PMR for 3 years

PMR for 3 years

Hi I'm NOT new hear and was listed as PeTee70, just had to rejoin due to my error and computer problems. . I have had PMR for nearly 3 years and had various problems due to reducing prednisolone. Have been using DSNS method after getting stuck on about 10mg. slowly reducing now and am at 5.5mg for about 1 month. Fatigue now is greatest problem. Staying on 5.5mg to see if dreadful fatigue diminishes. I am fully retired after an engineering career in the aerospace industry.

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  • Ha! Don't believe him folks. He's an Imposter, I'll be bound...

    The truth is, he bumped-off dear old PeTee70 and has stolen his identity. Either that or he's a PMRGCAuk HU Mystery Shopper checking on the friendliness, quality and reliability of advice from You / Us Lot. Either way better be nice to him so that we all get a good score..? :-/ :-(

    Only joking - Welcome back Pete (OYAABILU)!

    'Loki'.... ;-) :-D

  • Thanks Mark, you've sussed me out πŸ˜‹ OYAABILU to you to πŸ˜‚ How many have you had already πŸ€”πŸ€— only kidding 🀑

  • Ha ha! Naughty Mark!

    Hi PeTee70.

    I'm not worried about fatigue because it is more laziness than genuine fatigue. As a single person living on my own, I have lots of things that must be done; I've contracted out the worst - like someone mows my lawns, grand-daughter does the vacuuming for pocket money. My son saw mud on my car and washed it. (I'm trying to make that a regular thing.)

    But say 'how about going out for lunch' and I'm up and there, boots and all. No laziness there!

    My family is scattered within 10kms from me; even the (older) grandchildren like having lunch out. This way I only put my energies to things I like doing - family, friends, playing petanque and - lunch.

    I'm on 6 mg prednisone (for GCA) reducing each month by 1gm. What a celebration that is!

    Keep well.

  • Hi Sondya

    I told members here that PeTee70 is Pastit. I will come back to you on the laziness bit. I'm too fatigued at the moment to write anymore. Just resting for a while πŸ˜€πŸ€—πŸ˜΄πŸ˜œ

  • lol

  • πŸ˜πŸ€—πŸ˜€

  • Are you feeling threatened (tongue in cheek) MB as another male has dared to post a full photograph of himself ha ha??

  • Oh yes, he is a bit of a show off. Only kidding , πŸ˜³πŸ˜€

  • Ha daw50

    MB and I are best of friends, or I was untill I insulted him 😜😬😰

  • Ha, daw50! Far from it - I like a bit of competition! :-) :-D

  • Cruel pastit, so cruel.... :-( :-D

  • Ha Mark,

    OYAABILU πŸ˜¬πŸ€—

  • Welcome back and behave yourself you two - no kidding - just spell it out - I am easily confused.

    Now the next bit is important.

    Synacthen Test to see if those adrenals of yours have woken up. So referral needed by Gp to an Endocrinologist. Best test I ever had, fell asleep and two hours later woken up with a cup of tea.

  • Hi jinasc, thanks for the welcome. Biggest task associated with your suggestion is getting a doctors appointment. I could fake that I am insane (won't be difficult) and they might take me off to the funny farm and give me a test there. :-)

  • Pete, I can give you a reference if it helps?! (but it'll cost you though..) :-D :-D :-D

  • Ha Mark, your begining to know me too much πŸ˜ŽπŸ˜€

  • :-D

  • jinasc, oooh! That worries me about requesting a Synacthen test, having read you fell asleep and was woken two hours later. Whaaaat? You have to be knocked out for it? No way will I have that done. The last time "they" nearly killed me. I had a simple gastric endoscopy under light anaesthetic, woke choking during the procedure. Heard panic call for suction. Next woke up in recovery attached to a drip and every machine they could find, two nurses telling me to take deep breaths through the oxygen mask strapped to my face. While under I had stopped breathing and my heart rate slowed to life-threatening. My system can't deal with anaesthetic or sedation. Due to see endocrinologist on Wednesday..........

  • No I meant that to read as follows; trying to save time.

    I went at 8.30am and took a book to read. The room was warm and cosy high-backed armchairs with about 10 people in it and a couple of TV's on the wall.

    Checked in, taken to a seat. Opened my book and started to read. Fell asleep and I was woken up with a cup of tea. They had taken off my glasses and put a marker in my place in the book.

    I was given time to pull myself together and the other patients said, 'happy you were not a snorer' and then on my merry way home following a pleasurable experience in a hospital. First time ever.

    We will not go into anaesthetics - I am called 'the medics nightmare' by my GP and Consultant.

    So please do not dismiss the Synacthen is better than and Adrenal Crisis.

    Long-term usage of pred and aging.....

  • jinasc. I am intrigued as to what kind of Synacthen test you had? That wasn't my experience, in June, at all. After 12 years of GCA and Pred, my Neurologist referred me to an Endocrinologist, when I was down to 2mg Pred. At this time, I was NOT TIRED, NOT ILL.

    I had just, successfully, tapered from 3mg to 2 on the DSNS method.

    I, previously, posted that I was diagnosed, BY LETTER, and ordered to come off Pred, immediately, and start Hydrocortisone, an evil far worse than Pred!.

    On the day of the test, I was the only 1 , in a room of 6, having the test. A nurse gave me a blood test, half-hourly. 3 tests and a zinger of an injection in my shoulder.Tea and sandwiches and long bus journey home. Diagnosis; Addison's Disease. I have been in denial, refused to take meds, and , finally, succumbed.

    After a 12 week wait, I have an appt. wth the Endo on Tuesday. I have put a stone on in weight, just like the early days of GCA. Same appetite. I found this invaluable forum, last year.

    Sorry for the rant.

  • The short synacthen test (which is what jinasc had) is a baseline cortisol blood sample at 9am followed by an injection of synthetic ACTH and a further blood sample taken 1/2 hour later. Sometimes they do a couple more samples but they aren't essential. In most places, a butterfly cannula is used so there is only one needle stick and the blood samples and the injection can all be done using that. That is how jinasc went to sleep in her comfy chair!

    I must say - your endocrinologist sounds rather uncaring...

  • Yup, spot on PMRpro, I don't know how many times they took samples.

    I slept through it all.

    The person who put that canula is was the first person who did it without any pain. I did ask her name, so I could ask for her if I ever needed another one.

    My Endo bloke was a Greek and when I went to see him, expecting the usual in out............I was there for three quarters of an hour. He wanted to know all about my journey with GCA. Lovely man.

    Never had any injection in my shoulder or elsewhere either.

  • Yes, Tuesday will tell. He is going to hear about coming off Pred like he said, and the diagnosis by letter. He appears to be the only 1 at the hospital I am going to.

    My appt was for 11am.

  • And I should have added - there are others on the forum with practically non-existent adrenal function and PMR who have been left on pred as perfectly adequate therapy. I would seek a second opinion if the consultation doesn't result in something more sympathetic.

  • Yup, that is high up on my question list for him!

  • Answer to PMRpro

    Yes it makes sense, it surely must be the only way to survive 😡

  • OMG.... scary...

  • I'm with you on that one Mark. Double scary! 😱😬

  • Hi,

    Welcome back!

    Himself and I were a bit worried about you! Needn't have worried, see you've been to a health farm and had a makeover!

    Fatigue is certainly a problem for lots, me included during my drop from 6mg to 3mg, but all you can do is go slowly, slowly- get adrenals checked if necessary as jinasc suggested - and be patient!

  • Thank you DL,

    you've sussed me out as well :-( photo was taken 3 years ago at start of PMR. You wouldn't want to see me now :-( hamster cheeks and puffy eyelids, good job I'm a male of the species. Us males are a tuff lot, I think I'll join Mark with his teddy behind the sofa, ha :-)

    Yes as far as the test goes, I will leave it another week to see if the Dreaded Fatigue subsides a bit. If it doesn't I will be more concerned.

  • Hi again,

    Mine lasted for almost a year - but it wasn't constant, only intermittent which is why I didn't bother with a test. But a pain in the proverbial nonetheless!

  • "almost a year" where you still reducing at the same time? or did you dwell a bit. Some days I am completely done in and have no energy at all πŸ€’

  • Hi again,

    Yes I was reducing - 0.5mg a time on my own taper which took about 5 weeks each time. A couple of times I stayed on a dose for longer- first time at 6mg when I was in NZ with daughter and other twice when I had a bad back - not connected to GCA, but a long standing problem.

  • Thanks for the info DL, I must try and be more patient, at the same time consider getting the test done if things get too bad. 😬

  • The advantage of having the test done at this level is that you know if your adrenal glands are CAPABLE of waking up and working. If they aren't it won't matter how slowly you reduce, they can't wake up. One top PMR rheumy likes to keep patients at 5mg for up to 9 months to achieve this - it is low enough for them to be stimulated but not so low you cant have a reasonable QOL and you are at less risk of an adrenal crisis.

    Whatever - if you are under any increased stress, of any type, then you are more likely to need some extra pred to cope than you were before.

  • This is very helpful PMRpro. My docs always tell me to get off Pred fast. I get far more useful information from the experiences you and others on this forum relate than from any doctor. It has taken me two weeks for the leaden feeling in my head to depart and for the first time in weeks today we'll go out for lunch locally. As long as I have enough energy to stay awake and not drift off ...... :))

  • "My docs always tell me to get off Pred fast" - then they know nothing about PMR. You need better ones.

  • Hi PMRpro I suppose the problem stems from the fact that being a somewhat a rare desese, the frequency of them coming across it is miniscule in there daily surgery hence there lack of knowledge. Sorry an obvious statement! 😱

  • GCA may be "rare" but PMR is the most common new-onset inflammatory arthritis in the over 65s. That means there is no excuse for not knowing about it if you have a proportion of over 60s in your practice...

  • Yep, would you like a job in the practice I attend. πŸ˜€

  • I'd have to come back to the UK! Thanks but no thanks...

  • Hi nevagivup

    I think we could form a club with members who get poor advice from 'professionals'


  • Wouldn't be the most exclusive club in the world...

  • 😍

  • Pete

    This is a really interesting thread - thanks :-). I've repeated it as a New Post for the benefit of others here - with a mention to you as the Originator.

    Yep, the DF really is a 'killer' (excuse the clumsy pun), and I can relate. I've also been dogged with it - who hasn't?! - throughout the last 2-ish years of PMR, to varying degrees and at different times, sometimes regardless of the best of Pred tapering plans, pacing strategies etc. And, yes, it really CAN get you down...

    Many of Us Lot understand more-or-less what the usual conspiracy of causes of DF are : Chronic AI illness / powerful drugs / the hazards of the tapering process / withdrawal symptoms etc: and that SHOULD help a little in the coping process (i.e. to feel less confused / guilty / desperate maybe?).

    But the real paradox / challenge (for me, anyway), is that feeling any or all of Wiped-Out / Demotivated / Zombie-like / etc. so regularly despite our best efforts can also be quite stressful Emotionally - despite having a logical rationale as to why. It's not necessarily a 'Man' thing (before the Aunties intervene..!) - I'm sure that anyone would feel the same regardless of gender or age, and even if the DF isn't associated with an even more serious illness.

    As is well-known, Stress is one of the main Enemies of PMR - and Stress is Defo a contributory factor in mental, emotional and physical Fatigue at the best of times. Mmmm....

    So, how to break the Vicious, DF / Stress / More DF / More Stress Vicious Circle? Well, no Magic answers (I wish!) but there's plenty of wisdom here at least (pacing, spoons / diet etc). These practical things can help a lot... :-)

    Maybe what many of Us Lot also have to do is to TRY to keep in mind (even when we have a break from the symptoms, as did I, recently) the reality that we DO have quite a serious and long-term - if not Life threatening - illness. And, that 'recovery' is usually an equally long-term and often unpredictable process - despite our best plans and efforts. PMR / GCA are not like the Flu or minor injuries / ailments, where we usually bounce back in a few weeks. But many of us already know that, don't we?! ;-)

    My best analogy for surviving PMR (not forgetting GCA) is to think of it as being like an unwilling player in a game of Physiological, Cognitive and Emotional (especially?) Snakes and Ladders - where the dice are sometimes loaded against us despite our best efforts and strategies to 'win' the game.

    So many people here seem to complain about the indifferent responses and / or negative / unhelpful attitudes and advice from their GPs / family doctors in how best to manage PMR and the steroid tapering process in the best interests of their patients, in context. All I would say to this is: if you are unhappy with your GP's approach to you and your PMR / GCA, push, push, Push for the reassurance / blood tests / diagnostics etc that you want - and deserve.

    On the Positive side, it's said that, for many PMR / GCA sufferers, the condition can and often does go into remission - eventually. I know that's little consolation to some of the long-term, hard-bitten and courageous PMR / GCA Veterans here, but it might give the rest of Us Lot some Hope in the meantime.

    As some of you might already know, I'm not a great believer in Hope and Belief being the answer to all things Medical, Mortal and Existential - but it can help us to 'Roll with things' in the meantime. And, of course, being able to have a few smiles and laughs on the Journey can't do any harm either ;-)

    Ok, that's enough of the serious (but important) stuff. In case you ask, yes: the wine's open here at Benjamin Towers (never before 7 p.m.) and a good, hot, Man-sized dinner in the oven (eating and drinking lots and well - essential for treating Man Flu). I'm Home Alone - Teddy's out on the town (again!) and says he's 'on a promise' with the Barbie doll he met last week at the supermarket...

    Oh well, some people get all the Luck! ;-) :-D

    Keep smiling All

    MB :-)

  • Hi Mark, Sory for late reply but living up to my name I lost it 😟 but by way of an update I have got an appointment with a consultant Endocrinologist 6th December at 14.00 hrs. No mention of a test to see if my adrenals are capable of working.

    I despair sometimes πŸ˜•

    Pete πŸ˜€

  • Hi Pete, no worry.

    Sounds positive about the Endo appointment :-). I can only assume that it will be for some more in-depth discussion and hopefully tests including a 'short' Synacthen / ACTH test for such?

    But I know what you mean about (some) medics' and their comms skills...! :-/

    Getting busy here with prep for publishing THAT 'Funny' (allegedly) book by Xmas. Lots to do, but dipping in and out of here in between.

    Keep smiling and catch up soon

    MB :-)

  • Hi Mark, I'm looking forward to the book. I assume that you will retire on the proceeds. πŸ˜‰πŸ˜΅πŸ˜ Only kidding.


  • Thanks P. Ha, I wish ('retirement')! But then again, I'd probably get bored without something to turn my mind to.. :-)

  • I can still be 'done in' some days and that is because I am now 11 years older, 5 with GCA and 6 in remission. And a subsequent op and a/f.

    My Mam used to say, 'try and avoid getting old, it brings unwanted friends'. Mam was always right, damn it.

  • Sorry to hear that jinasc, it's the frustration of not being able to plan various events. I must be more considerat of others on this tedious journey. A lesson well learned 😡

  • Pastit

    Please don't be sorry, I found many new companions and also found that my long term close friends where more special than I had ever imagined.

    I made more friends (some of them now very close) and that is a joy. I had found that as I was getting older that did not happen, then GCA came along. It came with it bad times, but the good times outwieghed the bad. Special people appeared in my life and have stayed. A continuous on going unexpected bonus.

    If that does sound odd, I liken it to starting to 'march to a different drummer' and that has taken me to places, thoughts and benefits I would possibly never have experienced and laughter.

    Planning is a joy, so even if you have to cancel at the last minute, there was enjoyment in the planning. Stuff happens. C'est la Vie.

  • Ha jinasc

    C'est la Vie. indeed. I have been out all day with OH and had great day πŸ˜€

  • Hi some of us were beginning to wonder what had happened to you so it is great to welcome you back !

  • Thank you Jackoh, it's good to be back and I didn't realise members would have noticed I was missing. It makes me feel very humble to read your remarks. I had an impromptu day out today because I actually had more energy. Strange creature this PMR/GCA 😨😡

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