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[59kimmy]

I am on 20mg prednisolone & my GP wants me to taper down. Very worried as l do not want to be like l was at the start, l could not feed myself as could not raise a fork to my mouth, pain levels through the roof. I also have COPD, / ASTHMA & OSTEOPOROSIS. I am due to retire January 2025, do not know what benefits l could be on? Any help would be a godsend thankyou

[piglette]

Is the pred working? If so you should be fine reducing if you go slowly but surely. If you start having any pain stop reducing and possibly go up again for a few days. PMR can be life changing and it is important to rest, rest, rest.

[59kimmy in reply to piglette]

Thankyou so much

[Bcol]

Good morning and welcome to the forum. DL and others will be along later with lots more information for you. If you could add some things into your Bio it will help us give replies/answers that are relevant to you. e.g. when we're you diagnosed, when did you start Pred, other medication etc.

If you have been on Pred for around four weeks you should be OK to start a slow reduction, there is a lot more info in the FAQ'S, but DL and others will be along shortly with useful links.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Here’s some information on what to expect -

healthunlocked.com/pmrgcauk...

Not sure what you mean by benefits? Are your on any now for your other health issues, and is your retirement purely on age grounds, or medical reasons. You may be entitled to Attendance Allowance if you a have issues looking after yourself- or PIP id still under State Pension age -

citizensadvice.org.uk/benef...

citizensadvice.org.uk/benef...

See you have an appointment with Occupational Health coming up, they should be able to guide you. Or maybe have a look at the CAB website- you can access other information from above link.

[Zebedee44]

I was unable to work at the onset of my PMR and qualified for Employment and Support Allowance (ESA which I think is now Universal Credit ) and PIP. It is a nightmare applying for them so do try and get help from Citizens Advice or a local employment support agency. Good luck,x

[Omanain]

This is just how I felt (5 years ago) If only the doctor had explained tapering to me instead of just saying we have to get you off pred as soon as possible. I felt I had been given a magic pain killing wand only to have it snatched back again. Look at the slow reduction plans here and use one that suits. All the best x

[59kimmy in reply to Omanain]

Thankyou so much

[PMRpro Ambassador]

Hi and welcome!

You start on a dose that is likely to be too high to get the built up inflammation under control and cleared out. Then you taper the dose slowly to find the dose that deals with the daily new batch of inflammatory substances and symptoms as well as that starting dose did. This is the lowest effective dose and at the start it is likely to be higher than it will be later - but everyone is different and no-one can tell you what dose and how long it will take to get to it.

What is important is that you taper slowly - staying at the new dose long enough to be sure it is still enough and making the steps down reasonably small. A standard taper would be 20 to 17.5, 15, 12,5. 10mg with about 3 or 4 weeks between each step down but some people struggle with even that and have to go more slowly. You can only find out by trying - and do resist any attempts by a doctor to get you to go faster.

Can't help with benefits - they tend to be restricted since PMR is regarded as a disorder that can be well managed with steroids. However, they are related to what you can't do and your set of comorbidities may make a difference. Most benefits are for illness that restrict you for more than 6 months - and while PMR lasts longer than that, you are usually able to function reasonably well so it very much depends what your job is. I wasn't quite as bad as you describe but I worked as a freelance translator for 5 years of PMR without any pred, No work, no money so there wasn't much choice.

Initially perhaps be signed off sick until you see how you manage but as I say - depends on your job, do you get sick pay over and above statutory sick pay? I didn't even get that as self-employed.