Sorry Tapering question 🫣

[Mercat]

Hi all

I’m wondering what everyone feels like when they taper…. My starting dose was 15mgs Gp has tried to reduce to 12.5 after 4 weeks but I was too sore so got put back to 15, then reduced Avis in after 3 weeks to 12.5, I have been on 12.5 for 4 weeks now however although I don’t have pain like I did before I have aches in my shoulders like I’m carrying a child all day ☹️ I’m due to reduce to 10mgs next week but I’m wondering how I will feel then? I am always going to feel achy and stiff?

many thanks 🫶🏼

[piglette]

Perhaps you should try reducing 1mg every four weeks. You should feel like you did when you first started on steroids. If you have PMR type aches don’t reduce, it will only become a flare. Under 10mg I would reduce by 0.5mg personally. The trouble is doctors want us to reduce at the speed of bats out of hell. You may have some pain for a couple of days when you reduce, a mild painkiller can help, but it should be OK again pretty quickly. If you get a flare after reduction it takes at least a week.

[Seasidelass in reply to piglette]

personally I think its better to taper slowly and let your body react to the reduction. Remember slowly gets you there, it may take longer but I think its better than lots of ups and downs with meds. Ive been on Pred for nearly 4 years started at 15mg now at 1mg its not been easy and Ive taken going down to the lower doses really slowly. Good Luck.

[piglette in reply to Seasidelass]

Hi Seasidelass. I think you meant your reply for Mercat not me??

[christi48 in reply to piglette]

This is so helpful!

[PMRpro Ambassador]

I suspect your starting dose wasn't high enough to clear out all the accumulated inflammation - leaving you there a lot longer might have helped. As piglette says - they are in such a hurry because they are so scared of pred and all they end up doing is causing problems. I would ask the GP to let you stay at 12.5mg a bit longer. and then go 1mg at a time.

[Bcol]

Hi Mercat, a few questions and thoughts. Did your original dose of 15mg take away at least 70-80%of the pain? If it didn't then you probably started to taper/reduce a bit too soon. Understand that can be a problem if Doc is insisting otherwise. Going to 12.5mg was obviously too big a jump down and possibly too early, if you are still having trouble then reducing further, at this point will not help. You need to stay at this dose, at least, until everything feels under control. At the very least doc needs to considering far smaller reductions, perhaps 1mg/month/5 weeks/whatever works. Continually yo - yoing up and down tends to make matters harder to get under control. A further chat with your doctor is probably needed. A perusal of the FAQ'S, and making some notes may be worthwhile before your next consultation.

[123mossie]

For me, I started on 15 but couldn’t reduce for 3 months, I did try but the pain crept back each time. I did then manage 12.5 for 4weeks then 10 for 4 weeks, after that 1mgm reductions using dsns. Everyone is different though.

[Grammy80]

I don't know if this will help.....It took almost 3 years for me to get down to 10mg. I reduced by .5mg every three weeks and my body did not rebel against that...at least no so far.💞

[Mercat]

Thank you everyone , I will speak to GP and hopefully we will both agree on a plan going forwards, I do want to get off pred as soon as poss but I also am under no illusions that PMR is still there and isn’t going anywhere for a while!! 😣

[Hidden in reply to Mercat]

I'm in my 4th year. Now tapering extremly slowly. Try just decreasing by 0.5mg....cut the tablet in half. Problem with going too quickly you'll only have to go back up again when inflammation increases.

Good Luck