After feeling quite smug at getting down to 4 and starting to reduce to three along comes a load of personal stress and that started a flare. So back to 7 . So frustrating.
Just having a rant here helps!
Damn damn and double damn : After feeling quite... - PMRGCAuk
Damn damn and double damn
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Suetum
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58 Replies
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Frustrating and so annoying that there are so many things we have no control over that have control over us.
Wishing you well.
May I join in your rant... feeling exactly the same, going well at 9mg then people/events conspired, now back up to 11/12mg. Two years ago I was at 7mg. I am so sick and tired of this, and the other A/i issues that have arisen.
Good, feel better for that and I hope you do, too 
in reply to Slowdown
I'll join in the chorus too! It's never dull here! Downstairs toilet piping joint now blown! Guess what! Our plumber is away till the 17th. I feel a Monty Python song coming on! "Always look on the........." Never mind I'm in good company on here!
Slowdown in reply to
Hope you're recovering from those Hospital Adventures ..oh dear, it's the downstairs toilet that's the problem, that means up and down the dreaded stairs! here's a little laugh re. plumbers youtube.com/watch?v=_FM9Ps6...
in reply to Slowdown
Ha! Think we'll wait for our chappie!
HeronNS in reply to
youtube.com/watch?v=d-diB65...
That's what the French nurses sang when they let a lift door close on my oh's newly replaced knee. he was not a happy bunny and definitely rather worried........luckily no damage was done but he very much lost confidence in French nurses with wheelchairs!
Oh what a nasty experience. I don't think having a song sung at me would have made me feel any better.
York54 in reply to
We just had our downstairs cloakroom loo repaired. We were recommended a guy who calls himself "bogs and taps"!! Strange I know, but he was great. Repaired loo in an hour. Quirky guy, but got the job done. I know you live on same side of Brum to me , so thought I'd suggest him if you're desperate!!
in reply to York54
Thanks for that York. We are ok using just the upstairs toilet at the moment & I've isolated the leak. We know our lad from a long time back & he's good. Have looked up "bogs & taps". So any problems & we will go to him. Can't beat recommendations can you.
May I sing (cry) along? I was at 6.5 mg and then, well, not sure what happened. Tried to inch up, but that didn't work so now am at 12.5 mg and trying to stabilize so I can start the slow trek downward.
Hang in there, everybody
Kate in Arizona
Welcome to the rollercoaster choir, Kate - good luck with the ups and downs. We'll get there!
Bummer... we have all been there and have at least ONE teeshirt! I'm down to 35mg from 80... so 7 sounds AMAZING! Grass is always greener, right? Good luck.
Same experience this week. Stress caused me to increase and get off the taper train! Oh well, rant not my friend...as we accept the ups and downs of this illness we will just realize it’s unpredictable nature.
My wrists hurt and hands don’t work when I don’t have enough Pred. Just dropped a glass of juice all over the floor. Dropsies drive me crazy! Tai Chi helps temporarily.
At least it wasn't a glass of wine!
DorsetLadyPMRGCAuk volunteer
🌷
It reminds me of a duck race. Whizzing along and suddenly wham! Caught in the weeds. May it pass quickly. If you caught it early you might be able to get right back down in a few days. Unless the stress is unrelenting.
Think I've just got caught in your weed.
Felt OKish first thing , son going to Tesco for a few things, thought I'd go too.
Only there 20 mins.1 hour later - heavy legs can barely walk normally. Then aching thighs and overpowering need to sleep.
I've woken up, feel like shit. ( sorry can't think of a better word )
Doesn't feel like a flare, more like losing the fight.
As you say caught in the weed ( and slowly drowning. ) Have taken extra 0.5mg. Here's hoping. ( 12.5 mg can't get below 12.0 ) PMR about 3 years now.
I want to join the choir!!! Have been absolutely worthless the last couple weeks. Sleeping wherever I land and can't wake up! I hate this disease!!! That's it, the end of my rant song.
Was told by rhemuy 2 months ago, “you have no more polymyalgia. It is over.”
But doc, I still feel bad all over with no spunk! Will I ever be again what I was before my poly? “No.” (Said the doctor).
Constant pain instore
For future
What a miserable pessimistic plonker! He can't tell your PMR is over and gone - only if you get off pred altogether and have no symptoms. And once you get off pred you will need about a year to get back to pretty much normal - but you also have to remember you are x years older...
Hi saww, what a total idiot, has he any knowledge to base that comment on I wonder. My sister’s Godmother had PMR in her sixties. It took eight years for her to get over it. She is now in her nineties and is incredibly fit and healthy, living in her own house. I did not even know she had had PMR until recently when I got it.
Well that is lovely to hear. Must admit I've wondered what I'll be like 'after' PMR. I choose to remember what you've just said. Positive thinking 👍😊
I was told that (“PMR over”) 3 years ago, but was still in considerable pain. So I posted on here for the first time and asked “what comes after pmr”? Loads of replies (mostly about stress and diet, which rather suprised me), but PMRpro answered “if it walks like a duck and quacks like a duck it probably IS a duck”, which made me laugh. I’ve loved this forum ever since.
Now in 6th year (down to 4mg) still in pain but our “togetherness” on this forum is magic - more helpful than any rheumatologist I have ever come accross (and I’ve seen a few).
I think what we need is a private PMR island we can all escape to....wonder what things we would do on it.....nothing sounds nice, but would allow a chef and waiter methinks!.....yes, we can all dream...…..
Must have books and recliners.😀
A warm pool........easy to get into!👍
Snap ! I had a very similar experience . I was on 3 for 3 months then had my bloods done and wasn’t walking so well then found the inflammation had shot up. I’m currently doing pretty well on 4 . Cross fingers Suetum! Good luck !
I'm just struggling with the 7mg barrier using the DSNS method, but the heat is stressing me out. don't know if I can continue unless it gets cooler!
Same for me. I was down to 2 now up to 7... you just gotta go with the flow I'm learning
I have been months on 5mg, feeling fine. We have friends from Oz staying with us , so for a week we have been preparing for their visit, house cleaning etc. Now, it's entertaining them, cooking , visiting etc. I feel shattered , yesterday I took 7mg as my legs are beginning to ache and I'm feeling soooo tired!! Just shows how any added stress soon lets the body know!!
Having a rest day today thank goodness .😉😉😉😉😉😉
in reply to York54
Hi York
If we carry on living our ‘Normal’ Life (which isn’t that great a lot of the time) we cope but as soon as we add in extra we really feel it; we move into our new home next week (from our Rental House) so we can do it gradually & I’m leaving things in Storage.
We have visitors from the States at the end of the month but it’s only B&B we are going out for lunch and dinner, then going away for two days one night.
Enjoy your Rest Day 🌺
Mrs N 💅🏼
York54 in reply to
Thanks 👍👍👍👍👍
Visitors come to see you not the house. I know we all look critically at other homes, but they won't end a friendship! Ask them to help and give them a PMR pro description of the disease.
in reply to Valnvaughan
😂 I’ve already told Andy how to use our coffee machine (they don’t do Tea, these Americans 😉) He can look after himself as he’s an early riser!
At least - if it ends a friendship you really have to ask if it is any loss...
I have a friend who's husband does all the housework, I asked her how do you get away with it.....answer......He knows I'm no good at it!!😏
Same here,nearly,I got down to 5.5mgs fairly smoothly.Then had to attend another session with the divorce mediator ,coupled with having to delay taking my morning Pred. once last week.Suddenly was in the grip of a horrible flare.I went up to 6 then 7 -and today 8 but will try to drop back to 7 tomorrow.
On the plus side I started a painting on a 3 foot canvas yesterday and worked on it for 9 hours today until I finished it. I've never painted something like this before. I think the higher dose kept me going. I didn't even have an afternoon dip into severe tiredness.It made me realise how my body must have actually been struggling at the lower dose.
It's disappointing isn't it? Anyway good luck with your journey.best wishes to you.
This is a great forum for cheering you up. We all chip in our two cents worth and we feel so much better. Thanks to all of you.
It is isn't it. Lots of good advice but lots of interesting chats and laughs. Don't feel so alone with PMR.
Huge benefit
I feel your pain and frustration! I was on Preds for 6 years, came off May last year as I was told by rheumys that I couldn't possibly have PMR because I was too young, even though I believed I did (if it looks like a duck and quacks like a duck ....). I had lots of problems getting off Preds and getting adrenal glands going again, even though went very slowly, had to see an endocrinologist and switch to hydrocortisone til cortisol levels went up again. I've been in pain and unwell ever since, now after a PET scan I've finally been told I do have PMR after all (which explains why). Now trying to work out best way forward: stay off Preds, but that leaves me unable to function because I'm so inflamed, to take a small dose of Pred (2.5) which doesn't seem to do much but wouldn't affect the adrenals, or go back up to 5 which seems to work but then it'll probably be hard to get off them again at some stage, maybe next year. Really don't want to be back on Pred, but have to balance out ability to function vs side effects (weight gain and sleep problems). GP says to ask rheumy, but appointment that should have been in May won't be til late September. Rheumys are clueless anyway when it comes to advising what's best, they don't know how it is in real life. I'd say trust your instincts and the wisdom of the experts on here. Re the stress I'm following all the advice in Dr Rangun Chatterjee's book 'The 4 pillars of health', eating the low blood-sugar diet way (cutting the beige carbs: sugar, pasta, flour, rice, potatoes), doing mindfulness, making sure I have at least two 15 minute me-time relaxation breaks a day, keeping sociable and moderate exercise. I'm sure it all helps.
It isn't as simple as pred bad, no pred good at whatever level. Untreated PMR is more likely to progress to GCA - then it is high dose pred or risk losing your sight. The unmanaged inflammation is also probably doing damage to your arteries and, long term, even low grade inflammation increases the risk of developing certain cancers. Longer term low doses of pred may prevent you ever needing the high doses - worth considering.
What makes you think your PMR will be done and dusted next year? If you have already had it 6 years you MAY be like me - I have had PMR for over 14 years now. The median duration may be 5.9 years - but that isn't a cut-off date, any more than the 2 years so beloved of doctors.
I have lived the way you describe most of my PMR journey although it was a while before I ditched carbs drastically - I didn't eat sugar and flour products much anyway ever. I have always lived mindfully (to use the modern term) though I didn't and don't think of it as such. I live well with PMR - with pred - but i'm sure my attitude helps too. I'm on what is called a physiological dose (8mg) and feel pretty good. So my adrenal glands may not wish to wake up? At least I won't have to beg to be left on pred at a high enough dose to manage my symptoms. And another factor on the pred dose is that it helps me manage my atrial fibrillation better - one of the heart team thought that was wonderful!
Thank you PMRpro, very wise advice. I'm thinking the best way forward might be 2.5 pred daily and increasing it if necessary to 5 or more for short bursts like flare-ups or when I need to be more mobile eg holidays. GP thinks that should be OK but that I need to ask the rheumy. I was hoping it'd all be gone by 7 years but of course you're absolutely right, who knows how long it'll last? I do wonder if because I'm so young (57 now, 51 when started) whether I've got it worse than average, is there any research of age correlation? Is PMR generally worse if you're younger/older?
I'd say it might be! We younger ones are generally atypical - low or normal ESR/CRP and I suspect a longer duration. I was 51 when mine started and it crept up slowly, not an overnight onset. Taking everything together it looks likely I also had large vessel vasculitis too although I responded miraculously to 15mg pred.
I believe there are a large number of people like us. Who are ignored because we were young and atypical when we went to the doctor. Told we had fibromyalgia, it was "our age", depression, whatever.
But research about it? Don't think so.
I was lucky, although two GPs missed it, a third one spotted it pretty quickly when I mentioned the strange thing was the neck and hip pain and stiffness was unbearable when I first woke up, but wore off a bit during the day. He said 'ah, I think you've got PMR' because his father had had it and the same thing. I remember he also said 'If I'm right, take these steroids and you'll feel fantastic in a day or two and think I'm a God'. He was right and I left a message at the surgery to say 'Please tell Dr X he's a God, the steroids worked'. We've had a great working relationship ever since! It was the 'expert' rheumatologists who kept telling me I couldn't posssibly have PMR because I was too young. I was misdiagnosed fibromyalgia, psoriatic arthritis, spondyloarthropy, anxiety and stress, etc etc .... Thanks to help and advice on here I battled against them and eventually they've conceded I was right (though not that they were wrong).
Yes - the rheumy I eventually saw wanted it to be anything besides PMR though I don't think fibro was ever mentioned! I know 3 outstanding PMR expert rheumies - they are happy to accept it is worthy of their notice and do research. There are others - but the problem is to find them.
After a horrible encounter with Dr Colin Pease I managed to get transferred to the lovely Dr Mackie but even she said I was too young for it to be PMR
CP seems to be getting a reputation. I shall have to have a word with Sarah - someone needs to do some work on this. And they all need to be rather more openminded. If there are young cases of GCA - and there are, biopsy proven - then there can also be young cases of PMR as they are, to all intents and purposes, the same disease.
Also Preds seem to make my feet and ankles swell less, and the saliva glands/neck (which might possibly be Mikulicz disease but I still haven't got a diagnosis on that).
Having a rant makes you feel better. GCA is so frustrating! Don’t give up hope I’ve been OFF steroids for one month, but everytime I feel unwell I keep wondering if it is coming back.
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