How to reduce pred?: Hi I was diagnosed with PMR... - PMRGCAuk

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How to reduce pred?

helenorpington profile image
helenorpington

Hi

I was diagnosed with PMR on the 10 of May and had 4 weeks of 15 mg pred a day. Now my doctor wants me to reduce to 12.5 mg but says that I should take 15 mg and 10 mg on alternate days. Does it sound right to you? I have read so many posts on this forum saying you should reduce very slowly and am anxious to go from 15mg to 10mg even if it's on alternate days.

61 Replies

I was never able to do that alternating business without some payback from my body that didn’t like the swings. Some docs do seem to like this but I guess they are not the ones living it and I’ve never been able to ascertain when the body is supposed to decide it doesn’t want the 15mg any more but would rather the 12.5mg instead when it is changing every other day. I preferred a smaller drop to smooth out the staircase so you can still keep to their schedule but do it in smaller dose steps. The rule of thumb is no more than 10% each time

Thank you so much for your reply. My gut instinct was to reduce as well to 12.5 mg on everyday. I only have 5mg tablets but I guess I can cut them.

Not everyone can cope with that big a step but if you can’t do smaller drops like 1mg, go for piglette’s method.

Thank you.

Get a good pill cutter. Also ask for 1 mg tablets. I have crept down to 5mg and tried to get down to 4.75 after 2 months on 5mg (cutting the 1 mg into 4!) . My PMR began to scream at me. Back on 5 and all is hunky dory. Tiny, tiny reductions have worked better for me than the variable dose I have learnt from the wise folks on her...slowly, slowly.

Was also on a reducing dose from 15mg, but have found that lower than 5mg and aches and pains return, so have decided to stay on 5mg for the time being.

How are your adrenals doing? I think after many months on 5mg they are beginning to wake up...I mean I don't have collapsing fatigue as much. There is rheumie who keeps his patients on 5mg for a year and has found they don't get so many flares subsequently.

You can get 2.5mg tablets which split well into 1.25mg which you may find helpful....

You can cut them, I certainly can see that your body wouldn't like an alternate day drop to 10mg,my husband newly diagnosed was reduced to 12.5 from 15mg after two weeks, and a week later he has started to het pain in his shoulder in the morning, so your doctors methodology wouldn't have worked for him.

You can ask for 2.5 and 1 mg. I started in March and GP took me down to 12.5 and it all came back. I now tell the G P what I am going to do. Now reducing by 1mg every three weeks, plus taking the now 13mg at 3 am and feel so much better. Going to take a long time to reduce but better than it coming back and having to take 15mg again

ljs48 profile image
ljs48 in reply to helenorpington

You can get them in 1mg and 2 1/2 mg, I am at 10 and my doc has me reducing 1 mg a month plus I am taking methotrexate once weekly to reduce the side effects.

You can get 2.5 mg , request them from your Doctor. I had 2.5mg when tapering from 15 to 12.5mg and again from 10 to 7.5mg . Is this your GP or Rheumatologist ? I was told by my Rheumatologist not to cut the tablets .

I started on 4 weeks 15mg then down to 12.5mg for 4 weeks & have just gone down to 10mg. It is now my 4th day at 10mg & it was hard for the first 3 days but better today. So I wish good luck with going down to 12.5mg.

Yup, if it works for you it’s fine. I always got withdrawal from day 1-4 for a few days. Good luck!

Have you only got 5mg tablets? If you can get 2.5mg tablets I would alternate between 12.5mg and 15mg ie

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

Thank you Piglette. Have you tried this approach?

Yes, it works well for me and I think quite a lot of people use that method.

PMRpro profile image
PMRproAmbassador in reply to helenorpington

It's what we call the Dead Slow and Nearly Stop taper - it's been trialed in a clinical study in Leeds too so rheumy-approved.

Doraflora profile image
Doraflora in reply to piglette

I’ve just realised I’ve been doing your tapering wrong, piglette. I’ve been doing the tapering down (all fine) but then stayed on the new dose and done away with the old dose.

I feel fine so I guess it’s ok for me.

piglette profile image
piglette in reply to Doraflora

I find that often happens with me too. I feel if it is OK I don’t worry.

PMRpro profile image
PMRproAmbassador

The primary problem with trying that approach is that you are not just reducing relentlessly to zero so that the quickest way is appropriate. This is meant to be a titration - an adjustment of the dose to find the lowest effective dose for this particular patient. Usually it is done from a low to a higher dose but that doesn't work here and you start at a dose that is high enough to work well, clear out the existing built-up inflammation and then you can reduce the dose - slowly - to identify what the patient requires. In the early days of PMR this tends to be markedly higher than later in the course of the disease.

Several of us on the forum were messed about in the early stages - and have subsequently have had problems being able to reduce. Sometimes the fast approach ends up with the patient taking more pred and having more problems than if they had gone more slowly.

If you are on plain white pred - what on earth is wrong with cutting 5mg tablets if the doctor is too mean to prescribe 1mg tablets?

Thank you. Does 12.5 mg everyday seems more sensible to you?

PMRpro profile image
PMRproAmbassador in reply to helenorpington

It does - and even start by a week alternating 15 and 12.5 before going to every day 12.5mg

Thank you, I will try this.

I agree with the others that alternating 5 and 10 is too big a difference and will lead to trouble. PMR is not like most other illnesses treated with pred and requires a stable administration of pred from one day to the next.

A rule of thumb is to taper by no more than 10% of the dose at each step. A taper of 2.5 mg is a lot more than 10% of 15 mg, although markedly better than a 5 mg step. The slower the better.

I like to tell people how I managed, because I've never seen anyone else mention it, although this is what my doctor told me to do. After my month at 15 where all my aches and pains were vanquished she told me to taper by 1 mg a week. This worked until I got to 9 mg, when I had to return to 10 for a couple of weeks owing to slight return of symptoms. After that I used the dead slow method and had reached 3 mg by the end of the first year with no problems, although I tapered gradually slower and in smaller steps the lower I got. It took another year to get to 1.5 mg, and really since then I've learned that 2 mg is apparently my lowest best dose.

But the point is that by dropping 1 mg at a time from my highest very effective dose I was down to 10 mg in 5 weeks, and really no doctor could complain about that.

Janesams profile image
Janesams in reply to HeronNS

Similar to my experience. I tapered .25/week starting at 15. I crashed at 12, crashed at 10, crashed at 8, where I am now. For me the question has been do I go back up a lot and feel better and then have to do it again, or go up til I feel stable and start back down. The second option was best for me. I wish you well. I am determined to get to a maintenance dose of 5mg and avoid the crashes. They are very hard on my body and seem connected to tapering too fast or big swings in dosage. Good luck!!

HeronNS profile image
HeronNS in reply to Janesams

Who did you mean to reply to? Not me as my experience was definitely not like yours. So sorry you have had such a difficult time.

Thank you, it looks like a very sensible and easy way to reduce the pred.

I have cut 5 mgm tablets into 4 x 1.25mgm in the past, not brilliant but I needed a smaller dose. The tortoise definitely wins the race here. At the moment I’m taking 6-7 weeks to reduce by 1 mgm using the dsns method. So far so good though I’m slower than what the gp wants. She’s too busy to notice anyway so it’s working well 🤫

Edited to say you really need 1 mgm tablets at some point.

My Dr. seems to be fine giving me several Rx for different dosing. I have 1mg 2.5mg and 5mg. He also put me on Hydroxycloriquin. Has anyone else been given this for there PMR. I haven't seen it mentioned.

Janesams profile image
Janesams in reply to Cyclone69

Would learn to hear more about Hydroxy.

HeronNS profile image
HeronNS in reply to Cyclone69

I think it is used in lupus, which is one reason why there was so much concern when it was being touted (incorrectly) as a covid cure because they were very worried about supplies for people who really needed it. It is called Plaquenil and I have heard it mentioned quite frequently, although I have no experience of it myself.

HeronNS profile image
HeronNS in reply to Cyclone69

I just did some searching and there are links to a few conversations about plaquenil on this page, as a start:

healthunlocked.com/pmrgcauk...

LThomas profile image
LThomas in reply to Cyclone69

Yes, my doc has put me on hydroxycloriquin as well, it's been about 6 weeks. I'm on 7mg of prednisone and in a couple of weeks going to start the taper to try and get to 6mg.

Hosers2 profile image
Hosers2 in reply to Cyclone69

I was down to 7mg Prednisone but developed Macular Degeneration in one eye. The ophthalmologist suggested I get off steroids as soon as possible, so my Rheumatologist put me on Hydroxychloroquine (400mg) along with a Folic Acid tablet, and I began reducing my Pred by 1mg every 5-7 days. This happened in January and I have successfully been off of Prednisone now since mid-March. My one year anniversary of contracting PMR is coming up on Fathers Day.

Other note: I also take Methotrexate (10mg) once a week. I’m not happy about that because I have read about the serious side effects of Methotrexate. So I have begun reducing and am now at 5mg once a week.

But. . . .I have no idea yet if I will eventually eliminate Hydroxychloroquine from the twice daily routine. It is keeping my PMR under control.

Linda20 profile image
Linda20 in reply to Cyclone69

I was prescribed Hydroxycloriquin by my Rheumy about 8 months into my PMR diagnosis. It gave me no relief and was stopped after 3 months. He said he had some patients with good results, and a few like me with no positive result.

I've done the slow decline, not the back and forth. I started tapering six months ago. Was at 15, now at 8, but really hard. Reducing .25 a week. Sometimes have withdrawal sx. Be patient with whatever you try. It's a hard grind but I feel more sane now at 8 than I did at 15. Good luck!

Yes, I'm finding it quite hard on 8. Feeling dizzy, nauseous off and on. This is end of first week and will try another week on 8. Have been reducing 1 mg a week from 10. ( Initially was on 25mg in January and made good progress for large drops in dosage a week at a time until I got to 10. )

PMRpro profile image
PMRproAmbassador in reply to Humphreydonk

From 10mg you need to slow down - 1mg steps, yes, but 1mg per MONTH. REductions faster than that are predictive of flares/relapse.

Humphreydonk profile image
Humphreydonk in reply to PMRpro

Many thanks for this. I have a telephone appt with my GP on 14th June. Last time I spoke to him I was on 10 and advised me to increase tapering intervals to 2 weeks so I will tell him I'm going to make that 4 weeks !

PMRpro profile image
PMRproAmbassador in reply to Humphreydonk

You are bound to be getting closer to the dose you want and 1mg can make a big difference. You need tostay at the new dose a bit to be sure it is still enough - when you go too fast by the time the inflammation has built up you haven't a clue where it went pear-shaped!

I take my Pred every other day because my side effects were so bad.My body tolerates ok but I am still reducing slowly.I was on a lot higher dose than you.

I have been on pred for exactly a year. I started on 30 mg and very quickly came down to 15 mg. But I did it gradually. I try to taper very slowly now and just by 1/2 mg. At present, I seem to be doing well on 6 1/2 but I shall stay on that dose for a while before coming further down

When I started four years ago my rheumy prescribed 15mg then 12.5 so told me to cut tablets. Did that with no problem then down to 10. At 10 she gave me 1mg tabs and suggested the 1mg drop. Hiccup at 10 then discovered this site. So good. Dropped by 1/2 from then on to get to 6 1/2mg after a year. Still on 6mg after six more months. Best wishes with your journey.

Took me years to finally kick the Pred, now on methotrexate and RoAtema injections......reducing the methotrexate, hard on the liver. the final stage of red. was 5 down to 0, and it was tough, but I was on it for about 5 years, so needed to kiss it goodbye.If I have a sudden flare I take some, but haven't done it recently.....

My GP had me start on 15mg for a week (in early March), alternating days 15 and 10 for a week (I extended this to 10 days) and then 10mg for a month. It worked fine for me. I am now on 8mg a day. I tried to get to 7.5mg by alternating 8 and 7.5 for a week (which was OK) and then a week on 7.5 (last week) but although I didn't have any flare of muscle pain I did have more fatigue and general malaise so yesterday I took 8.5mg and was able to do a 2 mile walk. Now I am back on 8mg a day and will have another go at reducing to 7.5mg more slowly in 2 or three weeks time. I'm thinking DSNS from now on.

Hello Helen, Coming of Prednisolone can be a long old road. I was diagnosed with Polymyalgia in August 2014 when I was 64 and was on 15-20mg per day back then. I have been on 20mg of Methotraxate per week for about 3 years now and after a couple of failures at reducing my Preds, I am now down to no Preds every third day. So in answer to your question when I got down to 1mg per day, as they don’t make 1/2mg Prednisolone tablets the only reducing dosage I could take was 1mg every other day and my next change will be take 1mg every other day. So far so good!

If I have a flare-up I increase my dose for one day only and "wack myself up" with Ibuprofen and Paracetemol. As my doctor said to me, after living with it for so long you get to know how your body is reacting. Good luck

PMRpro profile image
PMRproAmbassador in reply to Geodesic

Are you on enteric coated pred? It is fine to cut plain white pred - and most chemists sell pill cutters

Thank you so much everybody for sharing your experiences. It's still early days for me and very comforting to know there is a whole community there who went through this.

PMRpro profile image
PMRproAmbassador in reply to helenorpington

Just a tip - if you want everone to see a response from you, reply to yourself rather than one person on the forum as that isn't always notified to everyone on the thread.

Thanks for the tip!

Hosers2 profile image
Hosers2 in reply to Geodesic

I thought I read somewhere that taking Ibuprofen with Methotrexate was not recommended. Something about it affecting the Methotrexate adversely. You may want to check for compatibility of the two.

PMRpro profile image
PMRproAmbassador in reply to Hosers2

drugs.com/drug-interactions...

Though mixing ibuprofen with pred is not recommended either!

! was originally on 15 mg pred, told take methotrexate 25 mg 1 day a week, reducing pred by 1 mg a fortnight, I am now on 3 mg. of pred a day, but now take 1 injection of methotrexate a week, At this moment i feel fairly good, joint pains are reduced, other symptoms i think are other ongoing health issues.

PMRpro profile image
PMRproAmbassador in reply to bikesanddogs1

Joint pain per se is unusual in PMR

I was able to drop 20mg down to 15. But then former rheumy told me to drop 15 down to 10 in one go. Didn’t work!! Flared and had to go back up to 15 for 4 more weeks. Listen to these fine folks…lots of wisdom shared. All the best.

Thank you everyone for your useful tips. I am going to go to the pharmacy tomorrow to try to change my 5mg to 1mg tablets....Few of you mention Methotrexate, what is for?

PMRpro profile image
PMRproAmbassador in reply to helenorpington

Some doctors believe that using methotrexate alongside pred enables patients to manage in a lower dose of pred which, they say, reduces the side effects. It has its own layer of adverse effects and doesn't work in many patients or only allows them to reduce by a couple of mg.

Funding is being applied for so a study can be done to assess how effective it is - but the results are unlikely to be available before 2027 so don;t hold your breath!

Thank you PMR pro for your feedback and always sound advices :)

I'd say SLOW SLOW SLOW especially when you get to the much lower doses - I've had PMR for around 9 years - initially I did a lot of over fast attempts to get down and off pred altogether - It always led to debilitating flare ups and then back to square one at 15mg. Finally learnt the hard way and reduced by 1/2 mg for a month and sometimes longer.Final [I hope!] best dose is 3.5 mg - going lower I can feel the pain coming back so

I'm sitting with this and maybe in the future another shot at 3mg, but for me rapid reductions especially after 7mg was no go.

Good luck !

If you are taking alternating doses of pred, why use a pill cutter? Just snap the 5 mg tablet by hand putting the larger pieces in one container, the smaller in another. 🙂

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