10 to 7.5 pred, what can l expect?

[Elbowpiece]

GCA. I dropped from 10 to 7.5mg pred. starting yesterday. Not long ago my legs and arms seemed to have had weights attached as they both seemed difficult to lift up, plus my feet cold, first time in ages. On an earlier incident during fatigue my pred jumped on a brown horse, John Wayne style and rode of at speed into Monument Valley. They don't make 'em like that anymore. If you can help with the first part much appreciated, l don't suppose anyone is in Monument Valley to see if the pred is there.

[jinasc]

Too big a drop no more than 10% at a time, go back to your 10mg and wait a few day, preferably a week. In the meantime under TOPICS take a look at one of the tapering plans and choose which you would like to try.

If you come down too quickly the inflammation will build up and then back you go and that starts you yo-yoing.............the slower the better. The tortoise won the race.

[PMRpro Ambassador]

Once you get to 10mg at the latest you need to cut the size of the reduction - shouldn't really be more than 10% ever but from 10 it gets more critical, About this sort of level your adrenal function will have to wake up and start to produce some cortisol to make up for the pred you have cut - and that can have all sorts of effects. Your reduction was 25% - a relatively big change and your body notices and protests, Most people manage 1mg, especially if they use one of the slowed tapers we bang on about here but some have to go to 1/2mg at a time.

[LBM1953 in reply to PMRpro]

Hi All. I am now tapering from 30 mg and down to 25 mg (coming down in 2.5 mg drops every two weeks, so far so good). The intention is to keep this going until I get to 15 mg then agree with my GP to adopt one of the Plans as developed by you guys). Not sure where I got this but this link has several Plans developed by (seemingly) lots of wise people but they all have significant single stage reductions (over 10%). Can this be correct? Regards. LBM1953.

steroidtaper.azurewebsites....

[PMRpro Ambassador in reply to LBM1953]

They were developed as part of a project - and don't necessarily reflect the experiences of real patients. The ones with the patient-input start towards the bottom of the list. Dr Quick and Prof Kirwan's approach is notably slower than the BSR ones - and the rest from Dead Slow and Stop on are all patient-influenced. According to Quick and Kirwan, the BSR-informed ones result in a 3 in 5 flare rate, theirs reduces the flares to 1 in 5. Ours should result in no real flares if you pay attention as we recommend. No reduction to a slightly too low dose should result in a flare setting in as you would immediately abort that reduction step and return to the previous dose that was enough.

[LBM1953 in reply to PMRpro]

👍👍👍

[MrsNails]

Hi as jinasc says we really shouldn’t drop by more than 10% so that’s 10mg->9mg and from there in, it’s best to try going down by 0.5mg drops.It may seem slow but not if it works.

Good Luck 🍀

MrsN

[DorsetLady PMRGCAuk volunteer]

As jinasc says - too big a reduction - guidelines recommend below 10mg - as follows - 1mg every 4-8 weeks -

**However, there is no consistent evidence for an ideal steroid regimen suitable for all patients.

Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course.

Some benefit from a more gradual steroid taper.

Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.

* note the comments - these are just guidelines, not everybody is able to conform.

With my GCA, did 1mg steps down to 6mg then switched to 0.5mg each time,

Bigger reductions on higher GCA doses are relatively easy, because you have a surfeit if the medication in body - once you get to single figures there is a very fine line between just enough and definitely not enough Pred.

…and nope, nowhere near Monument Valley 😳

[piglette]

Were you told by your doctor to reduce by such a large amount under 10mg? It really is not recommended. I hope things go OK.

[Elbowpiece in reply to piglette]

It was my rheumy, l did say "l think that might be to much" but he said no. Nurse said similar. I'm type 2 diabetic would that have any bearing why he wants it down quicker. My diabetic nurse says steroids play havoc with diabetes.

[PMRpro Ambassador in reply to Elbowpiece]

How well controlled are you? Bit late to be concerned about that - it will have been worse at higher doses and there is more than one way to skin a cat ...

[piglette in reply to Elbowpiece]

Your rheumatologist is not the one with PMR being asked to reduce by 25%!

[ChinaWuntoo in reply to Elbowpiece]

Elbowpiece: you must have the same rheumatologist as me! I refused and when he saw I was serious and following the DSNS regimen he didn't want to have anything more to do with me. YIPPEE.

[HeronNS]

You may be able to manage a 2 mg drop in a month by trying this: Look up the dead slow nearly stop method (it's in our FAQ pinned post under Tapering Plans). Use 10 as your old dose and 9 as your new dose. Halfway through the taper make 9 your old dose and 8 your new dose (only do this if you are still feeling fine). I used to do this by repeating the step where you are one day old dose one day new dose, by making the change at the repeat, then carrying on the taper as outlined. If it works, by the end of the taper you will be on 8 mg, not 7.5, but that seems pretty good to me. Especially, if it works, you should be able to start the next taper right away. You will also be at the level where we suggest half mg steps are highly recommended.

Actually, here is the actual post:

healthunlocked.com/pmrgcauk...

[Louisa1840]

Hi Elbow Piece. This is just to say everyone above has said it all but I LOVE your sense of humour! If we can keep laughing we will survive....!!!!

[MrsNails in reply to Louisa1840]

Hi LouisaHow are you?

MrsN 🌸

[Louisa1840 in reply to MrsNails]

Hi Mrs N!

I think the answer is "As well as can be expected"! Apart from faitigue which I've learned to live with and stiffness (ditto) I am okay. I'm on six and a half trying to taper to six but fnding it difficult. My brother, in North Wales (I live in Tasmania) is down to 2 mgs. Yes, I know it's not a race!

Without the friendship and support of this lovely group the PMR journey would have been much tougher though having a brother with PMR too has helped.

I think I've been reading that you've had some challenges lately too ? Sometimes there are so many replies to a post that I think mine might be de trop! So I don't often post or reply unless few others have.

[Jackoh]

As you’ve said you are type 2 diabetic have you tried really limiting your carbs? Many of us on here have done this and personally that for me really improved my diabetic status. X💐

[Noosat]

Such a big drop !!!!!!!!!!!

[2013mayo]

Hi. Oh boy I know the feeling, I’ve been there.

Every time I cut down the pred at speed I was in trouble.

Listen to these lovely people on this site, they will put you right.

Slow slow slow with the pred.

Xx

[Boss302Fan]

A Flare!

[GrannyJane]

Hi Elbowpiece,Everyone has said the same wise advice, slowly slowly catchy monkey!

I am currently on 10mg for August then will try 9mg in September, after that it will be 1/2 mg a month.

I’m in no rush, on pre-diabetic course so hope to avoid diabetes.

We have to carpe deum and make the best of where we are at, no matter how the professionals want to hurry us off steroids, it’s our body and we have the right to make our own decisions.

Where’s Monument Valley?

[Elbowpiece in reply to GrannyJane]

Monument Valley is in Utah, Arizona border and lots of filming has taken place there, including Stagecoach with John Wayne, Easy Rider, and it's where Forrest Gump stopped his run and turned round. He couldn't find the pred either that's why he gave up.