Weary and confused

[JsyAnne]

GP told me Latest blood tests good and I should reduce my dosage of steroids. My GP is good but I feel he's a bit too desperate to get me off the steroids. He said as tests negative I should reduce dosage from 15mgs to 10mgs but after a few days on lower dosage I feel really rough and very low. Have decided to up my dosage tomorrow but as only have 5mg pills wonder if I should ask him for prescription for lower dosage to make it easier to try and get the right balance.Any advice would be appreciated

[Hidden]

Hi JsyAnne,

An easier option is to go to 12.5mg from 15mg, when he says your tests are negative, did he give you the actual results ie the Numbers?

If you have uncoated Pred (ie white tablets) you can cut them in half but ask GP for some 2.5mg & 1mg to assist with reducing & so you can go more slowly.

Kind Regards

MrsN

[JsyAnne in reply to Hidden]

Thanks, that's really helpful

[Hidden in reply to JsyAnne]

The standard reduction is by no more than 10% so ideally from 15mg it should be by 1.5mg taking you to 13.5mg but some people can manage the 15mg>12.5mg

Good Luck 🍀

[Blearyeyed in reply to Hidden]

Totally agree Mrs N , and take a few weeks on the 12.5 so you have time to see how you feel on the new dose and rebalance before going down to 10 mg.

[Koalajane]

You should speak to your doctor again and ask for 1 mg pills. My doctor did the same, reduced me from 15mg to 10mg and I struggled and stayed on 10mg for quite a while. Symptoms are more important than blood results

[JsyAnne in reply to Koalajane]

Thanks.

[DorsetLady PMRGCAuk volunteer]

I would go back up to 15mg for a week, and then as others have suggested request 1mg tablets and do a much slower taper.

Although 15-12.5-10mg is recognised taper not everybody can achieve that, so a 1mg or 1.5mg would probably be better for you.

Certainly a 15mg to 10mg is a definite no-no!

[HeronNS]

Just for an example my (sensible) doctor told me to reduce by 1 mg after 5 weeks at 15. She did tell me to do this every week, and to stop tapering if symptoms returned. I was fine until I got to 9, went back to 10 for a couple of weeks, and then I used the dead slow nearly stop taper. I was at 3 mg at the end of the first year on pred. (You can tell your doctor that, but you probably shouldn't add that it took me another year to get to 1,5 and am still on pred four years since starting!)

[Meggsy in reply to HeronNS]

Hello Heron,

When you did the DSNS taper did you decrease by 1/2 or 1 mg each time? I am presently on 7mg and will do DSNS from now on and not sure which way to go. I have had a reasonably good run so far with the only glitch at 10mg, which took three attempts to get past. Diagnosed Feb. 2018 - 25mg as 15 didn’t quite do the job.

Thank you for your very helpful contributions to this forum. Marea 🌻

[HeronNS in reply to Meggsy]

I started decreasing by .5 mg when I was at 7 mg, I think. It might have been after I was at 8 (been a while now!). Before that it had been 1 mg at a time. I never tapered by more than that. That being said, everyone is different and what worked for me may not work for another. I just put it forward as an example which has worked for one individual (myself). I do think all of us manage better with the slowest taper possible once we get to really low levels. I've even read of people who managed to cut their pills into quarters and taper by .25 at a time, and, who knows, maybe I'll be trying that if I get to the stage where I'm trying to taper down from 1 mg....

[Meggsy in reply to HeronNS]

Thanks Heron 🌹

[HamishPMR]

Bloody GPs, they should read the blogs on this HealthUnlocked PMR site!

[prunus]

You don't say whether you are PMR or GCA. When I was on 15mg with GCA my consultant had me reducing by 2.5mg and then staying at least a month there.

[PMRpro Ambassador]

If your GP cavils - point out that reducing in smaller steps without struggling and possibly having to go back to the starting dose is much better and, in the longer term, probably exposes you to less pred.

And you aren't REDUCING to zero, you are tapering, titrating the dose to find the lowest dose that gives the same result as that starting dose did. Of course your blood markers are good - you are on more than enough pred to manage the inflammation. It is what they do AFTER a reduction that is important - not where they are before.

[JsyAnne in reply to PMRpro]

Thank you.

[11541stella]

Hi JsyAnne

I'd say a 5 mg drop is way too ambitious. If your blood readings were fine at 15 that may only mean that 15 mg adequately controls your symptoms. It's true that the only way to find out what level of inflammation you have is to keep reducing until you find the amount that suits you, but I've found it's much better to creep and go, than to yoyo up and down - and risk triggering flare-ups.

In the early months I went along with my GPs plan, then put my foot down after getting her to acknowledge that the level of inflammation is outside my control. Since then I've reduced by no more than 0.5 mg every 5 weeks, staying put at times of stress or other illness, and it's been progressively in the right direction. We're all individual in how we react to the steroids, how well we tolerate reductions, etc - I wish the medics would remember that when they read the studies and guidelines!

Good luck!

[Noosat]

There is good advice by the pros. I have been down to 4mg from 4.5mg for 4 days. I have had some discomfit, but am OK. I have learnt that with every decrease, no matter how small, discomfit will happen. I try not to think about it and it seems to decrease. I am feeling better this morning than I did on the first morning. I tell myself my body, adrenal glands, just have to get used to the power dose. Good Luck.

[Rugger]

When I was diagnosed in May 2016. I started on 15mg, then reduced to 13mg, 12mg and11mg, reaching 10mg 19 weeks later. After that I tapered at 1mg / month and have still had 'flares' along the way. I'm tapering to 5mg now, at 0.5mg / month, using the DSNS taper, which you'll find on here.

The Pharmacy should sell you a pill cutter, but also ask your doctor for 1mg tablets.

Good luck.

[Jocelyn344]

Agree with others advising a slower tapering dose.mwe are all different.

Good luck

[bonnielm1]

You need to go slow. Then when you get even lower I think you need to even slow down more. I finally had to have the help with methotrexate. The lower prednisone for me was not the answer. I always thought that coming down more that 1mg was too much. And when I got lower (under 5mg) I needed to come down 1/2mg at a time. I think prednisone is a good medicine for short term problems. But then the side effects get bad. Skin and bone problems, weight gain, mood swings, and I had to have cataract surgery.