good morning, just a technical question this time. Yesterday I went to the endocrinologist, after my gp reluctantly gave the green light. she took her time and listened, and her suggestion is ( it was more an order) to take hydrocortison 20 mg for a week, and one day nothing and after that a bloodtest (baseline) In a response to violetsnowdrop PMRpro said, a baseline bloodtest is not enough. I don"t think the endo is impressed if I say, PMR pro advises against it so my question is what arguments can I bring in for a synacthen test, and is there a possible outcome of the baseline test where no further action is needed? Have a nice weekend all, and for the Uk people, with some turkey leftovers? we have no thanksgiving, but all the shops are full of black friday offers.
synacthen test: good morning, just a technical... - PMRGCAuk
synacthen test
I have no idea about the test but unless you get turkey no one should have to deal with Black Friday craziness! In the US The Walmart shoppers trample over eachother to be the first to get some horrid toy! Haha
yes I have seen it on the news, people fall and stumble while in a hurry to buy something as if they are starving and it is bread.
I’m delighted with my Black Friday savings. I saved loads of money...I stayed at home! 😁
My Synacthen Test involved gettinga baseline figure then being injected with an Adrenaline stimulating substance, waiting 30 minutes and then having more bloods taken, to assess the effectiveness of my Adrenal Glands. The result showed that they were not at full capacity. I have been told that there is a good chance that they will recover in time. You are supposed to be on a dose of 5 mgs Pred or less. Tell us what they do with you?
Thank You for giving your example. This time there is no Synacthen test involved. To be continued ....
This is very interesting to me SheffieldJane as my Rheumatologist had a word with the Endocrinologist who won’t give me this test until I’m on 4mg or less. I was on 5mg (Oct) at the time of seeing my Rheumatologist who was happy to arrange this test. But no them from about said not good enough. I got to 4.5 in the last few weeks with the blood review in three months around the middle of January if I met the criteria of 4mg I will get the special test. All well and good but I feel rubbish as I reduce. I’m not in the pain that PMR showed itself originally although I’m in pain from other issues and is hard to distinguish what what. I must admit my upper arm pain hasn’t returned, CRP and ESR is low, that means nothing I know but I feel so very tired and generally not well. Been on 4.5 for a month now. It’s hard to get any enthusiasm with anything but I’m supposed to solider on for another couple of months on 4mg, if I get there, have bloods wait for Rheumatologist to speak to Endocrinologist before a test to see if my Adrenal gland is working. Oh this is so hard. I did try a pick me up of a couple of days cheating with 10mg pred before reducing back to 4.5 it was lovely to feel slightly normal. I felt guilty though. So I’m struggling!
The Endo seemed to suggest that most of these “ unwell, exhausted symptoms” come from the Adrenaline lack. Presumably it improves over time. I can relate to all that you say. I do not appear to be any further forward now that I have the numbers. Keep in touch. Perhaps you, York and I need an offshoot group. The fading away group, I’d call it. Xxx
Trouble is these specialist only work on text book rather than human input. In my case if I could only get off the steroids think my PMR has laid dormant for a long time. It’s difficult to say until I can reduce down bit it’s easier said than done. If the Adrenal gland doesn’t ‘wake up’ what happens then any idea? Weirdly I can have a really horrible day or even week then suddenly I feel quite good bit more energy not so morose, for a day maybe more for no apparent reason its back on the down spiral again. I know I’m not the only one but as individuals we live alone in the real world with this condition unless we have friends or family with it but on here we are a family who understand. The real world is hard to deal with sometimes. Thank you for your quick reply.
I get sudden bursts of energy and happiness that remind me of what we have temporarily lost. I wish I could harness it. It seems to be random.
Glad I’m not alone I think sometime it’s just me.
"If the Adrenal gland doesn’t ‘wake up’ what happens then any idea?"
You stay on pred or switch to hydrocortisone as a replacement therapy - like thyroid medication. If they decide your adrenal function is shot it takes away the pressure to reduce for the PMR as pred covers both eventualities. The point is that at less than 5mg it isn't making any real difference - reduce pred and the body must make more cortisol.
Thank you for explaining that to me. I’m already on thyroid meds. How can you tell when the Adrenal gland starts working other than feeling a bit more ‘with it’? Is it a slow process? I can’t remember being energised for years or ever again. Sorry for all the questions
How are they monitoring your thyroid meds? Pred suppresses TSH so if they are going by that you may well not be on enough thyroid replacement. The TSH is lowered so they think it is OK, without the pred it might be higher, showing you need more. As you'll know, that might help!
Full return of adrenal function is felt to take up to a year even after stopping pred altogether - it isn't by any means instant. It also tends to fluctuate as it is a very complicated feedback set-up that has to get its act together and it swings about a bit on the way.
There is little or no feed back on my thyroid from the GP. It was just not quite within the perimeter so was put on a low dose of thyroxine 25mg per day. I’ve been on it about 9 months or so. Everything is done by the stats of what they should be and then given according to bring them up or down. Mine was borderline so was offered the option, as if I would know! I can’t remember having much energy for quite a few years I must admit. I took diclofenac for 16 years and when I stopped around the summer of 2016 pain set in many places and I thought that would happen. But then one day about a couple of months later I got severe pain in my upper arms overnight and was imbolised for a while. It was difficult determine if my legs were affected as I had pain there due to spinal surgery for a long time. Doctor put me on Pred 15mg in the January after my Pain management consultant suspected it to be PMR and in 4 hours I could move without pain my upper arms. Amazing. Bloods were normal but as it was working I stayed on it and felt the best I had for years. Few months down the line my CRP and ESR levels got higher. But it’s back down again and is as low as 2 at the moment.
I was interested to see your response to this as I had a Synacthen test 2 weeks ago (I have had GCA and PMR since July 2015 and currently on 6mg of Prednisolone and 10mg of Methotrexate injected weekly) I have been advised that the results of this test "are consistent with a degree of adrenal suppression and that it is unlikely that I will be able to stop my steroid medication and suggesting a maintenance dose of 5mg". I have interpreted this to mean that my adrenal glands will never return to normal function and that I will be on steroids for the rest of my life. If this is the case... to say I am disappointed and frustrated is an understatement, as I honestly didn't think it could get any worse!!
Any words of your wisdom will always be gratefully received, thank you
Difficult to say without a lot more info really - I'd want to speak to an endocrinologist about it in that case, that is no real diagnosis, just a lab report. 6mg is still slightly high to get much from the test - obviously your adrenal glands are still working but not as well as normal. But that is pretty consistent with still being on 6mg pred. There is no reason why you can't keep trying a reduction, very slowly, and see how you get on below 5mg. THEN have another synacthen test once you are well below if you can manage it. And see an expert - not just a sheet of paper...
I really don't see it as being "worse" - as we age our adrenal function drops away anyway. I suspect there are many people who plod along never knowing their adrenal function could be better - you do at least know about it.
Dear PMRPro
Thank you so much for your response, I really appreciate it and you have definitely put me "back on track" with a positive plan to pursue... I feel better already 😊
Take care and thank you again for your support
I feel your pain. Trying to reduce I have the same symptoms. It’s like your life is on hold. The mental pressure brought on by physical restrictions is so distressing. I feel like a Pred addict. I want the pain and lethargy to go as time just seems to slip away.
Things will get better one day.
Thank you it’s nice that I’m not going mad, sometimes it feels like that. You begin to wonder is it the condition or the medication or perhaps something else that’s not right. It’s the lack of cosistancy that gets me down. I can get up feeling fair to middling arrange in my head what I’m going to do maybe a trip out somewhere then I get out and within a short time I’m tired, hurt in my body and want to be home laying down. This is not a life anymore.
Sorry I didn’t read your query properly. My baseline Cortisol was 223 and following the test it had risen to 395. The minimum they look for is about 430. I was told that “ I have a more than 95% chance of recovering my axis”. Meaning a normal function I guess. The outcome has been involving an Endocrinologist. Who has said that I should reduce my Pred to 5 mgs alternating with 4 mgs for 2 weeks and then if I am ok to stay at 4mg for 4 weeks. Then alternate with 3 mg for 2 weeks and continue on 3 mg until I see him. Presumably there will be another Synacthen Test.
The last paragraph in his letter says. “ The patient during the weaning process should be aware of the “ sick day rules” as the short Synacthen Test is showing that she might not react very well to stress”. I have passed this around my housemates!! Endocrine nurses will be in touch about managing this.
So in a sense, I am not and hopefully never will find myself on Cortisone for life.
I cannot comply, having flared in the meantime and am now on 8 mgs. I had very definite pain and mobility problems not just deathly fatigue, nausea and dizziness. So, a bit stuck.
dear Jane, that is really helpful. I have been reading about your road to zero, and the flare, since I follow you from over the sea, the channel in this case. I read between the lines about your being stuck, it would be a lot easier when the illness had an end date, so you knew what to expect. In Holland there is a sign for cyclist to attach to your bike when one hears poorly, maybe we should invent something with,- take care, don't stress her/him and be kind for us-. Hope you can continue your way down in due time. Are you still in Edinburgh,
being out of the way of the builders? I like the town very much and will be seeing it in two weeks, on my way to Saint Andrews, where my granddaughter will be receiving her master. Live is a mix between dark and light is it not?
Jane, I have had a similar experience. Was on 5 mg for a few months, had the test, mine spiked at 415. The letter told me not to reduce without advice also about the sick day rules. Since then I have flared , so went upto 10 mg for a few days , am now at 7 mg. still a bit stiff in the mornings, my hands and wrists especially. Gets better as day wears on, but feeling really tired again. I'm staying at this dose now till after Xmas. Rang the rheumy said secretary twice to ask for advice, my appointment shifted from October till next February. She said she would email him and he would contact me, however no call yet!! Couldn't be in pain, hence my pred increase decided by me. One step forward, 2 back with this blinking disease!! 😏😏😏😏
Sounds so similar. Keep in touch! What are the sick day rules?
If you are ill , temperature, flu operation etc, you have to increase your dose. If you have a sickness bug you need pred another way, leaflet says to get in touch with your health carer! I have been on pred many times in my life due to other autoimmune illnesses , never been on it so long before!! I had to have a root canal done on our way to NZ , 9 years ago, besides the antibiotics the dentist told me to double my pred on the day.
Hope you feel much better soon Jane. Will keep you up to date.👍
That is helpful! So when I see the Endo and have patently not followed his brutal reduction plan, I can say “ sick day rules”! Do you go straight back down or is it a struggle?
I only did it the once for the dental work, went straight back to my current dose. I expect that is to cover you whilst the stress is immediate( I'm always stressed at the dentist even for a check up). I never knew about sick day rules until the endo nurse gave me a leaflet!! Haven't had to use it yet!! 😏
Does the stress caused by your daughter’s, in-laws,messing about with Christmas arrangements count? I would rather have dental work.
I'd say yes - and really not just for a single day/dose. I won't say what I'm thinking about them...
I have posted a pic of the leaflet. Will only let me post one pic at a time!!
I get very stressed with family stuff, I'm sure that is why I'm flaring now, plus I lost my dear friend. It all adds up, affects my sleeping and when I'm tired I feel much worse☹️☹️
I am sorry that you have lost a dear friend . 🌸
Thankyou x
Oh how proud you must be! The red gown of St Andrews. Have a lovely time. Wrap up warm.
I could have a neon sign and my family would still give me stress, I am sure. Although my son is being very kind. The scaffolding is at last down from the outside of my house. I feel like a bird that has been set free.
Life is certainly a mix between dark and light. Maybe we wouldn’t see the light so vividly if we didn’t have the dark.
hi Jane, I asked my granddaughter about wearing the gowns and she told me as a post graduate she has a black one to use on special occasions. but perhaps you knew already
My school teachers wore their gowns to teach in. I used to love the splash of red from Miss Murray’s St Andrews gown.
But St A's graduate gowns are black. Red is solely for the undergrads - was she admitting something?
Miss Murray was a fraud in plain sight. Fancy that!
Let her try that first - it will do no harm and she may find your cortisol level is pretty low anyway. It won't tell her if your adrenal glands CAN produce cortisol but she is supposed to be the expert so let's give her the benefit of the doubt for now! Not that I am particularly impressed by so-called experts this week but that is another story...
No - Thanksgiving is a US celebration so no turkey this week, that waits for Christmas! Black Friday is a cynical marketing ploy to get people to spend money they don't have on things that probably were cheaper a few weeks ago and will be cheaper the week after next! I really don't understand what makes they think there is more money to go round just because the so-called offers are there longer...
Apparently a couple of years ago there were those sorts of scenes in the UK on Black Friday - but none were to be found this year. A big Tesco opened early to smooth the crowding - and there were more staff than customers! I have seen signs about "Five days of Black Friday" - which seemed a trifle strange but there doesn't seem to be much here. No tourists, no sales...
thank you for expert advice. yes I ment US in stead of UK slip of the digital pen for the turkey. They just want to have your money even before buying the Christmas
presents. In Holland there is more advertising every year for black friday. We like to keep up in the world, being a small nation.
No!!!! That is one tradition you really don't want to import. Stay sane.
Hope all goes well for you.
thank you, hope all goes well for you as well. I am not much of a buyer, and certainly not in big shops. Stay home at the 4th friday of november like GerriMc. Once I bought a very cheap ferry ticket to Bergen, the fjord line, though at black friday.
I wish we would realise that we are a small nation and stop punching above our weight. I wish a lot of things!
England certainly has punched above its weight for centuries.
Like those tiny dogs that take on mastiffs. We should be like discreet little Belgium.
No, no, I meant tiny England really has punched above its weight. It changed the entire world! It's language is one of the most spoken on the planet. It's form of government has birthed other democracies. Complain as we might about the disintegration of modern society the legacy of little England is immense and beyond price.
I am not very proud of my Country at the moment. It is having a prolonged silly season. Some of our legacy doesn’t bear close scrutiny either. It is however, very sweet of you to be nice about it.
Same here in Canada. I don't know if it's having much effect. I think people look for bargains for things they are going to buy anyway. Isn't Thanksgiving now bigger than Christmas in the US? In terms not just of spending money but getting together with family and eating too much?
PMRpro might just shout at me, but I can withstand that shout and it might just be a bit of info for you to keep in your locker.
PMRpro has a 1st Class Degree in Micro Biology and studied at St Andrews. Worked in NHS for over 16 years etc. I won't say anymore except that the contribution to research into PMR and GCA exceeds all my expectations and that as a PMR sufferer for a very very longtime and no remission yet.
We met at the launch of a DVD called 'You are NOT alone' nearly 12 years ago. A very serendipitous meeting.
Good we know that, hope pmr pro agrees. So she knows the place were my granddaughter lived for a few years. And I am fully aware of the professionality of PMR pro, it is proven in every answer to us.
Yes, I spent many happy hours down on the beach between lectures. 
You didn’t marry a Prince though - or did you?
Ummmmm... Don't there was one available at the time. Plus I'd been married a couple of years by then. I don't go in for exaggeration but he has some positive points...
So has my Buttons, 🙂
( UK pantomime ref.)
That's what ours earned in comparison...
🙂 You got that one right!
No, I won't shout at you - but for accuracy: Honours yes but First not (I wish) and physiology, done in the medical school so very whole-body orientated rather than cellular level. These days they do everything at the smallest size they can - so maybe some cell biology would have helped but I'm so old they hadn't really got round to that in those days...
Old my foot, you know how old I am ..............you are a youngster to moi, I could very nearly be your...........granny (no I can't add up either
I wrote first because I could not be bothered to get up and look in the book and Joan needed some help.................the joys of life...................😄 don't you just love it..........
I asked a doc about this and he said "What on earth for? if your adrenals weren't working properly, you'd have never got to the Health Centre" So, no sanctioning of the test for me.
what a silly answer. ask again, summoning up all arguments, best on mail. insist if you can. In the end my gp says yes. good luck
I had a synacthen test when I was down to 5mg pred. All seemed to be working fine so I got down to 1mg pred and felt yuk but no specific symptoms.
Was looking forward to joining the zero club then slightly raised CRP was investigated and I was found to have return of GCA in aorta and all other large arteries. So what were my adrenals up to. Gone rogue again.
Moral just 'adrenals working' wasn't any real help.
Granny b that must have been a big desillusion. Hopefully you find your way to a better health, but it is not all up to ourselves is it. Wish you all the best
I have had that test. I was on prednisone for over 20 years they stopped it and gave me the test. They found my body doesn’t make enough steroids to keep me alive. I am now on 25mg hydrocortisone daily. This keeps me alive. If I get ill I then have to take extra for a few days. It is dangerous but can be controlled with hydrocortisone x
Important that you have taken the test and there is hydrocortisone. Thank you for sharing.
I was already on 17.5 mg hydrocortisone for three years before I was diagnosed with PMR.
It was for adrenal insufficiency. It's not so bad. I wear a medical bracelet with that info on it. Probably I should get another bracelet for prednisone, in case I get into a car accident.
I'd have to take more to prevent shock. Other than that it's not such a big deal. The 17.5
mg of hydrocortisone is approximately equal to 4.4 mg of prednisone, so when I someday
reduce the prednisone to 5 mg I'll just switch back to hydrocortisone I guess. Also was
already on thyroid replacement with my TSH between 1.0 and 2.0 and taking time-release
T3. Haven't had fatigue with PMR unless I "overdo".
hallo gaqke, never met you on this forum, so if you are new, welcome. As you can see it is an interesting and multifaceted society. It seems as if you found your way with the disease. have a good day where are, in Holland it is cold and grey.
I am in Massachussetts. It's cold and gray! I was diagnosed just a few weeks ago and found this forum. It's so informative. Thanks, guys for doing this, especially PMRpro.
I'm prepared to meet a rheumatologist for the first time on Dec. 18.
yes to me it makes all the difference to have the forum where we can support each other. Hope you have a kind rheumy, and prepare, perhaps write down your questions, since this disease can be very enigmatic.
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