groovy guy

[groovyguy]

Have been on pred for over 7 yrs. have been hovering from 10-12 mgs since Christmas but as of today I really cant tolerate the pain. I also have asbestosis and osteo and arthritis of most kinds and am really saddened that I may have to go back to 20mgs but I really have to get back some quality of life. I am 78

[SheffieldJane]

I am really sorry that you are suffering so much, my heart goes out to you groovyguy. Can your doctor refer you to a pain clinic? This needs to be addressed. You sound as if you are at the end of your rope.

What has your tapering process for Pred been? What is your diagnosis eg PMR This is the early hours in the Uk. I expect you will get more responses in a few hours. Hang on in there! 🌈

[groovyguy in reply to SheffieldJane]

I have been reducing by 2mgs a fortnight up until Christmas when I decided to get of the couch and do some gardening but alas ive been getting progressively worse. neck, hips and knees ache and having trouble getting any shut eye. It seems to be easier in the day

[Longtimer in reply to groovyguy]

How awful for you...a lot to cope with.... I have had PM R 8 years and have to say if I lowered by 2 mg a fortnight I wouldn't be able to move for pain!.....that is very fast....please try slower if you can.....it might help, along with the pain clinic....good luck....

[groovyguy in reply to Longtimer]

Thanks longtimer I will listen to all you guys have to say. I heard someone say "Together we can make it" That gives me heart.

[scats in reply to groovyguy]

I agree with longtimer, it struck me as very fast.

You are right we are all in this together, come here any time you need support.

I know just how you feel about your garden, mine is overgrown and full of weeds and all I can do is watch and weep. Good luck to you.

[Thelmarina in reply to groovyguy]

I made the mistake of gardening too - and regretted it afterwards! You are definitely not on your own and thank goodness you have found this Forum. Others will advise but I would suggest that you return to the dosage that worked best for you and stay there for a few weeks. When you’re ready to taper use the dead slow method. Here’s the link. healthunlocked.com/pmrgcauk...

If you do this your pain will be relieved and you’ll feel more like your old self, and get your mojo back! Good luck 👍

[Mary63 in reply to groovyguy]

2mg a fortnight is so fast you probably have gone past the dose you need to stay on for a while. I don’t start to get symptoms of too low a dose until about three weeks after a dose change.

At what dose did you last feel the same pain relief as you noticed right at the beginning? Because that is probably the dose you need to be on now. Have you tried DSNS? I would! And then stay at least one month on each dose. Tortoise not hare! Good luck

[Blearyeyed]

Are you on any other Medications for Pain and other issues as well as the Pred?

SJ said exactly what I was thinking , you could do with a referral to a Pain Management Clinic , even if you have already had one , as they may be able pinpoint pain issues you aren't having dealt with yet. They can also suggest combos if Medications which may help if you need something with your Pred for different types of Pain. They have more knowledge and access to Add on Therapies for you to try and Occupational Help and Physiotherapy.

It might mean you are out of the garden a little longer though , until they can help you out a bit more.

Good luck and let us know how you get on.

[groovyguy in reply to Blearyeyed]

Thanks heaps, I will keep you posted

[PMRpro Ambassador]

Yes to the suggestions of Pain Management - but above all you need to sort that reduction out. 2mg per 2 weeks is far too fast and you are possibly permanently in steroid withdrawal discomfort. At 20mg 2mg per month is the tops you should be aiming for - and QOL is all.