PMR and The Lighter Side - The ‘Boss’ holds Delicate Negotiations with the Adrenal Department

So, enough’s enough. As the 'Boss' around here, and after 12 months with PMR, I need to re-mobilise the Adrenal Team after their long lay-off. But how best to do it? I decide to have a chat with Ade & Des (the ‘Guyz’) in the Adrenal Department.

Me: Good morning Guyz, Wakey wakey! I need to have a chat with you.

A&D (grumpily, in unison): We’re not playing. Go away.

Me: But they (the medics) said you’d wake up eventually. You’ve got lazy. Back to work now, please?

A&D: Not lazy, just keeping our heads down. Chucking that, er, Prednerlisterstrone (or whatever) stuff down your throat every day. You took our job away from us - what do you expect?

Me: But they said if I stop the Preds and give you any nasty shocks you’d go into some sort of ‘crisis’ and shut down the rest of the organisation. I can’t afford for that to happen - lots of people depend on me.

A&D (indignantly): Hum. We might only be a small department but you depend on US more!

Me: Well, I had a chat with Pete (in the Pituitary department) Tim (in the Thyroid section). They’re doing their job and don’t know what all the fuss is about.

A&D: But none of you understand OUR job. On-duty 24 hours a day, and no holidays for 59 years. Regularly overworked, and then made redundant with no warning. Not even a Thank You. We have rights too..

Me: Well, I was very busy last year and then quite ill with PMR. I only brought in the Steroid Guyz to help out. As your Boss, I depend on you.

A&D (angrily): It’s all about You, You, You. What about US?!

Me (sensing the need for some delicate negotiation here): Ok, how can WE resolve this together?

A&D: Mmmm, we like our job here but we need better working conditions if we’re going to return to work full-time.

Me: Ok then, no guarantees but what are your ‘terms’?

A&D (Assertively): First, we need a more relaxed Boss who doesn’t race around everywhere like a blue a***d fly and ignores our needs. Second, we need to be listened to when we’re over-worked. Oh yes, and third, we need a gradual return to work - otherwise, no deal. We can be tough cookies.

Me: Ok, I’ll have a chat with Myself, the Steroid Guyz, and all the other Departments. Maybe we need to work together better as a Team?

A&D (sarcastically): A Team is only as good as its boss, er, ‘Boss’.

Me: Mmmm, do we have a deal then?

A&D: Provisionally. You do your bit, we’ll do ours. We’ll let you know day by day. But don’t pull any more tricks on us. Nothing is agreed until everything is agreed..

Me (in flattering tone): Guyz, you’re tough negotiators - but I respect this and value your contribution to the organisation. We all need you and appreciate the work you do here.

A&D (in conciliatory tone): Ok, from our side, we’ll talk with the Guyz in the other departments. Maybe we can work something out to spread the workload..

I close the initially tense meeting with the 'Adrenal Guyz' with a sense of relief. Things have gone well, so far, and I swear that Ade and Des have already sent me a little 'gesture' of goodwill energy-wise. In the spirit of truly productive negotiations, the various sides are at least talking to each other and understand each other’s point of view. We have agreed a way forwards, and to review things regularly as a Team. Phew… the entire organisation depends on this.

More important, and as a ‘Boss’ in any context, it reminds me that you are only as successful as the goodwill you create in your Team - and not the other way around ;-)

Happy Days all :-)

59 Replies

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  • Yup, been there and been having the same discussions with my team - the exhaustion is the last thing we need and especially tough when trying to keep a business running. - there is only so much you can delegate. In this stage I have found that taking adrenal support products have helped a lot. My doctor had told me to take them before the PMR hit, but of course I was too busy to listen. Idiot! I think my adrenals have been kicking in and out since I got under 5mgs pred, so I take the adrenal support twice a day now. I feel on a more even keel and am definitely feeling consistently better and losing most of the tiredness.

    Hope you feel better soon.

  • Thanks Queenfisher

    I get the same feeling re the adrenals - a bit like an old car slowly spluttering into life again after a lay up? Progressively, I feel a little better fatigue-wise now down to 6-ish mgpd and with the odd hike in dosage for flare ups. Interesting what you say about adrenal support products, can you recommend any particular ones?

  • Yes, I will PM you the info on the one I take. It is a natural supplement and was prescribed by my doc. I am in U.S. and I buy it over the internet, so hopefully you could too- or else find something very similar.

  • That's great, thanks Queenfisher :-)

  • Queenfisher - can you please share with me what it is you take?

    Many thanks again.

  • I seem to think that the B vitamins are supposed to be a good support for the adrenal's ?

  • Queenfisher - I did not think it was recommended we take any adrenal support whilst being on steroids at all??? I am on the equivalent of 3mg pred and would welcome the opportunity to go back to taking Ashwaganda (a wonderful anti stress herb) as I did pre PMR & steroids but did not think that by the feedback from folks here that we should be doing this as it could interfere with absorption of our steroid meds??????.

    Appreciate your thoughts please.

    Blessings

  • Hi Megams, yes it is not good to take anything that will boost the immune system as that will counteract the pred. However, I gather from my natural medicine physician that this works differently. I have no experience with Ashwaganda I am afraid so cannot comment on that specifically. Perhaps best to run that one by your herbalist/ physician. I will be happy to PM you the product I am taking.

    All the best!

  • Do you think Ade and Des will be happy with me, ? I laid them off 16 years ago, and desperate to get them back, I promise to be nice to them and do as I'm told, as I don't have the energy to argue. I'm waiting for an Adrenal test which may upset them !!!

  • Maybe they've got the hump with you, bowler?! Ade & Des can be quite a stubborn pair in negotiations with the other departments - as I'm discovering.

    Fingers crossed for your test, hopefully it will make them feel wanted again :-)

    MB

  • Thanks markbenjamin57,

    Depending on my results, I may need them to come back part time and do a little maintenance, and will promise not to upset them with too much of the devils drug.

  • Good thinking bowler, offer them flexi-time or job-share perhaps? Know what you mean about the drugs, but with PMR (not GCA) it's the lesser of two evils perhaps?

    Keep smiling on the journey

    MB

  • Unfortunately - if they take the total hump and refuse to come out of retirement - it is the "devil's drug" or one of its friends you have to take on as a locum replacement.

    So I wouldn't offend it too much either...

  • Just a joke/banter in reply to markbenjamin57

  • I did say in one of my posts [ 4 hours ago]

    that depending on my results that I may need the steroids on a maintenance dose, [which I already knew,]so wouldn't upset/offend it too much.

    Sorry about my sense of humour, but I would't be without it, it's kept me going for all these years

  • No worry bowler, I got your drift! A healthy SOH can help us all on the tricky journey of PMR. As you say, it's one thing that keeps us going sometimes!

    Best thoughts, stay with the banter :-)

    MB

  • My comment was also meant to be rather tongue in cheek.

    Why don't we have emoticons on this site?

  • H Mark,

    Good to have you back here. Interesting post!

    And Hi to everybody else.

    I have a question. Or would be interested in anybodsy view on this.

    I am two weeks into 10mlg pred since diagnosis, and it looks like they want me to stay on this for 3 months. Since my diagnosis, I'm very pleased to say that my symptoms haven't been to extreme.

    I have really cut back on the running in favour of walking. I do my normal household chores and bits and pieces in the garden without toooo much trouble.

    I am sleeping quite well.

    On everybody's advice here I've been reluctant to push myself to much. And I am so grateful for that because, had I not had that advice I am sure I would have been pushing myself much harder. So thank you all.

    I have kind of noticed that if I do to much one day, I feel a little more tiered the next

    (Or am I imagining this, I'm not sure yet) sometimes you can tell yourself that it's your age. I'm coming, slowly, to the conclusion that this is probably not the case.

    I did notice, this morning that my hands felt a bit stiffer. I also felt that there was something lurking behind the vale of the steroids.

    Any-way, to my question.

    What is likely to be happening to my Adrenal glands?, come to that any other part of my body? at the moment, on my 10 mlg pred. Am I knocking them out?

    That's a depressing thought!

    I'd be interested in your opinions.

    Ron.

  • Until you drop to 8 or less your adrenals are on holiday. I agree about the tiredness catching up the following day. Always good, if possible, to build in a rest period every day. It sounds like you are managing things very well. I was wiped for a couple of weeks after descending to 4 mg, but just the day before yesterday I felt a definite increase in energy, and even in muscular strength - did fifteen "proper" push ups whereas for I while I'd struggled with ten - so there is light at the end of the tunnel and I don't think it's a train!

  • If I remember correctly, you were moderately active before PMR, about 3hrs of exercise/week or so. If that is the case, I would suggest to start slowly and try to get back to the same routine as soon as you can. It is true that PMR will limit your activities, but it is also true that the longer you wait, the more muscles will be lost. Use caution, start slow and increase load every 2-3 weeks. I was able to get back to my pre-PMR activity level after 6 months or so. Just listen to your body and be aware of changes. Any "pain" or tiredness from exercise should be gone in 1-3 days...If it is not, then something else is causing it. Good luck.

  • Hi Nick,

    Sorry I haven't replied sooner.

    I read with interest your comments, thanks for your contribution.

    As you may have seen, I started having symptoms in early March and was diagnosed two weeks ago, on 10 mlg pred, so it's early days for me yet. I have reduced my exercise by 50%, so where I was used to running 4 mile 3 times a week I'm now trying to do 2miles (I did 2 miles yesterday and felt good after)

    I'm doing half press ups, lifting really reduced dumb bells, and listening very attentively to my body reaction.

    Nick I have no idea of your back story, even weather you are male or female. You may want to keep your story private, and of course that's fine. However, if your willing, a few questions spring to mind. either on PM, or here. let me know how you feel before I ask.

    It is interesting comparing. notes.

    Regards Ron.

  • I usually post on different forum, not much here. I am male, 67, diagnosed with PMR in December 2015. By January I started slowly walking, and stretching activity ( mainly because I had to walk the dog). I noticed that after walks I felt much better, so I started extending them and after couple of months I was walking 3x a day, 5-6Km total, 7 days a week. In parallel I started mountain biking and swimming ( left over from triathlon days). It took me about 6 months to get back to pre-PMR distance and times. I can say I probably regain 90-95% back. I put similar hours/week ( 2hrs of biking and 1hr of swimming) as you do. The key is to do it slow. I am not sure if you use HR monitor, but it is important to stay at the intensity level that you can have a conversation ( sentences, not just word here and there) 80-90% of the time. This is called recovery exercise, or LSD training ( Long, Slow and Distance). Only 10% of the time I kick at the much higher level, close to maximum, some call it interval training. This will, over time, get you back to previous shape.

    I hope this covers most of the questions you have. If not, just ask.

    BTW.. I started at 15mg, and now I am at 7.5mg in transition to 7mg.

  • Hi Nick,

    Thanks for your reply.

    Just to alert you. I have placed a message on PM as some of the details relate to you, so I thought it more appropriate to put it there.

    Cheers Ron,

  • You aren't really "knocking out" your adrenal glands - it's a bit like the central heating boiler: as long as it is warm enough at the thermostat it doesn't switch on, as long as there is a high enough level of corticosteroid present in the blood the very complex feedback set-up that governs the function of the hypothalamus, pituitary and adrenal glands notes there is no need to produce more, there is enough to cover the essential requirements. The adrenal glands normally produce the equivalent of about 7-8mg a day - above that level there is no need for more and below that only the top-up is needed for normal functioning. Occasionally they would produce a large burst in response to stress of various sorts - that can be emotional, physical or infection/trauma. Then they don't always respond as they should because the feedback system is dulled, it takes a bit of time to settle down and work properly again so one-off needs pose a problem. I always notice when I'm faced with something stressful, not much of an effect but it is there. That is why you should carry a card saying you are on long term corticosteroids and the dose, and also for a year or so after stopping pred altogether - it takes that long for normal service to be resumed - and some healthcare professionals like to give a booster dose during surgery or if you are ill to avoid an adrenal crisis if the stress is very great. More often these days though they just monitor you more carefully.

    The doing more one day being followed by a less good day is also "normal". The underlying autoimmune disease has left your muscles intolerant of acute exercise - and unable to "train" as you usually did. If you increase the amount you do VERY gradually then you can often improve your fitness quite a bit - but the emphasis has to be on VERY GRADUAL. Training involves a bit of damage to the muscle fibres which heals and makes them able to do a bit more next time. This healing process is impaired in PMR - so you have to aim to do less damage and take longer for the healing process. That's why we say to do things in smaller bites, allowing rest periods. I skied just a couple of very short runs at the start of the season and never every day - I built up slowly and by the middle of the season could do a dozen of the short runs with the rest on the lifts between - but still couldn't manage even one long run without feeling it. By the end of the season I could ski almost normally and a couple of days in a row. Then of course I had to start all over again the following winter...

    On a smaller scale, the same applies to daily tasks - you will manage far more doing (say) 5 or 10 minute bursts with 5 mins doing something else in between - doesn't have to be sitting and doing nothing, just use a different set of muscles with a different action. And certain things are worse than others - repeated or sustained actions are more of a problem and need more "training" because that is how the waste products build up in the muscles and don't get flushed out the same. Carrying something a bit too heavy may be a problem - shopping bags or a crate of beer for example my give you sore biceps (the shoulder area and bicepas/triceps seem to be particularly involved). I loaded everything in the boot of the car one thing at a time from the supermarket trolley and took it in the house a bit at a time as well. If I tried to do just 2 trips from the car instead of 10 - the result was sore arms!

    Opening bottles or doing anything that involved holding something firmly such as a trowel or even the iron resulted in very sore hands - what had you been doing the day before?

  • Hi PMRpro,

    As with Nick, sorry I haven't got back to you sooner.

    I value your advice, and am sincerely grateful for the time you take in replying, as I am to all the other kind people here.

    You won't believe this, but I spent ages writing out a reply to your message yesterday morning, then did exactly the same thing I recently did in a reply to Mark,

    I momentarily walked away from the i/pad and my darling wife picked it up to do something on the e/mails, and my whole message disappeared. Anyway, here I am, back with a fresh attempt at a reply.

    The answer to your question at the end of your message is that, I had probably been moving pots about in the garden. This is one of my wife's hobbies, me moving her pots around for her! Bless her cotton socks.

    But seriously, that day, I felt that just below the surface of what was the steroid, something was going on in my body that was telling me to rest, or else! And I did listen!

    You have, as a result of all your research and experience, what I consider expert knowledge on this subject, where as, I am just beginning to scratch at the surface. There is so much to learn. It can be easy to end up confused and bewildered.

    You will have seen from my previous posts where I am with my exercise routine.

    On everything else, like household chores, vacuuming the house, cutting the lawns, endlessly moving garden pots, (sometimes with the help of a sack barrow now) cleaning windows, carrying the shopping in from the car, for all this stuff nothing has changed. And unless there is an absolutely catastrophic deterioration in my condition, I don't want it to.

    I suppose this is all part of the male psychology of this condition that all us guys have to grapple with.

    All I know is I'm going to really fight hard to not allow this thing to diminish me from the person I have always been. Please don't misunderstand me I'm not being macho or egotistical. That is not the person I am at all.

    I'd be interested the gents comments here as well.

    The thing is, I'm only a short time into my PMR journey.

    To be honest, I really don't know where I am, or what is happening to me.

    Metaphorically speaking, and without wanting to sound melodramatic, I feel as though I have fallen off cliff, and don't know when , where or how I'm going to hit the ground.

    Occasionally I'm bouncing off the rock face, dealing with the thoughts real or imagined of the effects of the steroid meds are going to be.

    I hate the idea that the medication `I NEED is altering the function of my hypothalamus, pituitary and adrenal glands. I want to get get down and off as quick as I can! but responsibly

    ( just a little yelp as I hit the rock face there)

    I mentioned before about the question of what I have referred to as the Severity spectrum. Does the severity increase along the PMR journey? I wonder where I am on it.

    Or if the inflammation is quickly brought under control,is the progress of the disease slowed down, or halted to some degree.

    Is it the breakdown in my autoimmune system, that is ultimately causing the malfunction of all my biological systems and functions.

    Up to now, my experience hasn't been as difficult or unpleasant as some of the more unfortunate people here.

    Then again that may change as things progress. I may be about to hit a really rocky ledge on my way down. I hope not though.

    It does seem that everybody's experience is unique to them.

    Also, from what I am reading, that there seems to be huge differences in how it affects male and females. Comment Please?

    Any way I've been banging on for long enough.

    Always good to shoot the breeze with any of you nice people should you feel inclined.

    And I really do wish you all the very best where ever you all are on this journey.

    Hope your all having a good bank holiday.

    Ron.

  • Yes - it is recognised that men and women tend to experience both the PMR and pred differently. Obviously that is a sweeping statement but in general it applies. It is usually shorter - but there are exceptions. You are often able to do more which is probably associated with the larger muscle mass.

    Does speedy and aggressive treatment with pred change the subsequent course of the disease? Probably not - the illness is an underlying autoimmune disorder that causes the symptoms. The pred only manages the inflammation which reduces the pain and stiffness and probably doesn't have a fundamental effect on the actual disease - although there is some thought that neutrophils are involved somehow and pred acts on neutrophils (one type of white blood cells) so there may possibly be a link but it isn't proven in any way. That's why some of the PMR symptoms such as fatigue don't change.

    I wonder why men feel what they are able to "do" defines them as a person? I'm in no way diminished by not being able to do the things that aggravate the PMR pain - I do different things instead or do things differently. I've always aimed to be independent but never feel forced to do household tasks I dislike (not a difficult decision for me, I'd rather do all sorts of things including doing my translation work). See - if it were me (as your wife) I would have got plant pot stands with rollers rather than expect my husband to move the pots for me - but that is because he probably wouldn't do it for me anyway without a great deal of grumping and that is the norm here: bigger pots are put on stands so you can roll them out of the way easily. I'd do that with anything I couldn't lift myself. I designed my kitchen to accommodate what I couldn't manage easily - no cupboards, all drawers in the lower units so I didn't have to abandon hope of getting at the pot that was at the back of the bottom shelf! The garden was also designed with me and my physical limitations in mind. But over 20 years ago I was faced with being left alone and having to do everything myself - it didn't happen then but it could still happen so that thought remains with me.

    "I want to get get down and off as quick as I can! but responsibly" - so do we all. None of us wants to be on pred at all and certainly not more than we need. But it is doing nothing for your disease - it is merely managing your symptoms. As long as the disease is active, you have a choice: enough pred to keep you comfortable or stop and accept the pain you had BP (before pred). Eventually the disease activity will burn out - if you are lucky - and then you won't need pred. It may be under 2 years, or it may be about 5 years - or, as in my case, 12 years and still going. No-one can predict in advance what will be your personal course. Some experts say about a quarter are off pred in under 2 years but remain at a higher risk of relapse subsequently, half take some 4-6 years, the rest longer, some even need pred for life. You are never reducing relentlessly to zero: you are looking for the lowest dose that provides the same standard of relief you achieved with the starting dose. Rush it and you will develop either a flare or steroid withdrawal pain which is so similar to a flare you can't tell and the usual response is to raise the dose again in either case. Go slowly and in small steps and while it may seem slow it is faster than getting into a yoyo pattern with your pred dose and never really getting anywhere. And it hurts less usually.

    "Is it the breakdown in my autoimmune system, that is ultimately causing the malfunction of all my biological systems and functions." - who knows but probably not. If all your systems and functions were broken down you'd be far more ill than you are. The autoimmune disorder is probably attacking a lot of cells/tissues but there is no real way of knowing which. PET/CT or MRI might have shown up what is inflamed and then you'd know some of the extent - but the damage the autoimmune bit is doing is sometimes invisible. I have atrial fibrillation, probably due to damage done by the autoimmune process to the electrical system that governs heart rate. The only sign I have of that is episodes of a/f - but it is well managed with (more) medication. Autoimmune disease can attack any part of the body - what the label you are given is depends on which and what the effect is. You can have autoimmune liver, kidney, thyroid disease - and a load of other varieties.

    "Does the severity increase along the PMR journey?" - not sure what you mean by that. It isn't a progressive disease in the way multiple sclerosis or RA is because there the tissues that are damaged (nerves or joints) don't repair and that means the disease progresses in the effect it has on your body. The autoimmune part of PMR probably cycles - waxes and wanes in activity over time. When it is less active you may be able to reduce your dose of pred - but then need more if it flares up again so the current dose isn't enough. But it isn't destroying any of the tissues it attacks as far as we can tell. Eventually it goes into remission for a good 3/4 of us, maybe more. And about the only leftover may be muscles and tendons that aren't quite as they were before PMR or BP - and how much that is to do with PMR/pred can't be specified, you are x years older. If you have to have an autoimmune disorder, or a vasculitis of any sort then PMR and GCA are certainly amongst the preferable ones. If you don't believe me go to a vasculitis or lupus support forum and read the stories there - it will make you feel really pretty good about PMR!

    Hum - I'm sure I've not answered points - ask again if there is anything burning and you want to hear my opinion! I fully understand if you don't by the way.

    But I'll just add: the most likely reason for hitting a rocky ledge on the way down is trying to be macho and stop the pred when your body isn't ready. You can't "beat" PMR - and it pays to learn to accommodate it. If you try to ignore it it has a habit of turning round and biting back at the most inopportune moments! Work on the "will you scratch my back if I scratch yours?" approach and in general you will find that much of life will go on in the same sort of way it did pre-PMR and BP. It might take a bit longer to get to the same end - because you built in some pauses to the process - but you will get there. And that applies to gardening, lawn mowing and pred reduction. If you don't learn anything else with PMR. you should learn patience!

  • I know exactly what you mean about coming to terms with the pred, and with the limitations of the disease. I've used the figure of speech describing PMR and Pred as a two-headed dragon. It's life-changing, learning how to keep these two monsters in check and headed in the direction we need to go. But looking back over the past two years, the first undiagnosed and gradually getting sicker, and the second with prednisone, I know which one I'd choose to live over again, side effects and all! 🐉

  • Thanks very much for all this.

    "I wonder why men feel what they are able to "do" defines them as a person?"

    I guess, ( and I'm treading very carefully here) it must be something to do with Men coming from Mars and Women coming from Venus.

    Or put another way, men and women are, in many ways psychologically and emotionally different.

    I guess that we all learn, over the years to live with each others little idiosyncrasies.

    However, while I can move the pots, and carry out all the household chores the way I have done for the past 50 years, that's how I want to continue. Also my wife would never expect, or ask me to do anything I wasn't entirely able or comfortable to doing. Like I said earlier, if there is a catastrophic deterioration in my condition WE! will have to

    I hope you don't think that anything I have said makes me come across as being in anyway macho. I just want to be on the lowest possible dose, for the shortest possible time and all under the doctors supervision.

    I did say that I wouldn't approach this irresponsibly.

    Anyway thanks for all your advice.

    Take care.

    Ron.

  • Thanks very much for all this.

    Sorry I missed a bit off the end off a sentence.

    At , Like I said earlier, if there is a catastrophic deterioration in my condition WE! will have to think again. And do things differently.

    "I wonder why men feel what they are able to "do" defines them as a person?"

    I guess, ( and I'm treading very carefully here) it must be something to do with Men coming from Mars and Women coming from Venus.

    Or put another way, men and women are, in many ways psychologically and emotionally different.

    I guess that we all learn, over the years to live with each others little idiosyncrasies.

    However, while I can move the pots, and carry out all the household chores the way I have done for the past 50 years, that's how I want to continue. Also my wife would never expect, or ask me to do anything I wasn't entirely able or comfortable to doing.

    Like I said earlier, if there is a catastrophic deterioration in my condition WE! will have to think again. And do things differently.

    I hope you don't think that anything I have said makes me come across as being in anyway macho. I just want to be on the lowest possible dose, for the shortest possible time and all under the doctors supervision.

    I did say that I wouldn't approach this irresponsibly.

    Anyway thanks for all your advice.

    Take care.

    Ron.

  • No - I didn't think that at all - I was just trying to express that however much you don't WANT to be on pred it may be inevitable for some time if you want to be in minimum pain and that if you want to get to a lower dose you may find some adjustments are needed and will help. I'm not saying don't do things - I'm saying see if there are alternative ways of doing them.

  • Understood. Thank you. Ron

  • Greetings Ron / all.

    Thanks for your kind responses and it's nice to be 'back'. Actually, I was only away in body, not mind (but some would argue the point!).

    Thanks also for some really interesting posts here about the cycle of Fatigue and, for some of us at least, an eventual, cautiously optimistic feeling of being re-energised after drops in preds at lower levels, i.e. < 10mgpd, however minimal. Clearly, this is where it gets exciting if it means that 'Ade and Des' (The Adrenal Department) are slowly getting back to work!

    This has been my experience of (what I assume is) the steroid withdrawal cycle over the last couple of weeks. Dropping gently to 6-ish mgpd on the Escalator (my accidental, rough equivalent of DSNS), enduring a catch-up spell of fatigue lasting several days (grr..), adjusting the steroid dosage a little (+/-10% max), rest, and hanging-on in there. My best guess is that this 'balancing' cycle can last a couple of weeks: and on reflection, it was the same at the 10mgpd threshold 4 months ago.

    Result: 'suddenly' feeling significantly brighter / more energetic mentally and physically, and less wracked with pain despite a couple of days' demanding work in between. Bingo? We'll see... If nothing else, PMR teaches you to be patient and not to jump to conclusions either way.

    On a serious note: I'm certain that the 'dream' for many of us is to be free both from the nasty symptoms of PMR and / or GCA: and also those of the potentially equally nasty treatment for these truly horrible illnesses and all that they bring to (or perhaps take away..) from our lives. A dream that, unfortunately for some, might not come true for all sorts of reasons. As I write this, I can only imagine the cocktail of emotions experienced by GCA sufferers, especially, for whom the precious gift of sight has been affected (through faulty or late diagnosis?), let alone the practical implications of this for them and their nearest and dearest. Life can be cruel.

    Maybe this is where, through adversity and the process of coping with uninvited Change of whatever kind, we explore or find our reserves of faith and courage regardless of our religion or spirituality? Food for thought. If nothing else, PMR has taught me not to assume anything about my health or capabilities: just to appreciate Today and look forward to a better Tomorrow - that's good enough for now.

    Ok, enough of the philosophising! The wine's open now, I have that 'Saturday' feeling and dinner's in the oven. A steely-eyed, John Wayne-style, sardonic grin is spreading across my face as my creative mind once again gets busy with how to see the Lighter Side of Life with PMR more than to drown in my frustration with, and anxieties about this quixotic and under-publicised but life-changing illness.

    In my books at least, Laughter can be as effective as anything else in terms of coping with such challenges: and, if shared with others, all the better. You are all part of the process for me and, I hope, I am for you too: if only in a small way.

    Best wishes for a happy weekend, wherever and however you are right now.

    MB :-)

  • Hi Mark,

    Would agree 100% that laughter gets you through life.

    My family has always had a sense of the ridiculous, and as I explained to my son-in-law and daughter-in-law many years ago, it's no good trying to change us, just go with the flow. And they have, to their credit, although when we all get together there are some strange looks between them, when the "original" family get going. Glad to say that the grandchildren are following suit!

    I always remember what my son's best friend said when my husband died - "when I think of your Dad, he makes me smile". Not a bad epitaph, and I must admit everyone enjoyed his funeral immensely! As many laughs as tears.

    Must admit my sense of humour has been stretched quite thin over the last 4 years, but it has never left me, and I sincerely hope it never will!

    Got son & family around this weekend, so more laughter abounds 🍾

  • Hi DL, nice to hear from you!

    It's late in the day and I'm 2 (ish..) glasses of wine down the road (hic..!) towards a hard-earned night's sleep.

    All I want to say is Thank You for sharing laughs as well as tears, in between the scientific and often unfathomable, scientific and heady stuff of the PMR / treatment equation. For me, like you, this is how some of us best cope with Life, with all of its twists and turns.

    I'm always open for business here, and contact with you (and others) who share a certain philosophy. You all probably mean more to me, than me to you.

    As a life-long student of comedy, one of my comedy heroes (amongst many) is Spike Milligan (rip). I love the story about his wishes for the wording on his epitaph. It goes: 'I told you I was ill...'

    Mark :-)

  • Hi mark. You are a breath of fresh air. Thank you for making us all laugh while still being sensitive and caring to us all in between the lines. Just what the doctor ordered. Thank you. Ex💐

  • Thank you so much Emilytom, nice to know that my mischievous SOH makes a few people giggle!

  • Too true and thank you for doing so. It can't be easy to keep up such a funny sense of humour. Right up my street. Ex💐

  • On the NE forum we set up separate sections for photos, a chatterbox, family and so on so that contributors didn't have to feel they were detracting from the serious business of PMR/GCA when they wanted to share such things.

    I was actually told off on another forum for a flippant comment that I was told was not part of "the code of behaviour on forums". I think most of us were a bit taken aback!

    As I said on another post though - wish we had proper emoticons! I suppose those of you with fancy phones have them??????

    :-) ;-)

  • Interesting, PMRpro. I worried at first that my mischievous humour and posts would be out of order, but it seems that most people enjoy them and they at least contribute at that level.

    As many here say, laughter is one of the best therapies :-)

  • Absolutely - the person concerned probably had vascular dementia and certainly had a bee in their bonnet about something. They denounced all official sites as lacking and inaccurate about GCA - but not consistently! They deserved a lot of sympathy but was a hard person to love.

    Most of us are only too grateful to have a laugh with people who understand the weirdness of PMR/GCA and pred...

  • Well said PMRpro.

    In my eyes, some gentle, shared humour on forums like these doesn't detract from dialogue about the more serious issues. If anything, it can only help dialogue to flow.

    Of course, humour is a very personal thing and I can only guess that some people on these forums are too ill, depressed and / or angry about their illness (the world?) to see the lighter side and share a few smiles. In a way, I feel sorry for them, in that they can't join-in with the stuff of humanity that keeps so many of us going through the tough bits - compassion and humour.

    Off to the seaside now, have a good weekend all :-)

  • Got a keep up with technology! My son has to have the latest whizz bang thingamajig on the market, drives my daughter-in-law up the wall.

    Don't know where he gets it from - his father was a right Luddite. 📱🐶🐸🐹🍾💜🦄🇬🇧🌞🔚

  • I'm so pleased I get to see your lovely emoticons in my email notification - Healthunlocked is a bit pathetic at reproducing them though...

    I have a Luddite husband too. My brother was here last week and he and OH (both Davids, is this relevant I wonder) were attempting to book bus tickets from Innsbruck to Munich airport online. What a performance between the two of them - his wife and daughter and I were wetting ourselves at them! I decided about 10 years ago that most men over 55 shouldn't be let near mobile phones ...

  • Yes quite agree. Whilst I was still at work I insisted mine had one so that if he went out and there was a problem he could either ring me or for ambulance if necessary, and I could contact him. He did take it, but only switched it on if HE needed to ring out! Grrrrr!

    Wouldn't mind, but when he was in the Army he worked on guided missiles et al! Mind you, he was always happier with a shotgun! Men!

    🙈🐒

  • Yes - mine treats his mobile like that - no use at all if you need to contact him! Not that he could hear it when it rang but he does wear his hearing aids now so that should be an improvement...

  • Spike ! What a legend Bless Ex💐 Always look on the bright side of life 🎶🎶🎶🎶🎶🎶 ahm ahm ahm ahhhhmmmm. 🎶🎶 always look .......... X

  • Good morning DL. Yes sense of humour ! My family are in the same vane. Careing sensitive and fun and not too overpowering (I hope) when we all get together which I'm happy to say is most weekends. My beautiful grandchildren ages range from 18 years to 4 months (8 grandchildren in all) so my life revolves around A levels and learning to crawl. Phew !!!! Yup laughter and hugs. The best medicine. Ex💐

  • Hi,

    I have 4 grandchildren - vary from 20 - at Uni in Wellington ,NZ (unfortunately) to 9 on 1 June, but we're having a party today! Whoopee!

  • Enjoy EX💐

  • Greetings all

    I'm going to be away for a couple of days (I can hear the sighs of relief already) . The seaside beckons, I've got my bucket and spade at the ready, some pocket money, and a fiendish grin on my face.

    The Plan is to build a 200 metre high replica of the Eiffel Tower in sand on Bournemouth beach. Then, to charge holidaymakers to climb to the top (if they dare). That should keep me busy AND bring in a few extra bob. Result!

    Have a relaxing bank holiday (UK) all. Back soon... whether you like it or not ;-)

    Marko Polo

  • A flag to stick in the top. Oh ! and don't forget sweeties ! Enjoy E x💐

  • Hope you've got your passport - we're a bit fussy about who we let into sunny Dorset Can't be too careful nowadays you know.

  • Ha, DL! If Dorset's good enough for HRH, it's ok with me too. If it helps, I am an OBE (One Boiled Egg).

  • Love it - made me giggle!

  • Thank you so much shella.

    A similar 'tongue-firmly-in-cheek' de-brief is on the way very soon... ;-). It's so nice to be able to share a laugh or two, in between the more serious stuff of dealing with PMR.

    Keep well and smiling in the meantime

    MB :-)

  • Outstanding and thoroughly entertaining. Have you ever considered writing for children - meaning, perhaps about JRA and how that works? they deal with so many meds and issues - it would be wonderful to have that kind of a book for them...

    Id love to hear more !!!

  • Thanks so much Zacsmimi. Can you explain JRA?.. or have I missed the boat due to PMR brain fog?! Children are the Future :-)

  • Juvenile Rheumatoid Arthritis. I am aware only because a friends 8 yr old has been diagnosed, and is on three times the drugs I am... at least. :(

  • Ah, thanks Zacsmimi.

    Sorry for the delayed reply, I'd love to write for kids, it brings out the kid in me. But there are some (big) kids on this forum too! :-)

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