some pred - and being on hydrocortisone may persuade them to wake up. Some rheumies like to switch their patients to HC at 5mg pred - and it is recommended. By no means all do though.
PMRpro, I was shocked when I read, in the letter, about what is to happen, mainly because I feel so well, and wondered how on earth I could be so ill, if I didn't even feel tired. I go to bed at midnight, and , usually up by 8am, without feeling tired.
I also wonder why a synacthen test isn't done, at a higher dose of Pred? Maybe this would've been discovered sooner?
This is really a rhetorical question, but 1 which I am certainly going to ask the Consultant/Endocrine Clinic.
There isn't a lot of point above about 7 or 8mg - and often when you reduce the dose slowly enough function does return. But anyone with increasing rather than lessening fatigue as the dose falls should be tested.
Why did they decide to test you since you say you feel well?
PMRpro. In my early years of GCA, I remember my Consultant telling me I would have to have this test, WHEN I WAS OFF PRED.Never mentioned again. Last year, at 3mg Pred, and no problems,he handed me over to my GP.
I received a letter from the Consultant Physician for Endocrinology,whom I had never heard of, saying an appt would be set up for this test.
Impossible to say but the HC should replace the pred in all ways including for the PMR. It is mentioned in one lot of management guidelines I have seen that pred should be replaced with HC when the patient has got to about 5mg and the tapering continued providing adrenal function returns.
I've 'quietly' followed this thread but haven't responded until now since there seems to be a myriad of angles on your dilemma.
I can't speak from a medically / technically informed point of view (I wouldn't dare!) - but, from what I see and read here:
1. From what PMRpro says, your Consultant Rheumy seems to be 'on the case' in his caution about your situation and possible progress / risks in your context. It's just unfortunate that he hasn't couched this in terms that are more user-friendly and reassuring for you. Quite possibly he IS erring on the side of caution in view of your blood test results - and for good reasons if you indeed are at risk of an Adrenal Crisis due.
But, as many of us know, some Health Professionals just don't have the finer Communication / Empathy Skills that we would expect (or hope?!) for in informing, advising and guiding their patients on an stressful and unpredictable journey emotionally, as well as physiologically.
2. In terms of challenging / questioning your Rheumy's expertise, explanations and / or attitude:
All I would say is that you have every right to do this. Sadly, the EDPDS (Emotionally Detached 'Prima Donna' Syndrome) is still alive-and-kicking in many aspects of Professional and Service-Provider Life - from car repairers to senior health professionals... and more besides.
Either way, and for better or worse, nowadays the onus is often on the Patient / Service Consumer to ask for more clarification / reassurance if need be from Service Providers - and to escalate any dis-satisfaction to higher authorities / regulatory bodies if necessary.
If it helps: I suggest that you stand-firm with your Consultant in asking for a more considered opinion in your context when, as you say, you are feeling so well at the moment: but also wise to seek more reassurance about the possible ways forwards?
Hello MB. Thank you. I know everything you say, in this matter, is true, it's just that I can't get my head around it. No tiredness, but told am ill. In fact, I went to bed at midnight, was wide-awake at 6.25 am, took my monthly Ibandronic Acid tablet, and am online for the hour.
It seems to me that not only does the Consultant not explain anything, neither does the Dept. I rang twice, after receiving the letter saying I had an app. for this test, WITH NO EXPLANATION, OF WHAT IT ENTAILED.
I asked for a letter, and was told there was none! They only tell you bits on the phone, and only if you ask. I read up, online, what it actually entailed. I am going to mention this to PALS. I have been with this hospital for 17 years, and had many procedures/surgeries, and ALWAYS have had a letter detailing what would be happening.Sorry for the rant.
It IS about trust.I won't feel at ease, until this has been explained to me, face-to-face, and I don't think my GP will be the right person to do that.I now have to wait for an appt, with the Endocrine Clinic. Perhaps?, that's when I can hear what's what?
The experience I had might be useful to you when speaking to your doctor. When I was down to 4 mg. pred and my blood tests had been stable for over a year, I asked my rheumatologist to refer me to an endocrinologist for a synacthen test. The endocrinologist was adamant that a synacthen test done while I was still on prednisone was unreliable because prednisone breaks down at variable rates for various people and could still be in the system for the test and skew the results. She switched me over to hydrocortisone directly without any further tapering of pred. She explained that it was still a corticosteroid drug and the main difference was that it more predictably broke down in people so I would need a morning dose of 10mg. and late afternoon dose of 5mg. (roughly the equivalent of the 4 mg. of prednisone I was on). She promised me I could not have an adrenal crisis from the change (unless I had a sudden terrible stress or injury, of course), and that the hydrocortisone would give my adrenal glands more opportunity to function normally. I was worried, but found I felt more comfortable on hydrocortisone than I had on prednisone for the past 5 years. I was to stay on the hydrocortisone for 4 weeks and then have the synacthen test. The test showed somewhat low adrenal function, but of a sufficient level to advise me to taper off the hydrocortisone which I did over the next three months without any trouble. I have been off of prednisone for 3 months now -- remember my blood tests and my well feelings indicated to the rheumatologist that the PMR/GCA was probably no longer active. I still feel achy sometimes and worry that I might be headed for a flare, but I find that paracetemol takes care of that which reassures me it's not likely to be a flare. People on this forum have said it can take up to a year after stopping steroids to feel normal again. So as you may want to try the hydrocortisone approach, and perhaps a second synacthen test after a month or so of the hydrocortisone. Your second test may show improvement.
Hello cdeoncourt. I could hug you! It IS reassuring to hear of your experience with hydrocortisone. You seem to have good insight, as you, yourself requested the test.
What a marvellous Endocrinolgist you had! Everything explained.
So, you only took the drug , temporarily? I thought it might be for life? You HAVE done well. Did you have any of the 'nasties' mentioned in the warnings and guide-lines? i.e. being sick/going to hospital/injections?
I am sorry to admit I am really scared at what lies before me.
I am not prepared for this big change, and mull over it, constantly. It's all I can think about, so the stress and BP, is going up. A vicious circle.
I hope I can cope with it all, as you did. I am not, usually, a person who 'buckles under', but I am now.
HC really isn't any different from being on pred except you have to take it more often because of the way the body processes it.
IF your adrenal function doesn't return on the HC and you DO need to take it for life (which IS a possibility) you have to look at it as being like insulin for a diabetic or thyroxine in hypothyroidism. It is just a replacement therapy.
In fact we should ALL have been given the letter when we were put on pred. Whatever dose we are taking there is always a risk of a crisis if we are subjected to an intense stress - which is why we are meant to carry a steroid card and a MedicAlert bracelet is a good idea.
PMRpro. I had a l-e-n-g-t-h-y telephonic conversation with my GP today.Everything you, and others, have posted to me, is all correct. Sadly, I am not going to be taking HC temporarily, as is the person, from the U.S.A, He mentioned 20 years!!
From Wed, the plan is; HC am with present 2mg Pred for a week. Next week, HC and 1mg Pred. Week after HC only.Also midday doses and evening doses. If unwell, for any reason, 999, as you said, and get HC injection.
He said so much, my head is spinning, but says he is reassuring me that I will be better on HC. I asked about a flare/GCA headache returning when off Pred. Unfortunately, he dismissed that and said 'just' come to the surgery. I asked about weight, moon-face. No.
Then mentions diarrhoea, being sick. Seems to me I better be housebound for a few days until this HC 'starts doing it's thing'.
What I forgot to ask is; At present I take 1 Lansoprazole am and 1 pm. With the new'regime', should I continue as is?
He never once mentioned the word Addison's.However, what I read up online, matches what you, PMRpro, stated.
I do hope I haven't come across as a 'drama queen', because that is not my nature.
No, not a drama queen - a scared patient who hadn't been given the whole story.
I honestly don't know if you will need the lansoprazole - that's a question for the GP.
20 years? I'd have asked if that was how short a time he thought I'd live and wasn't that a bit pessimistic
Some HC side effects are the same as pred - but everyone is different so it will be a case of try it and find out. Side effects are mainly due to an excess of corticosteroid - and since you are using this as replacement therapy it should be a bit better.
Sorry to cut-across this thread, but it might be relevant to others here.
You mention that "Some HC side effects are the same as (those experienced whilst on?) Pred etc... / ...mainly due to an EXCESS of corticosteroid".
This was my dilemma, as posted here recently: I felt significantly WORSE (i.e constant, slight nausea, dizziness, general malaise) after 'upping' the Pred to 7.5 mgpd to counteract the continuing low-level pain / stiffness etc, and according to the best advice here. This was after 6 months of hovering at 6-ish mgpd +/- (DSNS-wise) with no improvement in the above symptoms.
Result?: After an adventurous (and usually ill-advised) 30% drop back to 5mgpd Pred to test my theory about the side-effects of the Preds being worse than those of the PMR symptoms, almost instant relief from almost ALL symptoms - and continuing after one month despite being more physically active than for a long time. Phew...! :
So, my 64-Dollar question is (?!): Can the side effects of the 'magic' Preds be (in some PMR patients' contexts) be 'worse' than the symptoms of PMR in themselves - and more detrimental to 'recovery'?
I know that Caution Rules in balancing the dual and conflicting dynamics of coping with the well-known PMR symptoms and the equally well-known (?..) side-effects of the usually recommended Pred treatment regimens for them. Clearly, 'pacing', healthy diet, avoiding Stress, etc make a difference too. That makes great sense in any health context.
At the same time, it seems that some PMR sufferers here are in the twilight about how to evaluate and manage 'Cause and Effect' either way in terms of the relationship between adequately / safely managing PMR symptoms and / or those of possibly 'over' dosing on the Preds - with equally miserable side-effects.
Food for thought for some of us here? I keep an open mind - as always...
I think you are mixing up what is going on. You had already reduced below the "physiological dose" at about 8mg and your body had started to produce cortisol again - you upped the dose and so suddenly had more than you needed floating around - but not a lot of PMR symptoms to sort out. The steep drop isn't recommended for tapering, no, but it is often suggested to people who are seeking to find out if their pain is a flare - add 5mg to the dose for a few days and drop straight back to the former dose - or very slightly above if the cause of the flare was overshooting and going too low.
You have to remember that not all aches and pains are PMR and inflammation related. They are the only ones that will respond to pred - many other sorts won't. Whether you like it or not, you are older than pre-PMR and, inevitably, less fit. And even so - everyone gets aches and pains.
All the way through a PMR/GCA journey you are looking for the benefits of taking pred (and any other medication in any other illness if it comes to that) to outweigh the disadvantages. In GCA the ultimate potential event in GCA is permanent loss of vision - which heavily outweighs the downsides of high dose pred. In PMR the long term potential of "just" PMR is far less serious - and for some people they will decide they'd rather put up with the pain than gain weight, for example. It's unlikely they are detrimental to recovery - but all they are ever doing is managing the symptoms. They aren't encouraging the disease process to go into remission. Tocilizumab appears to be doing that - but it also has potentially nasty side effects and is very expensive. If you just need a few doses to sort PMR then maybe it will turn out to be a good thing - in a perfect world money would be no object but this isn't a perfect world and a very expensive drug for a large number of patients suffering from an inconvenient illness which isn't life-threatening most of the time is unlikely to be considered widely.
They only combat the inflammation being caused by the ongoing disease process. It is likely the tocilizumab is actually having an effect on the disease process and causing it to go into remission.
It is like having a dripping tap that slowly fills the sink - you can stop it overflowing by scooping out the same amount of water that is dripping from the tap but you have to keep scooping. If your repair the tap the level in the bucket will stay the same.
You say it's a really pricey drug but I suppose one has to weigh up the cost of ones health. I hate Pred (am gratefull for it though) and the potential consequences.
I live in the UK but come from a country where one is more used to 'paying' for health care either through private medical insurance or just pay as you go.
It also leads to people considering alternatives as prevention or treatment - to conventional health care / medication.
I may look into it more and see what if any risks there are with it.
Interesting that you noticed that, Mark. I found on reducing using DSNS method that once I reached one day old and one day new I couldn't take the old higher dose again without feeling much worse! I have just nervously reached the every day half mg and doing okay, just a bit wobbly!
My best shot at why is that maybe, at a critical point in the reduction trajectory, the side-effects of the preds are worse than those of the (currently diminishing?) PMR symptoms?
But that's only my guess - let's see what the experts here say!
Yes, I took the drug only temporarily: a month prior to the synacthen test and 3 months following the test during which I tapered off at a rate a little slower than the endocrinologist suggested. I didn't experience any noticeable side effects. Most of the side effects I read about were the same as those from prednisone. Severe cases of Addison's disease (no adrenal function) may have more serious problems finding their best dosage of hydrocortisone, but you already know you at least have some adrenal function.
I live in the USA where it is now early morning and you are 6 hrs. ahead of me if you are in the UK. Perhaps you've already had your doctor appointment. I hope it went well (will go well) and it was reassuring for you.
Yes, I am in the UK. I rang the surgery, early this morning, to speak to my GP, but he hasn't rung yet. I didn't ring the Consultant, as he might tell me to speak to my GP, first. Will wait and see.
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