Started reducing so updated profile

[Sibelius5]

To keep my profile updated, I've added that having been on 15 mg prednisolone for the six weeks since being diagnosed with PMR, my doctor yesterday recommended reducing by 2.5. That felt a bit much, so I've opted for a 1.25 reduction to see how that feels, and I've found I'm noticeably (though not badly) achier today. So I think I'll stay with that for a few days to see if it settles in before going to the 2.5 reduction my doctor recommended. There's lots of great advice and thoughts about reduction and tapering on this amazingly helpful and supportive website, but I'd welcome any thoughts on whether this sounds ok - (given of course it's very much about how it feels for me).

[piglette]

It is fairly normal to have steroid withdrawal for a day or two after reduction. Paracetamol or similar can help. If you have reduced too much it will take over a week for you to start getting a flare and to be aware you are going too fast.

[Sibelius5 in reply to piglette]

Thanks piglette - that’s definitely useful to know it will take time to see the effects

[piglette in reply to Sibelius5]

I am sure you will feel fine in a few days.

[DorsetLady PMRGCAuk volunteer]

Thanks for keeping bio updated, it really does help...

..agree that 2.5mg may be too big a step down [although it is in guidelines ] .. so sensible to split tablet and reduction..

On your aches today would say that is probably steroid withdrawal rather than anything more sinister - and if so, it should go within next few days... fuller explanation in this link -

healthunlocked.com/pmrgcauk...

[Sibelius5 in reply to DorsetLady]

Thanks DorsetLady - reassuring

[Charlie1boy]

Hi,

That’s what I would have done! From 15mg, I went to 13mg, then to 11.5mg, then to 10mg. It worked for me, which doesn’t mean to say it would suit you, as we are all different!

Good luck.

[Sibelius5 in reply to Charlie1boy]

Thanks

[Rugger]

I also went more slowly, from 15; 13; 12; 11; 10 over 6 months. (I had 1mg tablets too!)

All the best.

[KingWilf]

Hi Sibelius, I’m 4 months into my PMR journey and I struggled to reduce based on my GP’s initial guidelines which started with a 5mg drop 😳 (20 to 15mg) but then she said to drop 2.5mg. I managed 20 to 17.5mg, but struggled to get to 15 so went up to 16mg (with GP approval) then eventually to 15mg. I’m now trying to get to 13.5mg, but have found that a struggle too. Are you phasing the new dose, as per Dorset Lady’s taper plans? I managed 16 to 15 on a 5 week plan, but to get to 13.5 I’ve switched to the 7 week plan. I’m still quite achey, but life is a bit stressful at the moment, so I may need to extend the 7 week plan too.

I’ve learnt from this wonderful forum that slow and steady wins the race, so I’m in no rush. Despite her initial haste my GP is on board with the approach, and has pretty much left me to get on with it.

Good luck on this bumpy journey. We’re lucky to have some lovely experts to help us navigate our way through it.

[gillsky8]

It really does show on here how everyone is so very very different and I find the comments and advice around tapering so helpful. Interesting as I am about to drop down from 1.25 mg to 10 mg. Just over the weekend I thought, hmmm lets give 10mg a go today, probably a very silly thing to do, and sure enough noticed aching neck, shoulder , so back to 12.5. Will have to top up with pain killers on the next try.

[Chickswim]

Sounds sensible. You have to reduce gradually.

[Boss302Fan]

That sounds familiar. Wanted me to reduce by 5 mg every 4 weeks from 40 mg to 20 mg. The 2.5 mg reductions from 20 mg to 10 mg and then 1 mg reductions from 10 mg to 0. That is a definite recipe for disaster. Ask me how I know?

Use a DSNS schedule preferably one that’s af least 5 week, don’t drop more than 10%, and never decrease if in pain. Instead go back up to the dose where you last were at no pain, stay there until pain free again, then try again and 1/2 of the step you did before when you flared. Buy yourself a decent pill cutter with a centering guide.

[Sibelius5 in reply to Boss302Fan]

Thanks - very helpful advice. Remind me what a DSNS schedule is please - I have come across it and ought to know! And when you say pain free, do you mean all the time or most of the time? And is that noticeably sharp pain as opposed to the aches I notice when I move but don’t feel if I don’t - if that makes sense.

[PMRpro Ambassador in reply to Sibelius5]

It's one of the tapering schedules to be found under Tapering in the FAQs.

[Boss302Fan in reply to Sibelius5]

The specific DSNS is DL’s 5+ week Simple Taper,

Days shown are current target New Dose, missing days take the pre-stepdown old dose

Wk1: Sn, Th

Wk2: Sn, Tu, Th

Wk3: Sn, Tu, W, Th

Wk4: Sn, Tu, W, Th, Sa

Wk5: Sn thru Sa

Wks 6 & 7 are optional if needed and are a repeat of wk 5. Else, decrease 10% for next New Dose and return to Wk1.

For me, “my” definition was literally free of PMR pain symptoms and I could definitely tell the difference. First my PMR expressed itself primarily in my hamstrings, and if a really bad flare, also in my right shoulder if I attempted to raise my arm above shoulder height.

If I had any pain in other areas I’d take 2 extra strength Acetaminophen and 600 mg Ibuprofen and every time that alleviated that pain supporting my belief it was unrelated to PMR.

The pain I felt with PMR was a jabbing-like pain in the hamstrings, or if a milder flare an burning like ache in the same location. Usually noted if driving more than 30 mins and partially alleviated by turning on my heated seats.

This was all pre DL’s simple taper, and a too aggressive taper from 60 mg pushed on me by my Rheumy. In fact I only had moderate flares when I took the Rheumy’s instruction against my better judgement while on DL’s Simple Taper.

So, when doing it “my” way mainly using what I learned here to determine what would work for me, I found if I was going to flare during the 5 wk Simple Taper it was early afternoon, on Thursday of week 3. I took my new dose around 8:30-9AM, around 2 pm I’d get this…slight discomfort in my hamstrings. Not really a pain, more of just don’t feel right. So I immediately would take the step decrease (eg if new dose was 4.5mg that I took that morning, I’d take another 0.5 mg to bring it back to the old dose of 5 mg immediately) and stay back on the old dose (5mg in this example) for 2 weeks, and then try again using the 4.5mg as New Dose. Next day I felt like new again and probably could have tried again after 1 week of no pain, but I was conservative - it’s not a race, there’s no prize if I get off Pred sooner than someone else, and a bad penality if push it and get under the PMR activity curve. Why risk it?

I had side-effects to Pred. Starting at 80 mg and continuing until I got to 10 mg I felt I was always on a caffeine high, my GP even noticed and chuckled. But I had no trouble sleeping. Ocular pressure increased and I was given an Rx for eyedrops-took care of that issue. Blood pressure increased to pre-hypertensive, Rx for Metoprolol succ ER-solved that issue. No stomach problems but then again I’ve had GERD for over 10 yrs and taking Prilosec 40mg 2x/d. I actually took the 80 mg on an empty stomach in the ER with no stomach issues and 10/10 pain went to zero in less than an hour. My DEXA scans were fine very mild osteopenia and I countered with Calcium citrate, D3 & K2. Second DEXA scan 2 yrs later no significant increase.

Disease ran its course in 2.5’years. Except when tapering down to 20mg from 80 mg, I felt no symptoms from the step down. On the way to 20mg the step would cause me to feel wozzy the next day, then fine the following, or 2’days following that maybe a flare. Remember I wasn’t on DL’s Simple Taper yet and every 4 weeks decreasing by 10 mg or more! Once on DL’s taper, no more wozzy. Also I attribute no AI symptoms to doing 10%, or less step, reductions and not pushing it. I had my Adrenals challenged when I was at 2mg and it showed they could produce cortisol. I had it done even though below 7 mg Pred I didn’t have any issues.

As I got into the lower doses my side effects reversed.

Hope this helps. Remember, everyone is different. Pay attention to your body and why be uncomfortable if you don’t have to be. Attempting to run your dose under the PMR activity curve isn’t going to affect how long the disease is to continue, unless some new study has discovered something I haven’t read about. Listen to what PMRpro has to say. She won’t steer you wrong.

[Sibelius5 in reply to Boss302Fan]

That’s incredibly helpful in all the details you’ve given. Thanks very much and for the sound advice.

[DorsetLady PMRGCAuk volunteer in reply to Sibelius5]

Actually the DSNS taper and my taper [DL] are slightly different… although the aim is the same!

Mine is based on the original DSNS but it is view as a weekly reduction plan as  Boss302Fan has laid out in his reply, the original is not based on weeks as such, but on days.

I found my brain coped better with the weekly approach …. But it’s horses for courses… doesn’t matter which you use so long as it works.