Taper setback

[PMRDude]

I was tapering from 60mg prednisone since late May. Got down to 30 tapering 5mg every two weeks, then the wheels came off. Extreme fatigue, joint and back pain, and that fog of disorientation that seems to go with it all. Best way I can describe it it it feels like an extreme case of sleep deprivation goes on 24/7. Rheumatologist bumped me back to 40mg, but after 5 days of the 40 things seem to be the same. Any advice from those who have been there-done that?

[PMRpro Ambassador]

40mg is maybe not enough to clear out the inflammation. But are you resting as much as possible? You have a serious systemic illness that is still there, the pred is only managing the symptoms. And you do have to behave as if you are a poorly person ...

[PMRDude in reply to PMRpro]

Thank for the quick reply. And thanks for all the wisdom you lend to this group! I may be pushing myself to much. But still not doing a lot. I was able to retire this June, so I have the leisure of resting-napping when I want. One thing I seem to be able to do is walk, and I’ve tried to do that each evening I felt up to it. Have you had any experience with persons needing to bump the prednisone higher, or, does this 40mg dosage eventually kick in to get back on track with a taper ( and I will definitely taper slower next time...). Don’t want to get caught in the yo-yo...

[PMRpro Ambassador in reply to PMRDude]

I don't have a diagnosis of GCA, I probably have large vessel vasculitis but 15mg was enough to manage all my symptoms. But in my experience with others it may be that you need more than 40mg for for longer than just a month. There are people who needed 80mg to get started.

I'm sure DorsetLady will be along at some point - she really does know loads about GCA problems.

[DorsetLady PMRGCAuk volunteer]

As PMRpro rightly says you may have gone below the level you actually need. And even the increase may still not be quite enough.

The problem with tapering every 2 weeks sometimes you are not 100% sure your current dose is controlling the symptoms significantly before you drop to the next step. It can take at least 2 weeks, sometimes longer for the body to react to too low a dose. You may find, for example that 50mg is just only enough, so when you drop to 45mg you find it’s not!

That’s why it is much better to stay at each dose for 3-4 weeks each time - even at high doses.

Plus, as also said, you do have a serious illness - and the Pred is only controlling the inflammation caused by PMR/GCA, not the illness itself.

Have a look at this -

healthunlocked.com/pmrgcauk...

[Blearyeyed]

It does sound like the taper could be too quick.

Depending on how long you have been on Pred , how much you are trying to do, and your overall health generally , the increase to a new dose after a flare comes in can take a longer to have the same effect on your symptoms than the initial doses you got when you were first diagnosed.

If you have other health conditions , especially those that can cause pain in the joints as well , they can also add to the pain but are not necessarily treated by the increase in Pred.

Sometimes with these conditions , especially ones that involve nerve pain , either getting approval to increase your other medication , or taking a regular dose of Paracetamol through the day in the first few days after the increase can ease that additional pain.

Making sure you scale back on physical or stressful activity and just giving chance for your body to cope with reducing the inflammation for several days also helps . Drink lots of fluids , eat light , take your supplements , quality rest in a comfortable space.

Post Flare inflammation self care is important to allow the steroids to do their work as quickly as you need them too.

The important thing is working out a way to calculate how you feel yourself .

Do a quick pain , headache and symptom score test each day to see if you feel if the pain and symptoms are reducing all be it slowly.

If you are not getting any relief past that you felt with the increase , despite doing self care and having normal pain kilkers , or you symptoms are getting worse ( especially headpain , eyesight , breathing) , then it's time to ask the GP or Rheumy to allow a further increase and do tests to check exactly what is happening , not just for PMR/ GCA but for other possible causes as well.

[NanJean]

With GCA & PMR they started me on 60 mg. Eventually, I found that I had to be on whatever dose I was "down" to, for 3 weeks. As there were symptoms of just reducing Predisone, like the muscle cramps, I needed a solid 2 weeks on for these to subside. Then, the 3rd week on that dose to see the PMR/GCA symptoms were covered. No temporal headaches or tenderness.