Question about tapering.

[mgrogers99]

I have been on prednisone for 2.5 years and this is my fourth taper. I used methotrexate this time. I have tapered to 12.5mg prednisone for about 2 weeks and having a little tolerable discomfort. Yesterday the pain was terrible and I was so disappointed. I took 20 mg yesterday and today and it is finally okay today. Tomorrow I thought I'd return to 15 mg for a while. My goal was to get to 10 mg near the time I see my rheumatologist on 1/28. She and I are butting heads and my hope was to be successful which may not happen.

I know there are lots of ideas so please share. Thank you.

[123-go]

Hello, mgrogers99. It concerns me that you are setting goals in your mind when it is your body and your symptoms that rule. Others will be along to advise but in my opinion if 20mg taken a day or so ago is working for you I would suggest that the only way forward is to stay on that for a week or so to give the inflammation causing your pain a chance to reduce. Then you may be able to drop to 15mg although 17.5 may be better.Your symptoms should be setting your goals and those goals quite simply cannot be rushed; however much you want to be on a particular dose by your next rheumy appointment hoping won't cut it.

I see from your previous post that your rheumy is 'difficult'. He/she doesn't appear to be hearing you but it's your body and your health. In the long run, it's so much better and more likely to be successful to be on the correct dose of meds at each stage of your journey than yo-yoing up and down.

[mgrogers99 in reply to 123-go]

Thank you. I am not going to hurry it any more.

[123-go in reply to mgrogers99]

I'm pleased to hear that. I wish you well and please come back to the forum at any time for support. The advice you've had from the knowledgeable people here is invaluable. We are very fortunate.

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear about your issues, but from previous post and comments above it would seem that your Rheumy is one of those that believes PMR lasts a shorter time than it does for some.

You would have hoped that after a few flares she would have got the message that unfortunately you are one of the patients where it lasts longer.

Other than smaller drops and slower tapers (which take weeks to get from higher to lower dose rather overnight) there really is no other way forward - other than getting another, more open-minded Rheumy.

See this for slower tapering - healthunlocked.com/pmrgcauk...

And maybe this for length of PMR - rheumnow.com/video/dr-kathr...

Any way you can send second link to Rheumy?

[mgrogers99 in reply to DorsetLady]

Thank you!! My doctor probably attended...it was held here where I live. There are not many rheumatologists in my medical group and my family doctor cannot do it because we have specialists.. I have to take it slow I know. It seems the time varies by weeks with some of the tapering plans...the variation ranges from 2 to 6 weeks. Thank you again ..loved the video.

[DorsetLady PMRGCAuk volunteer in reply to mgrogers99]

You have to find the slow taper that suits you - and as we are always saying - one size doesn’t fit all! Good luck.

[mgrogers99 in reply to DorsetLady]

Thank you.

[PMRpro Ambassador]

To have tried 4 failed tapers in 2 years is possibly a reason for the problem - how have you gone about them? And if you are struggling at 12.5mg - there is no way you can force your way to 10mg just to see the rheumy. You have to reduce slowly, taking time at each new dose and NOT overshooting the point at which symptoms return. Do that, and you go back to the beginning. As I have just said somewhere else - a definition of madness is repeating the same action and expecting a different result.

If the rheumy is intransigent - can you not find one who understands PMR and reducing pred a bit better?

But my immediate reaction is that this may not be PMR - something that should always be considered when a patient struggles to reduce from 12 - 15mg and seems to need even more. Or, it may be PMR that is being accompanied by some of what I call the add-ons - like myofascial pain syndrome or greater trochanteric pain syndrome. And they respond better to more targetted treatments - shockwave therapy, physio, manual myofascial release therapy - that work on the specific problems which an increase in oral pred doesn't really.

[mgrogers99 in reply to PMRpro]

The other 3 times were done with my first doctor who I quit....this one is better but lacking so much. There are not too many choices in my medical group. Very discouraging. I will give up the idea of decreasing by appointment time. I asked for multiple specific lab tests (am an RN) last year to rule out differential diagnoses..all were negative.

[mgrogers99 in reply to PMRpro]

After thinking about all of this, I wonder how often people attempt to taper--every year, every six months, or?

[PMRpro Ambassador in reply to mgrogers99]

It should be a constant approach, once the starting dose has the symptoms under control, after about 4-6 weeks you can try the first reduction. Often at the higher doses it may be 2.5mg if your body can cope with that - a rough guide is 10% of the current dose. We recommend using a slowed taper so the change from every day one dose to every day the new dose is spread over a few weeks. Once you are at every day the new dose, staying there for a couple of weeks to be sure you are stable makes sense. Then you start on the next step in the same way. If at any point you get a return of symptoms during the taper step, you don't push it, you go back to the previous dose where you were OK. If you rush down the dose you may flare but have no idea where it went wrong. If you have flared during a reduction step - you wait 2 or 3 months at the good dose to be sure it is as good as you think and then try again. Or it may make sense to try sooner with a smaller step - if it was 2.5mg, try 1mg, if it was 1mg, try 1/2mg. But you shouldn't leave it as much as 6 months and certainly not a year although this paper

rcpe.ac.uk/journal/issue/jo...

keeps patients at 10mg for a year and find that reduces the incidence of flares from 3 in 5 to 1 in 5. Flares happen because you are being pushed to do something you are not ready for - the a/i part of PMR is still active and it is in charge.

[mgrogers99 in reply to PMRpro]

Thank you very much.

[Mewy]

I am sorry that you are dealing with this. I am in remission from PMR for 2 years now. I have had two bouts of PMR and have learned that this site is a godsend. The only way I could get off of Pred was to use the Dead Slow method. If you search using Dead Slow Method you may find a way to get off. By using this approach. Once I was free I started walking at least three times a week. So far I have had no relapses. My rheumatologist would not put me on methotrexate when my family doc suggested it. Just my experience but there it is.

Hope you find your freedom from the meds.

Mewy

[PMRpro Ambassador in reply to Mewy]

DSNS is listed under Tapering in the FAQs which are linked at the top of every thread, just below the post.