I haven’t posted for a while . Have read and checked in though almost daily .
Have not been feeling to good of late , can’t seem to get my pain under control .
I have a lovely Doc that has seeing me/ or phoning me .
She tried to get me a rheumatologist appointment , they said they would not see me whilst on steroids as they didn’t think I have PMR ,
I know from reading your posts that this does happen not every one’s bloods show inflammation .
One set of bloods taken a few weeks ago showed some inflammation , I think that was due to my knee being very painfull and swollen this is a new thing with me .
I am in a quandary don’t know what to believe any more .
I have been reducing my steroids on docs orders started on 20 mg in August 22.
Did feel so much better could move better, kneel down , not struggle to get up once I had sat down . Turn over in bed without feeling I was stuck to the sheets .
Put a dress on over my head .
With me I had to keep moving during the day the feeling of my body seizing up always came on early evening .
Although have suffered almost daily with buttock pain of late , that’s bad .
Can’t get comfortable in bed each side aches.
I have had to retire from my work , can’t keep losing time it’s not fair on them .
I am now on 5 msg from 7.5 started last Thursday , I feel crap weird .
I know about the tapering plan , did say to my doctor that you should not do this quickly , she wants me to drop to 4 mg after 4 weeks .
On Friday evening I felt unwell got sick , don’t know why or where that came from , I hate being sick I’m a wuss .
So that’s me mixed up confused , should I ignore my docs instructions and take more steroids is that what’s wrong with me , I will get back to my Doctor to let her know how I am but just wanted your advice please
I apologise it’s a long post .
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Staffieblue
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Well if the hospital was going by blood tests taken while you were on pred - then it was unlikely to show PMR inflammation. And now if you are on too little pred - of course your symptoms will come back, even 1/2mg too low will eventually let the inflammation build up until it is enough for you to feel the effect.
You aren't telling me you have been told to reduce from 7.5 to 5 in one step are you? Is she looking to create work for the local ED and ambo service?
I'd say the buttock pain and pain at the sides of your hips are greater trochanteric pain syndrome - not uncommon alongside PMR. Your original response to pred does suggest PMR, whatever they think now.
You need a different GP who knows rather more about PMR if you can find one - and I realise having stopped work you won't be that flush but is a single visit to a rheumatologist privately an option if there is a good one within reach?
I'm feeling quite depressed - I really thought things were improving but after the last few weeks - maybe not.
She's out of her tiny mind - with seeking the return of adrenal function, the lower the slower. Even if you don't have PMR and stopping the pred on that ground is reasonable (I don't think it is reasonable at all) then you still need to go slowly for the adrenal question - as ANY endocrinologist would tell her. She could have you in hospital the way she is going. As if they didn't have anything to do ...
Thank you for your advice yes this is what I knew in my head .
I had to stop myself saying to Doc this is what Dorset lady says about tapering .🤣 did say it another way though , I’ve put a laughing emoji but it isn’t really funny is it it’s appalling .
Have spoken to surgery nice person on reception , no battling has emailed my doctor with how I’m feeling . Thank you again for your help and guidance 🌷🌷🌷
staffieblue I just love our ladies, they are sooo right in their advice and I would take their years of experience over my consultant any day.
My Dr said it was PMR, my consultant said not. The ladies beg to differ with consultant, it’s PMR, I’ve just done 6 months on the most intoxicating sh”*t you could ever take, had most of its side effects, when I could hardly see through my swollen eye sockets I decided enough was enough and stopped taking max. My eyes after 3 days have never been as open,my joints are no longer hurting but what I do have is aching ribs, shoulders, muscles, cannot propel myself to walk very far without my legs giving up but feel so much more in control.
I’m on 5mg of pref and I will only come down half an mg over the months because this is what works. God knows what they will try to put me on next, bring on 2nd May 🥴
the clown asked me to try again on the mtx said I was going to be in big trouble down the line if they didn’t get things under control now. She said I did ok on 6 but not on 10 so we slowly slowly move from 6,7,8 maybe 9 but not 10, her words . Pref is down to 4.5 aren’t I the perfect Guinea pig. Can you take water tablets on this stuff ?
poor you Staffie. That’s not great is it. Can only add my support as the replies above have covered it but I know what you feel about feeling ‘crap weird’. I find it’s a very odd feeling to describe. You can say the more obvious stuff like I can’t sleep on my side as it hurts ( I now sleep in the prone position btw as I think it spreads the weight between hips and is more comfortable for me), you can say I can’t get up without a struggle , I feel miserable etc but there is still this crap weird feeling that I can’t specify. It’s feeling funny ( unspecified ).
Yes you have got it exactly , thank you for your reply , this condition makes you feel very odd at times . I’m just in a bit of no man’s land my bloods have only twice showed inflammation .
Once years ago as I have said previously young doc kept asking me had I been in a car crash ?
Then a couple weeks ago bloods showed muscles were inflamed , I think that was my knee though swollen and very painful not had that before , the rest of my body aches bad really hurts .
Buttock pain that even hurts to sit on the loo seat
Why does that not show up ???
I just want the right diagnosis .
This illness has slowly taken my energy and abilities away . I’m angry about it .
I got to reduce my hours due to feeling unwell at work , they were very good about it didn’t want to lose me .
Got my State pension last year , for the first time I was well off not having to worry about money could treat myself .
Had to retire due to ill health this month .
Also it’s not right that when you are being sick my back literally stung me a stinging sharp sensation in my muscles it didn’t last long but this has happened before . Should of asked PMR pro about that 😊
I truly hope you are doing ok sorry bit of a rant Thankyou Seekingasolution great name hope we get a solution 🌷🌷
there are certainly some similarities between us. I had to give up work at 55 as I couldn’t get up from a desk or table , or the train and needed a sleep at lunchtime to function ! Like you my inflammation markers aren’t high. One doctor said ‘ I think you’ve got a cold ‘ !! Like you I’m am totally bemused as to why blood tests don’t reveal more. It’s been hugely frustrating. I’ve had guided jabs for greater troncheris whatever, been told I have a bursa as I couldn’t climb stairs without virtually pulling the banister off the wall but after 12 years it is starting to fade thank goodness - so there IS hope !
I’m on 1 1/2 mg now. I don’t know if the disease has just run its course or what as I’m less stressed these days and I’m following a mainly plant based diet. Just bought Prof Tim Spectors book and note he says for long term health a vegan diet or a Mediterranean diet ( which isn’t much meat ) is best. This is no hardship for me whatsoever ( as it would be for some ) and although I’m not clear of this disease I am a whole lot better.
I don’t know what that sharp pain is you mention. Maybe someone else will have an idea. I look forward to hearing more of your journey.
The reason the markers don't go up is that some people simply do not mount the acute phase response when there is inflammation in the body which then causes the liver to produce proteins, especially CRP (c-reactive protein) which contributes to the ESR increasing in parallel. These two markers are easily measured and there are a load of other things that could be measured and they might be raised when your CRP and ESR isn't. But they aren't as easily available or as well studied.
Yes, PMRPro's depth and breadth of knowledge is amazing, as is her dedication, but as I sit here chortling what I love best is - 'make work for A+E', 'tiny mind', 'clown'. There aren't too many people who will talk about doctors like that. I'm one of them.
Yes, exactly, precisely. As of course you know, medicine has certain self-serving myths, such as no doctor or nurse can possibly be an idiot. I wrote a little poem once, a spoof of 'I am the very model of a modern Major-General': I am the very model of a medical practitioner... OK to post or does satirical verse ah deviate too far from the purpose of the forum?
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Dunno - depends how libellous it is!!! I worked in the NHS for years after having gone to uni first to Med School and then alongside medical students - doing physiology. Leopards don't change spots ... I have rarely regretted deciding medicine wasn't worth starving for for 6 years! Not even sure I'd go to uni and leave with a mortgage to pay off these days. Uni was great - but not that great!
I am a modern languages graduate of the University of London. . I saw academic medicine up close and personal and was not wholly impressed. Among other things I edited the manuscripts of the papers of junior doctors. Thinking of volunteering as a proof-reader for PMRGCUK, when I have a bit more energy.
Ho-ha-hum, WRT Dorset Lady's point about the Guidelines, the basic point of my worse verse is an upholding of the academic standards of, excuse me, chaps, my university, faced with those who were less than literate with imperfect rational processes, and appeared to think they embodied the university. Derogatory, i think one could say that, therefore no. A more repeatable quatrain is
I prove my academic cred by writing abstracts by the score
I once had one accepted! I deny that most are pretty poor
It's really very critical there's some research on my CV
It never once occurs to me I'm guilty of illiteracy
Arthritis and Rheumatism Council funded Research Unit Administrator to a certain Professor Carol Black. I think I can fairly say I've seen the top of the tree while crouched in my lowly corner. I wrote patient info, managed the research funding, cleaned the coffee area, basically anything that wasn't medicine. I think we who also toil, clinic-clerks, receptionists, accountants, IT staff, lab staff, cleaners, secretaries, porters and all are so often forgotten as medicine is almost invariably talked about as though it consists solely of doctors, nurses and managers. In fact of course without those wonderful unsung people at the bottom of the heap called clinic-clerks who book appointments and get notes for clinics, the whole thing grinds to a halt. No, it is not all on the computer! Complex cancer patients can have three enormous files of notes and these of course include multiple letters and results from their local hospitals. I believe there have been feeble attempts to scan...As secretaries at UCH we were expected to scan every single piece of incoming mail but that's now.
Did she remember her days as a ward orderly when she got to the top? Bless her - she was way better than me, I decided I wasn't willing to work that hard!
Ha, brilliant! it is not all of us willing to rise at 4 am, write a grant, swim 30 lengths and be ready for OPD at 9! I was there right at the medical start, by accident, when she was a single-handed consultant at the West Middlesex in Isleworth and I was living in Richmond and took a job as a temp to cover mat leave. Building up scleroderma was desperately terrifyingly hard at the start; when you have research fellows, they can write their own grants; when she was the only rheumatologist and had to see also every other rheumatological disease. Yes, I think she did, well sort of: Carol always said she would never ask anyone to do anything she wouldn't do herself, but of course what she would do herself was a little startling. In basic terms of rolling up her sleeves, sure, yes.
yes I have seen you mention them before , they are incredible people . 🌟🌟
I know from experience with my husband how and what a difference they can make to a persons life when they need them the most I do really value them .
That evening I was there they didn’t stop right through the nursing team the lady that made drinks was taking patients to the toilet as they had been waiting ages .
my GP wanted to send me in to A and E for bladder nerve tests today, but I refused to go, having spent 24 hours in a wheel chair 3 weeks ago before being moved to acute medical, I don't want to repeat the experience any time soon!
hi Seekingasolution! Didn’t know about Tim Spector’s book, so of course got it in the usual way and am ploughing through it. Definitely going to have a go at the Mediterranean Diet and see whether it helps. He definitely makes sense. Keep smiling!
I just read your bio :). I see you’ve done well so far in your journey back to health. I’m now on 1 1/2 mgs and have been for awhile. Let me know if Prof Spectors advice works in any way for you. I’m the lowest weight now I’ve been in about 8 years ! And still some to go ! Nudging into BMI 26 category!
hi Seekingasolution! Great to hear from you. I too am at the lowest weight in 8 years and also on BMI25. I will keep in touch with you and let you know how Sir Spector ‘s ideas work out. He sounds very sensible. Keep smiling.
I agree with your replies so far. The most important thing whatever is that you cannot taper off quickly, it has to be slow, slow, slow. That’s the only advice I can offer as your condition seems to be a bit more complicated than mine was. However I did beat it in the end so keep working towards that light at the end of the tunnel!
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