Starting to taper

[daworm]

So I've been on 20mg for 4 weeks, before that 1 week at 15 which wasn't enough...had blood work the other day, Dr. wants to try a taper now...17.5 for three weeks, 15 for three weeks, then to12.5...how does this sound?? He's said if something doesn't seem to be working I can go back up..he said after 10 is when the real slow taper usually starts so he seems rather knowledgeable for a GP who doesn't see many if any other people who have PMR...I have enough "crappy days" to be apprehensive but of course I want to taper down....

[Rosbud]

I have to speak to my GP about just this next week , started on 15 , dropped to 12.5 then had to go up to 20 for 1 week now been on 15 for 3 weeks and I'm worried he will want to drop me 12.5 again as had A flare on that last time , so do I ask can I try 14 for A month and slowly taper , any advice ?

[daworm in reply to Rosbud]

Well this will be my first attempt at a taper, so no advise from experience but I know for myself, if I think it's not going well I will let him know and go back up a bit and try again...like others say on here, slow is the way to go...what's the rush...prednisone is strong stuff, 1mg makes a difference for many...hopefully my attempt goes well!! Take charge, tell them what YOU want and what's working..luckily my Dr listens and seems to agree when I tell him something...if he didn't I would be looking elsewhere..

[Rosbud in reply to daworm]

I'm really hopeful as my GP so far has been fine so fingers crossed x

[DorsetLady PMRGCAuk volunteer]

That sound okay, but unfortunately it doesn’t mean it’s going to work out like that.

Personally I stayed at every dose for a month rather than 3 weeks, but that seems to be the advice nowadays. You may well get to 15mg easily enough, but after that many find it a bit sticky, and I would be inclined (as you have already had a problem at that dose) to take 1mg or 1.5mg drops.

If your doc queries this slower taper after 15mg remind him of the advice - no reduction should be more than 10% of existing dose - and let him work it out!

[Rosbud in reply to DorsetLady]

Thank you , I will definitely remind him

Of the 10 percent rule x

[PMRpro Ambassador]

In the published reductions in the medical literature 10mg is where the slow taper starts yes. Doesn't mean it works for everyone though and that is why we make such a song and dance about SLOW!!!

There have never been any studies about the best way to taper - until now. The Dead Slow approach is being used in a clinical study in Leeds and the last feedback I had nearly all the patients using it had said they found it better than any they had used before. If someone can drop quickly that is great - but loads don't manage it at the speed the doctors suggest.

There are doctors who will tell you that flares are part and parcel of PMR and reducing pred. A large number of people who have used DSNS have told me they got to a low dose without a single flare - they may have had some niggles and gone back to the previous dose and waited a month or so and tried again but they didn't have to shoot back up to a high dose. A group of top experts said some years ago that the main cause of flares in PMR and GCA was reducing too far or too fast and it was they who said "never more than 10% of the current dose". Very often the return of pain is due to "steroid withdrawal rheumatism" because the drop in dose was too big. But you can't tell - using the DSNS or DL's version you minimise the chances of it being due to withdrawal so it is most likely to be due to the dose now being too low.

There is a big difference between reducing the dose and tapering but a lot of doctors don't get it.

[Rosbud in reply to PMRpro]

Thank you so much as ale peats your advice is invaluable x

[Soraya_PMR]

I can only share my experience...

I was on 20mg for 4 days. Yes! The luxury of 4 days, but they were fairly miraculous!

Then GP said to drop to 15mg. Which I did, and initially that was OK, but by 3 weeks in the PMR stiffness was coming back, and I felt pretty rubbish. I returned to the GP who said this was an indication that I did not have PMR. I said it was an indication that I was on a sub-therapeutic dose. He threw his hands up in horror and said to 'do what you like'. So back to 20mg for 3 weeks and I felt marvelous.

I dropped to 17.5 without much problem; but getting to 15 again was difficult and I had to go via 16, then 15 was OK.

I was just happily alternating 15/14 and getting there when I finally saw my consultant. She wanted me to drop to 12.5. I tried with 3 days of withdrawal pain, 3 days of OK, then day 7 was bad, day 8 was worse, and by day 9 I got stuck on the stairs. (This was valuable for me to differentiate steroid withdrawal and a return of PMR.) So back to 15mg for 3 days, drop to 14, 13, 12.5, and now doing OK on 12mg.

I did what the GP wanted and it back-fired.

I did what the consultant wanted and it back-fired.

Now I'm doing it my way. I'm having to live it 24/7. Not them!

[Marilyn1959 in reply to Soraya_PMR]

Hi Soraya, I am interested in the 9 day pattern you describe above, when trying to reduce to 12.5mgs, as I have experienced this twice when trying to drop from initial dose of 15mgs. Can you clarify whether you are putting your response down to PMR or steroid withdrawal? Many thanks.

[Soraya_PMR in reply to Marilyn1959]

Day 1 of reduced dose I developed shoulder aches by the evening (take pred first thing I wake up in morning)

Day 2 the shoulder pain was there all day.....I had a feeling my body was reacting to the lesser dose, so I stuck with it, took paracetamol for lower back ache, which took the edge off.

Day 3 still shoulder aches, but reduced through the day.

Day 4,5 & 6, no particular stiffness or aches anywhere.

Day 7, hips and thighs stiffness and that buzzy hot achey pain starting.

Day 8 more hips and thighs.

Day 9 stiffness increase, went for a short walk, had to rest 3 times on a flight of steps, thighs screaming. Felt tired and generally miserable/unwell.

Day 10 took 15mg, Felt much better

Day 11 kept at 15 (found I had a UTI, sudden symptoms, don't think it was influencing the week before)

Day 12 15mg

Day 13 dropped to 14mg, (felt that was 'safe' as no more symptoms from UTI).

So I put days 1-3 down to Steroid Withdrawal. Whatever it was it increased then abated.

3 days in the middle I felt OK, but expect the inflammation was building faster than my new reduced dose could handle.

Days7,8,9 inflammation now at a level over and above what the pred dose could dispel, hence pain and stiffness.

Day 10, higher dose kicked the inflammation out again and I felt better.

Whether steroid withdrawal gives me shoulder pain and increasing inflammation gives me hip/thigh pain, I have no idea. That's the way it was on this occasion, but may not be relevant???

Hope that helps Marilyn. Try dropping to 14mg, when you succeed there, you'll feel more in control, and it'll have given you a slightly lower dose, which after all is the aim. Good luck.

[Marilyn1959 in reply to Soraya_PMR]

Thanks Soraya for such a comprehensive response. Exactly mirrors my experience. Interesting that we both had days when we thought all was going fine but das 7-9 seemingly the s**t hits the fan! Am currently trying 13.5mgs (on day 3) and also experimenting with when I take it to try to eleviate shoulder pain between (when I wake up for approx four hours) until pred kicks in. So far have taken tabs 5am, then 2am and will be taking them at a about 11am tonight. So far so good, but day 7-9 will be the test. Will let you know whether night time meds make a positive difference.

[Soraya_PMR in reply to Marilyn1959]

Good to know we’ve both had very similar experiences. Your comments are helpful as they confirm my thinking.

I tried pred at 2am, led to evening pain. Mornings were good though. I do occasionally take early if I have something unavoidable early morning. I think the early dose tends to upset my tum, despite yogurt. But definitely worth trying.

Yes, do let me know how things go, comparing notes is always useful. I’m going to try 11mg, but have delayed it as I have a busy Monday and Tuesday, so maybe Wednesday if I’m not too wearied by then.

[Marilyn1959 in reply to Soraya_PMR]

Hi Soraya. How is tapering going? I have at last (six months) successfully tapered from 15mgs to 13.5mgs!!!! Hurrah!!!! I am taking meds regularly at 10pm which has given me my days and life back again. My body reminds me to take meds since I start to stiffen about an hour before meds are due. Will start trying 12.5 Wednesday, as I am conducting my choir this evening which takes it's toll on shoulder muscles! Hope you are ok.

[Soraya_PMR]

Oh well done. Great to hear you’re back in control 😀

I dropped to 11mg, 3 days of niggles, then evened out. I’ve dipped my toe in 10mg, but that is back-firing. I was ‘driven’ psychologically to 10mg (it being half my starting dose) but logically it was far too soon. Then hubby made redundant, a friend is poorly, and another died. Default status, do too much supporting others! Plus my dog is poorly and keeping me on my toes!

So today back to 12.5 for a couple of days, then plan 12, then 11.

Rheumie appt 12th December. I’d like to be at 10mg. But I don’t think it’s feasible or sensible. Maybe the new year.

[PMRpro Ambassador in reply to Soraya_PMR]

Sorry to hear your woes - did hubby at least get a half-decent redundancy payout?

No - don't even TRY 10 for mid-December!

[Soraya_PMR in reply to PMRpro]

Err, no, not a bean. Fingers crossed, new job sorted today.

12.5 has lifted the “Ugh I’m ill” feeling today, but stiffness persists, and aching like an achey thing tonight. Think a 2am dose may be in order to zap IT before IT zaps me.

Meanwhile, it’s wine-O’Clock 🍷👍🏼

[PMRpro Ambassador in reply to Soraya_PMR]

Though the like does NOT cover the "not a bean"...