Increasing dose again

[granofthewest]

Feeling disappointed as have followed DL slow taper advice, down to 3 mg of Prednisalone stuck to that dose for last 4 weeks but pain in hips and shoulders getting increasingly worse, it's an effort to walk very far. Decided today that the sensible thing was to follow advice and increase by 5mg for 7 days then go back down to 4 mg. I really hoped this time I'd be able to keep reducing but will just have to be patient I suppose. After over 4 years one wonders if I'll ever be off the meds. GP no help, haven't seen him since before lockdown and last phone conversation 18 months ago when he told me he wanted me off steroids asap. Don't bother contacting him as I'll only get the same advice again. Thank goodness for the sensible advice and support of this group.

[PMRpro Ambassador]

People have PMR for a lot longer than 4 years and still get off pred so don't give up yet. You have got to a lowish dose and most people would be delighted. There are a lot of doctors who simply do not understand and "get" how disabling PMR can be and can't see past "get off pred!

[DorsetLady PMRGCAuk volunteer]

No matter what kind of tapering plan you follow - if you go below the dose your PMR requires you go below it.. A slower tapering plan just makes it easier to get from A to B - and to make it even easier just use a longer period and a smaller reduction.

However it’s still not a magic bullet, and we don’t promise it is. Wish it were.

An understanding GP woukd make life better though.😊

[granofthewest in reply to DorsetLady]

Would never criticise DL plan, it's given me something to go by in order to manage this condition. I wasn't given any information by GP about PMR when I was diagnosed, just given a prescription for the meds and advised to taper down 1 mg every 3 weeks and be off steroids in a year at most. Was told Prednisalone was dangerous in other ways to my health but I would have regular appointments to monitor. Then we had lockdown and of course his plan never worked. I found this site on my own and everyone has helped me incredibly both in giving advice and information, tools I needed to cope.

[DorsetLady PMRGCAuk volunteer in reply to granofthewest]

Wasn’t suggesting you were criticising -but as we know if your PMR is stubborn -no matter how slow you taper it’s still difficult. A slower taper hopefully makes it slightly easier ..

[Meggsy]

Don’t despair granofthewest, I was ,on 4mg in July 2020 and have just taken my last (hopefully) 0.25mg last week. That’s four years. For my last two DL tapers I repeated each step three times. I was very apprehensive about going off the pred, whereas at the onset of PMR I was apprehensive about taking it (25mg April 2018.)

Maybe you could try tapering by 0.5mg. I had to do that at 10mg as I couldn’t go straight to 9 without a flare. At 2mg I had to go down by 0.25. At some levels I stayed for quite a while, eg 5 months at 5mg, for various reasons. Below 5 my tapers have been very slow, the lower the dose the slower the taper.

You will get there eventually granofthewest, just maybe a bit later than you had hoped. All the best from a lovely sunny winter’s day in Aus.

[granofthewest in reply to Meggsy]

Thank you for your positive reply, it's cheered me up to know that I may get off pred eventually. I have been tapering at 0.5 mg but will also try 0.25mg for a while to start when I get back to 3mg. Hope you remain pain free on your long PMR journey. Summer starting slowly here in England, warmer weather certainly helps a positive mood.