When a taper heads South

[bunnymom]

I am 5 days at at new dose 7 from 7.5. Groin pain is better. Think that was from over use exercising. But the last two days I have had such stiffness and a return of pain. I was almost teary at the grocery store. Hips sore, legs sore, could barely put on socks. Sat with heat pads over my neck and hips. So I took an extra 5 to zap it all this morning. I refuse to suffer anymore than I have to. So the question is..I then go back to 7.5 and when do I try to reduce again? After 3 years this is still hard to figure out. What causes what? I definitely still have pred head. Thanks for your help friends.🌿

[DorsetLady PMRGCAuk volunteer]

When to reduce again? ...once you feel better at 7.5mg. But no rush, it’s a very difficult level for many people.

As you say, initial problem probably due to exercising....your PMR is still active, so you still have to be wary of overdoing anything! I know it’s a bore, but that’s how it goes. Anything you do that is slightly outside your normal or comfort zone can start a flare, so it’s slowly, slowly.

I always thought it much more difficult to reduce below 10mg than it was above that figure.

Good that you’re only dropping 0.5mg a time, but are you using a slow taper as well?

[bunnymom in reply to DorsetLady]

Yes I am using your plan. So tomorrow I should just go back to 7.5? If I need to I will add another 5 also? Thanks

[Hidden in reply to bunnymom]

I have blast a 5mg then gone down to the dose I was last ok at the next day a couple of times. It's depends on your body I think. I overdid it the other week and 7 days later I still had delayed onset muscle soreness. I have strong painkillers and they cleared the pain. But I would have done an extra 5mg for a day then back to six.

[Hidden in reply to bunnymom]

Obviously, 7.5mg if you did it!

[DorsetLady PMRGCAuk volunteer in reply to bunnymom]

If it were me I’d take the extra for another day or two - and than down to 7.5mg. Then settle before you try again. Hopefully next time will be successful.

[bunnymom in reply to DorsetLady]

I think I'm going to do that as I still don't have the pain and stiffness back to where I was. Pardon my French but this is the damnest thing to try and figure out.

[DorsetLady PMRGCAuk volunteer in reply to bunnymom]

Yes it is.....but as we’re always saying..it takes as long as it takes! There seems to be no rhyme nor reason why is affects people so differently.

[PMRpro Ambassador]

Give it at least a month. And don't forget - it is perfectly possible you have reached your destination for now. It doesn't mean you won't get lower, just not yet.

[bunnymom in reply to PMRpro]

Ok so after a month if I feel recovered try again. Thanks

[PMRpro Ambassador in reply to bunnymom]

Yes, but don't force it. If the same happens again, rinse and repeat. After 3 times accept that you have got where you want to be - for now. Give it a couple of months then. But a lot of people find that it may take 3 times to get down a step. However small.

[Twopies in reply to PMRpro]

after a couple months then, does she try 7 straightaway again, or does she do the 84 day dsns plan? Asking for a friend. (Smile)

[PMRpro Ambassador in reply to Twopies]

You know what I'll say - the longer the DSNS approach the gentler it is!!

[bunnymom in reply to PMRpro]

Instead of going longer can you go smaller like quarter doses or is it about the same? I'm thinking Dorset Lady's approach using a quarter instead of half dose.

[PMRpro Ambassador in reply to bunnymom]

Whichever works for you - everyone is different.

[Nitrobunny]

That is so true. 7 is one of the doses I had to stay at for the longest time. It was not until a year later that I was able to go lower and stay there for no reason except it just happened to be the time my body was going to accept a lower dose. I always feel a bit yucky the first few days of any new dose as I adjust but if it continues, it’s not time. So far I’ve managed to get to three with no major issues. I’m less than a week in at 3 and I’m feeling fatigued but better every day so I’m probably going to be ok. It’s quite the dance!

[bunnymom]

That is so true. Very individual and no rhyme or reason.

[navejasjoe]

Many of the experts in this forum have stated that everyone has their own level of taper before things go south again. It is so true. My wife has tried several times in the past to get below 10.5mg. When she gets to 10mg, after a couple of days, she almost gets back to the day she was diagnosed with PMR 3 years ago.

Joe

[Maggiemudshark]

I had trouble with pain and stiffness reducing from 7.5 to 6.0 which I am at now it took in total about three months reducing from 7.5 to 6. I came down with a flu like illness for 2 weeks in early March and added 5 mgs. to my 6.5 regular taper dose for about three days then went back to 6.5 when I felt better am now at 6.0 for almost a week. It is frustrating but glad I can be stable at 6.0 Going to stay at this dose of 6. for another week and try to reduce by another .5 mgs after a week. I had blood work done and result for CRP was .1 which to me indicated I was not accumulating inflammation. So onward and forward with the taper.

[PMRpro Ambassador in reply to Maggiemudshark]

Remember though that at this level it isn't just the PMR inflammation but also returning adrenal function that is a factor. Slower is good!

[Maggiemudshark in reply to PMRpro]

I agree slower is better and I do not want to rush my taper. I use the DSNS approach and I plan to stay at the new dose a bit longer if I need to. The lower doses are more difficult to taper from. Most likely due to getting the adrenal glands to start functioning again as you indicated.