Hi not been on for a while first got advised by a dr in early 2023 i had pmr also i have fm i fought like mad not to take meds purely selfish reasons like i didnt want to admit i needed help . In november my bloods were so high my dr gave me a good telling off and i started the prednisone route to start with 40 mg to taper gradually which i did . Got my first hosp app for 30 th april . Tapered to 5 mg no problem . Then stupidly stopped taking them and i felt great no aches pains fatigue i totally bounced back then the headaches started on the friday before my hosp app i was walking my sons dog when.i lost partially vision in my right eye the pain in my head is like a vice pressure rang drs sent straight to a and e they queried migraine kept me in until.5pm no meds given instructed me to visit optician and attend rheumy app .i went on the 30th she was shocked i have never had proper med help in the 11 yrs ive had fm so the plan is they start my treatment plan from day 1 . Back on the 40 mg to taper as instructec . If my headache reacts to the prednisone positively they are looking at gca too . Im back next tues for more bloods then back week later for more bloods . Had chest xray to see if any thing is happening too. Sorry this is a long post lol xxx btw optician visit went well. No sign of a stroke as the hosp suspected it at first . But the optician did find two holes or moles either side of my eyes which i am not getting monitored for 3 monthly. She said not unduly worried as yet . It never ends does it xx im just wondering if any of you think i should of been given a brain scan ?
First rheumatologist vist: Hi not been on for a... - PMRGCAuk
First rheumatologist vist
Please don’t ever just stop taking Pred like you did - you could have done yourself a great deal of damage - in many different ways.
As for -
‘i lost partially vision in my right eye the pain in my head is like a vice pressure rang drs sent straight to a and e they queried migraine kept me in until.5pm no meds-
Typical signs of GCA and yes you should have been treated then and there… definitely a black mark against A&E I’m sorry to say.
Please keep us informed of how things go.
Thankyou will query this at next appointment
I assume the partial loss of vision was temporary? Nevertheless, amaurosis fugax should be treated as the warning it is as it may be a harbinger of an imminent stroke if nothing else. Did you not have a CT scan in A&E to rule out a stroke? Did they call an eye specialist? I'm really not impressed.
As DL says, don't EVER stop taking long term pred suddenly, however well you feel. You had been on enough for long enough for your adrenal production of cortisol to have shut down while on pred and it doesn't return overnight, it takes weeks or even months and had you had an emergency - as in fact you did - it could have made you very very ill.
There is a difference between a hole and a moles - what do you mean?
No no scan havnt had a scan since 2012 when dr was investigating fm my drs at that time did not actually believe in anything to do with fm(they are so much better now ) as i said im going to query scan on tues next when i go to the specialist i know exactly what im looking at regarding strokes because my mam had one not so long back so im not been silly with it im hyper aware if anything . Re my eyes optician said cud be holes or moles they happen usually as the ageing process .ive had both cataracts done on my eyes previous got scans on my eyes and these little "patches "have got tiny bit bigger so as i have said im on 3 month monitering and if they get bigger off to a eye specialist i go
They are on the iris of my eyes
Hope they behave!!
Thankyou so much x nice to be able to chat x not got very sympathetic work but my immediate family especially hubby been fantastic think im trying to reduce my stress at work bit by bit but also have to work out what i can do financially x
It is why we are here - most people feel very alone until they get here 
That’s very often a difficult choice to make -but you only have one life and the quality of it is very important. You adjust your lifestyle according.
Very few on their final passing say -I wish I’d worked more! 😊
I can manage my PMR on 5-6 mg, some people don't need very much pred. It sounds like you likely stopped taking it at 5 mg, just when you had reached the minimum dose needed to control your PMR.
I am astonished at A&E when you presented with those symptoms and a history of PMR. We all complain about Watford General being poor, my nearest A&E, but I was sent straight to the opthalmologist when I was having trouble with my eyes last year, and wasn't allowed to go home until they were sure that it wasn't GCA.
Hi, Watford is my nearest A&E too, you hear so much negative stuff about them but all my experience with them in the past has been good, so it’s reassuring to hear this re GCA in case I ever should need it 🙂
The ophthalmologist that I saw was a lovely lady. She was so kind. It wasn't long after being told that I have PMR and the various people that I had seen weren't making a lot of sense. They kept contradicting each other. She told me a lot more about PMR than the rheumatologist and answered all my questions. She also told me what to look for with GCA. I felt so much better about it all after I had seen her.
Im off for another round of bloods in an hours time x my hospital is james cook at middlesborough which is like a half hour drive each way bit of a schlep but hubbys driving . Still got niggles and pains but not as bad . now having issues with chest and between shoulder blade pain heart rate is now resting at 47 (according to my smart watch stats) on a night and it wakes me up from which little little bit of sleep i get last night it dropped to 41 carnt cope 🤪
Have you mentioned this to a doctor? I think I would stop wearing the watch at night - it is said they actually interfere with sleep more than they help. The bradycardia does need flagging up to someone. The ED at JC seems a reasonable option,
Im going in half hour so going to be having this discussed . I took my watch off night before last because honestly it was going off every ten mins but the niggle pain wakes me up with a start anyway you know like when you feel like your falling in your sleep its like that just wanted to record some data for the specialist i wear my watch because i jog or did jog hopefully i can pick it up again x
Well that was a visit without much joy had bloods done again mentioned to nurse about the heart thing and she got a very curt dr in basically he said at the min my pulse blood pressure etc is spot on i have to monitor it and if i get a crushing pain contact them !! I told him about the pain the sweating everything and he just said no further action atm so back on the 20th when nurse said im seeing the specislist again for firm diagnoses .. heart dr said im working through a illness with fatigue , its not a ordinary everyday illness and i should not attempt to push through the fatigue rest rest no sht sherlock lol
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