Am really fed up now 😤 this morning made a special early appointment to se doctor,as bean on what I think of as a lowest starting dose of prednisone 15 msg as I am waking up small hours with very bad neck and shoulders pain so I have to go down stairs and take dose with yogurt .so as I can get back to sleep 🤷🏽♂️ Doctor says give it time see you in a week.
Says that’s the correct dose carnt give you anymore 😱😫😵💫
What can a do 🤷🏽♂️
Rubbish, the starting do is 15mg-20mg, so if the 15mg does not give you around 70% pain relief then the dose is too low.
It is in the BSR Guidelines in the Diagnosis and Treatment of PMR and he should have read them.
I have a question, you have August 2019 down as the date you joined,
There is no other information, as to what you started on and other meds. Can you fill your profile in a little bit more please.
Sorry to hear this Ronzy. Have you experimented with your pillows. If I go to sleep with two pillows I get the pain you describe. One pillow is better although I’d rather have two. Can’t you have your yoghurt beside you, so that you can take your dose in bed? I always have my window open, so my room is cool. Also I would politely argue with my doctor, 15 mgs didn’t do it for me either, I needed 20 mgs.
Thanks for responding Jane yes taking some up tonight (yogurt.Tried augu, a little,but quickly realised, wasting mi time .when she said THATS THE CORRECT DOSE ,I CARNT GIVE YOU ANYMORE!😢😫
Sooo Al av t suffer 🤷🏽♂️
Rubbish - the 2015 Recommendations say the starting dose should be "the lowest effective dose in the range 12.5 to 25mg/day" and exceptionally, 30mg
rheumatology.org/Portals/0/...
It is No 3 in the Specific REcommendation appearing in Box 1.
There are lots of factors that relate to the dose someone needs - one size doesn't fit all and that is why you start with a higher dose than you will need and then taper it down to find the right dose for THIS particular patient. It is a process called titration and used with lots of drugs - just usually starting low and creeping up,
Tell him to read the link I've given you - and this is the title if it is easier to write it down and give it him
2015 Recommendations for the Management of Polymyalgia Rheumatica
A European League Against Rheumatism/American College of Rheumatology
Collaborative Initiative
by Christian Dejaco et al,
Thanks for that 🥰 I’ll keep it in my locker ,think I’ll have to go along with Her for a while 😢 she Dr seams a hard nut .😫I’m screwed again . Just One other point. I have been on here a long while.so I must have another account think my name was Rocketronzy. Any way it can be traced 😵💫
I started on 20mg as my body had seized up it took at least 3 weeks to stop the pain not 24 hours as some doctors think. 15 mg as others have stated is not max dose for PMR. In my 9+ years of having PMR and all its ups and downs, I have found most medical personnel have little knowledge of the illness, which is very frustrating.
Same. I needed 25 last year and this year 20 after starting again from fast to zero taper for a scan blooming annoying.
Hi Ronzy, I started on 15mg for a few days, then upped to 30mg for a week, then 25mg for a week then started a taper down from 20mg
Hi Bcol
In my innocence I stuck to the 15mg offered by the GP when I was diagnosed. It took over three weeks to make a major impact - and then soon after that GCA came along and I was up to 40mg. I really wish more GPs knew about or followed the 2015 recommendations as mentioned by PMRpro above. When I developed GCA symptoms, the doctor was talking about taking me off pred altogether as it seemed ineffective- there was never any mention of increasing the dose for PMR, which I am now pretty sure I needed.
Mm it’s annoying to put it mildly,but what can we do 🤷🏽♂️ Mi pain and stiffness is decreasing,yes they could be a lot more flexible,I was spitting feathers 😤
I am seriously thinking of buying some prednisone on internet, it’s not cheap ,but nothing to what dome people spend on cigarettes & booze .which is bad bad news for body and wallet 😤🧐
Hi Ronzy 😊
Believe me I do understand how you feel - but really I wouldn’t be buying prednisolone on the internet. It’s such a powerful drug (as we know) that needs both medical monitoring and pharmacy dispensing.
Can you have a further conversation with your GP? She did say she’d see you in a week…..that’s a minor miracle in itself. Do go armed with information from this site - PMRpro has given you a link to the 2015 rheumatology guidelines, and there’s lots more information in FAQs on here. Tell her that the 15mg simply isn’t enough.
If all else fails, ask to see a different GP. And if that doesn’t work, could you possibly get a private consultation with a rheumatologist? Hopefully they’d feed back to your GP.
Keep battling on, Ronzy, but don’t put your health at risk by buying powerful medication on the internet 🙏
All the best to you x
Tell your doctor that you belong to a support group and go armed with the treatment guidelines. Is there a special reason why she is keeping your dose low?
I started this PMR journey in 2017 on 15mg which worked for a fortnight, then pain came back and dose increased to 20mg. Now on 2mg (did make it to 1.5mg but pain came back again) increased back up to 2mg and intend remaining here for the time being. No problem with getting repeat prescriptions as, following pandemic, GP only does repeat prescriptions (no contact whatsoever with his patients). Every cloud and all that ......................
I am now not sure...about anything,,?
feeling really vulnerable and so fed up
Fed up with the PMR pain!
Flare again. Think I have not gone up enough. Stupid really. Should I up again now?
