Acceptable Pain/ Tapering

[Lejazzhot]

Hi. I’ve tapered from 20mg to 13, 1mg at a time (supervised by a rheumatologist along with collective experience & advice of this forum)

With each reduction, i have had increased stiffness and pain which usually subsided within a day or two. I remained on the lower dose for some days before tapering another 1mg which always caused some initial discomfort that passed. My last reduction 6 days ago from 14 to 13mg has been by far the most stressful. The first day i could barely move; my hips and shoulders were locked. I was unable to extend or raise my arms and moved like the tin man. With little improvement the second day i thought hard about going back up to 14 or 15 but decided to hang in there to see if my body would accept the lower dose and release its grip which it finally did late the 4th day. Today is the 6th day on 13mg. I’m not as loose as i was at a higher dose- still feel it when i raise my arms or lean on elbow in bed trying to turn over, stand up etc- joints still somewhat restricted but ITS OK; the stiffness does improve over the day and the pain tolerable to none. I intend on staying here at 13mg for some time before the next taper.

BUT IS THIS OK? Should I be grateful for just some discomfort, some stiffness? Do you all live with some pain? Is the “goal “ other than total remission to find that acceptable level? A functional level of discomfort? The sweet spot? Is every taper a crap shoot?

Appreciate your feedback.

[DorsetLady PMRGCAuk volunteer]

The general idea, once the initial high dose has got the inflammation under control, is to reduce to find the lowest level that gives you that same feeling of relief. Some get 100%, but not all, but you should get at least 70% relief.

Unfortunately it doesn’t always work like that.

When you say, you remained on each new dose for a few days - how many days? Really you need to stay at each dose for a month to be 100% sure the new dose is sufficient. Sounds to me as if you haven’t done that.

It is slightly complicated in that for the first 2 or 3 days after a reduction it could well be steroid withdrawal. If pain comes on about 5 to 6 days afterwards it’s probably not enough Pred.

I would agree, stay at 13mg for a month to be sure you are okay. Hopefully you haven’t gone below the dose you actually need, but it’s a bit difficult to say from what you described.

Provided you are okay at the end of the month, then ease off the reductions slightly - 1mg, once a month!

[SnazzyD]

Hello, I agree with DL; you need to give the body enough time to get over the withdrawal and then settle properly into the new dose. I just have GCA so just had withdrawal pain which was quite bad without the PMR. At your dose range it suited me to drop 0.5mg over 2 weeks to make up the 1mg per month, never faster so I wouldn’t overshoot.

[PMRpro Ambassador]

Symptoms which appear immediately when you reduce the dose and then improve over the following week or so are almost always due to your body protesting at the change in dose. Some people are more sensitive to the change in dose than others. It is one of the reasons we talk about the slow approaches and making the change in dose as small as possible - it shouldn't be more than 10% anyway but some people struggle with even less. Before we developed the slow approaches we always used to recommend clearing the decks and diary before trying a reduction: make sure we had no heavy work we would attempt, no appointments we had to keep and spend that week resting and looking after No 1.

[Soraya_PMR]

How about trying 13.5, it’s still a reduction! But you might have met your level around 13/14 for this moment in time, OR your PMR may be slightly more active for some reason?

No harm testing things by going back to 14 for a couple of weeks to get back in your comfort zone. Then maybe try the 13.5?

Rheumatologists all have their own ideas of how to taper, see how many instructions we read on here! But you’re the one that’s living it, so 14 mg is no crime, only you know if you feel ‘right’. In the big scheme of things 1mg more is inconsequential, and sooo much better than brewing a flare for which you’d need much more.

[PMRCanada]

I have had a similar experience on my tapering journey. Usually I have a couple days of discomfort when I first begin to taper, despite introducing the new, lower dose slowly and progressively. Once I’m at the new dose full time, I stay there at least a month. Once I got under 10mg I had to lower in .5mg increments, and at times have “abandoned” the taper if the pain/discomfort continued more than a week, and tried again in a few weeks. I also get my bloodwork done monthly and monitor the results of my ESR and CRP levels in conjunction with symptoms to help guide me during my tapering process.

I am reminded of my pain levels when I accidentally forgot my dose once, and it didn’t take long to feel like I did pre-diagnosis. Some discomfort, stiffness and pain to some degree, has been part of my tapering process, it’s just a matter of me listening to my body, however overall, I’ve never felt like I did when symptoms of PMR first emerged. There is an element of experimentation along the way, as we are all different and process pred differently. I do know that my former rheummy’s textbook taper certainly didn’t work, in fact it caused me to flare and go back up to a higher dose for 6 weeks to mop up the inflammation.

Wishing you all the best as you continue with your taper.