Probably best to have a look at the HU PMR/GCA forum again- see you have been there before. You might get away with just adding 5mg of Prednisolone daily for a flare and dropping back down? Shouldn’t be a problem to reduce down quickly though after a few days. Check out their FAQ .Hope you get sorted -all good wishes.
you need to speak to your doctors, pester them to get an answer, we can not tell you that as we aren’t medically qualified and don’t know you and your health. Please don’t just do what people here say without checking. Good luck
You need to have an agreed plan with your rheumy team for varying your dose of prednisolone. I would be pressing for contact and advice from the rheumatologist.
How can you access your rheumatologist? Do you have a nurse specialist helpline? Do you need to ring or email the consultant's secretary? Your GP may be able to access the rheumatologist via email too.
Hi Sharpedge, sorry to hear you are having a flare and the co-codamol is not effective. This doesn’t sound easy for you, and understandably you are looking for advice on what you can do. I would suggest trying to contact your specialist nurse, rheumatology department, or a medically trained professional. I appreciate too that this is easier said than done, but no-one on this forum can/should give medical advice for you on changing your medications, though of course they can share their experiences.
As your appointment with rheumatology is overdue, I hope you have contacted them to get an appointment, rather than waiting for any routine appointment to come through? If the co-codamol is not effective, is there any alternative the GP can prescribe? It is really tough when you need support now, but please persevere with your rheumatology team/ GP. Our Helpline is available if you wish to chat further on 0800 298 7650.
I’ve had bad experiences phoning secretary’s and helplines in the NHS. Invariably you have to leave a message and that’s the last of it. Other than our local Sleep clinic the rest are dreadfully useless. My wife has a serious heart complaint and even after two visits to A&E, she has yet to see a cardiologist in the two years we’ve been here.
So I really can’t be bothered to try anymore hence my questions on this forum, self medication is really the only way.
Keep pestering Laurence, I know it’s tiresome but you do need help, give your GP a call too as they can help you or even get in touch with your rheumy for you 🤞🏻
Just keep shouting! If none of us shouted the the status quo would remain. If nothing changes we just can’t progress with any treatments or a better service. You’ve had poor results with cardiology - it sounds appalling - but you need help with this problem that you’ve got and you certainly shouldn’t be adjusting your steroid dose without expert help.
The system relies on complacency and compliance (you can’t blame it sometimes - I’ve worked in it for years and it needs help) but it’s no good if you become ill as that puts more strain on every bit.
NRAS is very good and have recommended you persevere with your GP. I hope you get results and your flares are settled very soon.
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