Hi all,
I had a pet scan recently and told l was in remission
Which is great news lve tapered off pref by using very low dose cocodamol
This seems to working really well
2 tabs of 8 mg each evening and that’s it!
I’m like a spring chicken for the first time in 5 years!
The only problem is l feel sick with it
Is there a way to stop this or an alternative
Paracetamol doesn’t seem to work.
Many thanks to all and l hope your all getting there!
Bev
Hello, always a great to feel at the other end of the tunnel! It’s generally said that normal pain killers don’t work for PMR/GCA, though the pain from Pred withdrawal and low adrenal function niggles are eased by them. Some people do think they benefit and often it’s an unofficial way to help decide if aches are due to a flare or something else. However, I would ask, what is the pain you’re getting that you feel you need cocodamol for? How long have you been off Pred for and when did you start? If it were me I’d be trying to wean myself off what is an opiate as this can have problems of its own, including dependency. If you are in remission, there should be no need of it for PMR’s sake so if there is discomfort it might be worth asking why and why is the prescriber not asking questions not least because you may have another issue that needs attention.
Agree with SnazzyD - if your PMR is truly in remission, then you shouldn’t need to be taking cocodamol, which has its own issues, as you’ve discovered.
What pains do you still have?
Congratulations on your good news.
The NHS website has a page about the possible side effects of cocodamol and things that might help.
nhs.uk/medicines/co-codamol...
Health unlocked also have a forum for it - there is a link at the bottom of the NHS information page.
I'm envious of your 'spring chicken' feeling - I'm teetering around 3.5mg a day and hopeful that 2023 will be the year I get off the pred!!
Do you think there is something else that could be causing the sickness? Of course it could be the co-codamol. If co-codamol is helping, I would have thought it is unlikely it is any remaining PMR aches it is helping. Of course it could be your adrenal glands staggering back to life.
Just to reassure you. I've been on Pred for 12 years, and before I was diagnosed with PMR I was living on Paracetomol tablets with 8mg Codeine. I had to take 2 every four hours or the back pain became unbearable.
Even after starting on 15mg of Pred per day I still found that I had to take at least 5 or 6 Paracetomol with Codeine tablets each day to keep the pain under control. Since then I've slowly managed to lower my Pred to 3mg per day, but I've still had to take strong painkillers every day to lessen the back pain.
Last year I was discussing this with my pharmacist and she said I must be addicted to the Codeine by now, and I agreed with her. However, recently my lower back pain (which was my first and on-going major symptom) began to ease all by itself, and I've been able to come off the Codeine altogether. Furthermore, I've not had any cravings for them either. Which surprised me. I still take Paracetomol tablets if I'm feeling achy, but I don't need the Codeine any more. So don't worry too much about Codeine addiction. I did and it turned out to be completely unfounded.
As to the nausea, make sure to take the Codeine tablets with food, preferrably something stodgy, or at least drink a glass of milk either with or just before taking the tablets. I find that it lines the stomach and helps lessen or even prevent stomach ache and nausea. If you are lactose intolerant then take oat milk or similar instead. The aim is to line the stomach and slow the absorption of the Paracetomol and Codeine until the tablets have passed into the gut, after which you won't notice so much discomfort.
Best of luck and let us know how you get on.
At one point on my tapering journey I was prescribed Cocodamol by my GP whilst awaiting a Rheumatology appt. Made me constipated.
Common effect - should always be prescribed with preventative medication or at least a stern warning!
Hi
l tried taking the lowest dose possible and it made a massive difference for a few weeks
But for now lm doing fine on naproxen
Thank you
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