advice

[Omg3]

I was diagnosed in October put on 20 mg Prednisolone and after a few days pain was so much better second week gone and could walk the best in a long time went down to 15 mg after 4 weeks but soon started having pain and once again unable to walk as legs painful and heavy back up to 20 mg I’m not in pain now but knees are very achy and walking any distance is difficult I use a stick example is can just about make it around the supermarket then back home exhausted is this normal I have read loads of posts and can’t really make up my mind. I live alone finding it difficult to do anything at all .

[DorsetLady PMRGCAuk volunteer]

hi and welcome..

Most would agree that a drop from 20mg to 15mg was too big…. the usual guidelines would advice a drop to 17.5mg, but many fund that difficult, so agree with their doctors to only try reducing 1mg at a time. Think that’s probably what you need to do.

Good news is that the majority of your PMR aches are controlled -but many do complain of leaden legs…had you mentioned legs in the title of your post it may have given a list of related posts.

Just a thought - have your knees been X-rayed to check for osteoarthritis -,and have you tried ordinary painkillers or gels to see if they help?

Hopefully others that have same issue will be along to advice what helps them, but in the meantime have a look at this for general info,-

healthunlocked.com/pmrgcauk...

.

[Omg3 in reply to DorsetLady]

Yes I have mild osteoarthritis in both knees

[DorsetLady PMRGCAuk volunteer in reply to Omg3]

If that’s the case then usually the dose of Pred you are in would mask the pain..so I’m guessing it PMR related therefore…

[Sillydogsmum]

There are not too many posts from folks struggling to reduce from the higher doses for PMR, but dont despair ,there are plenty of us about ! Some lucky folks can do the 20, 17.5, 15 every 3 weeks etcetera. Problem is that we are newly diagnosed and don't as yet know how active our disease is and what the optimal rate of reduction should be for our individual situation.

[SheffieldJane]

It’s all been said Omg3, you went too fast and are paying a heavy price. Give yourself a breather before you drop by 1 mg, and do the barest minimum, cuddle up, watch telly , read good books, have easy food, lots of sleep and rest. It’s a rotten time of year, wet and cold. Don’t however miss the odd sparkly day we get. Have a little walk in the fresh air. Get your food delivered and hibernate. This won’t last.

[Sophiestree in reply to SheffieldJane]

great reply

[Omg3 in reply to SheffieldJane]

Thank you but my doctor is still saying to do the 5 mg drop and I only have this dose

[Sillydogsmum in reply to Omg3]

?cut it in half, its probably scored. Then order more pills and do you own thing ? If you hit on a nice steady reduction doc unlikely to disagree. I cant do the 2.5 mg drop. FWIW I am now trying 1.5mgs ev 4 weeks. If i cant do this i'll do the DSNS 1mg every 5 weeks. Am on 17.5mgs after flare from Covid vax, had to go up to 20mg again to get that to calm down😤. All trial and error.

[Omg3 in reply to Sillydogsmum]

Thank you I’ll try cutting in half

[PMRpro Ambassador in reply to Omg3]

Idiot - them, not you!!! The recommended drop is 10% of the current dose. 5 is 25% of 20 ...

Some can do 5mg at a time, the majority with OMR can't. 5mg is the standard drop when pred is used acutely in asthma or other acute inflammatory disorders. PMR id CHRONIC.

[Bcol]

Hi and welcome. One of the hardest things is accepting you have an illness that you had probably never heard of and b) that for the time being you will have to accept and make changes to your life style and probably diet. Things will improve when you get a sensible tapering scheme in place and start to understand what works for you and what doesn't. It's early days and when you have time, start to peruse some of the articles in FAQ's where there is lots of relevant information and help. If/when in doubt don't hesitate to ask a question/s. No questions are daft and there is always someone around to help/listen.

[KingWilf]

Hi Omg3, welcome. I struggled to go from 20 to 15 and had to go back up to 20 for a week before reducing to 17.5. I struggled from 17.5 to 15 too, so did 16, 15, 13.5 and now tapering to 12. Are you using one of DLs tapering plans? I’ve had success with 5 weeks for some tapers but have had to increase to 7 weeks too. You can get 2.5mg pred, or you could get a pill cutter and split the 5mg yourself. Going forwards you will need some 1mg tablets too, so you can combine them into a suitable dose. The key thing is to take it slowly so your body can cope with the adjustment. I hope you can get your GP to understand the need for a slower reduction plan to better manage your symptoms. In the meantime, as others have said, take care of yourself.