5 mg

[Hageman]

Well manged to get down to 3 mg pred.... then it started with bit pain here and there.... back up to 5 mg seems to be ok at moment ....

Wounder if this will be a forever 5mg hope all you pepoles out there are safe and well

[PMRpro Ambassador]

If I were to get to 5mg I'd take it and run Just a distant dream ...

[pal-o-mine in reply to PMRpro]

I have to admire you PMRpro. You have risen above everything that's been thrown at you and you still find the time to respond to people's concerns, despite your own problems. That takes a special kind of person to do that. I'm looking forward to the day when you say you're off Pred. for good and I'm praying you stay safe in the meantime 🙏🏻💗

[PMRpro Ambassador in reply to pal-o-mine]

I don't even think of it now -it is so unlikely to happen. Just to add - one very good PMR rheumy likes to keep people on 5mg for anything up to 9 months. It lets the body catch up, it is just low enough to very gently poke adrenal function, and then the rest of the journey is often easier - not saying quicker mind! I think a lot of protracted periods of pred are the result of trying to hurry the process along. It just doesn't work unless you are one of the small number for whom PMR is a 2 year journey - there really are some, I know several, but they are rare.

[Longtimer in reply to PMRpro]

I suppose that may be why my cortisol numbers have risen...have been at 7 mg for about 6 months.....won't try lowering till January..can't say I feel too good!.....but in no hurry have waited this long!...

Still going to have that party at 4 mg!.....

[DorsetLady PMRGCAuk volunteer]

Not necessarily…..but don’t be in any rush….most people would be quite happy to be at that level after only 2 years.

Despite what it written about PMR it can, and does, last a lot longer than that -and any dose below 5mg is doing a lot more good than harm.

If you’re in the northern hemisphere with winter upon us certainly don’t be in any hurry to reduce- but when you do maybe use a slower taper and only 0.5mg a time rather than 1mg.

One version of slow taper - healthunlocked.com/pmrgcauk...

[Bcol]

It's cold, damp and miserable, which doesn't help. I know it seems disappointing to go back up, even a little bit, but 5mg is a good achievement in two years and not a problem. Get rid of the symptoms and see how things are after Christmas and the New Year shenanigans.

[laidbackreader]

Every time I have got below 5mg in the past, my vasculitis has flared. Medics decided to keep me on 5mg maintenance dose.

[arvine in reply to laidbackreader]

can I ask you what symptons you experience, when you say your vasculitis flares please?

[laidbackreader in reply to arvine]

I have EGPA which affects my lungs. For me a flare begins with a cough, joint pains and a general feeling of being unwell.

[PMRnewbie2017]

It's taken me a year to get to 3.5mg from 4.5mg and feel stable enough to consider another reduction. Don't rush, after only 2 years you're doing well to be on 5mg.

[Pixix]

After two years I’m in the same position! I had dreadful problems at 3mg & stuck it for 3 weeks…then ended up phoning the doctor…he sent me back to 5mg, and said some of his patients find they need to stay at 5mg for a long time! After a month, I am now alternating days of 4mg and 5mg, & finding that quite acceptable. I think I will get there, just not as quickly as I was determined to do! I’m still ‘pushing the boat out’ and overdoing it on a daily basis, so I can’t expect too much!! Good luck, you’re not alone! Oh, & my Doctor listened carefully to my symptoms & said they weren’t adrenal glands issues.

[DorsetLady PMRGCAuk volunteer in reply to Pixix]

You may find alternating 4.5/5mg easier on body , or better still a slow taper -

healthunlocked.com/pmrgcauk...

[Pixix in reply to DorsetLady]

Thanks, DL! Mrs Nails also recommended that to me at the time, but I was fine on 4mg for two months before & I think I went too quickly to 3, without thought & a slow taper…so I wanted to try this, just as far as 4mg, and it’s working…fingers crossed! But I have the pill splitter ready, & I’m sure that from 4mg to zero will be by the slow taper method. Thanks for your help, S x

[PMRpro Ambassador in reply to Pixix]

Bear in mind 4 to 3 is a 25% reduction - hardly the 10% the top experts recommend!!!

[Pixix in reply to PMRpro]

Absolutely, but it was worth a try! You never know!! I’m the eternal optimist, & had enough of pred! I was battling winter long chest infections with it 4 years & swore I’d never take it again…my first question to Dr…is there any thing else I can take instead…anything will do!! Hope you’re getting onOK as poss, S xx

[Loyd]

Same happened for me -got down to 3 and a half and all the shoulder and arm pain returned - the doctor has put me up to 7mg a few days ago - not helping much but just don’t want to go up any more!

[PMRpro Ambassador in reply to Loyd]

You might not WANT to - but IF it is a flare because you overshot, then going to 8.5mg for a week and then dropping back to 5mg might well work a lot better and quicker.

[Loyd in reply to PMRpro]

Thank you for that PMRpro. Could you drop right back to 5mg from 8and a half if it got rid of the pain? If I get down to 5 again I think I’ll stay there for at least a year this time. That’s twice now I’ve had a bad flair at around 4mg.

[PMRpro Ambassador in reply to Loyd]

Yes, providing you weren't at the higher dose for more than 7-10 days there is no real need to taper - and also provided the flare was due to overshooting the dose you need, If it were an increase in disease activity that caused the flare that would be different. However - if you are repeatedly flaring at the same sort of dose, that is your body telling you you have arrived at the destination for now: the lowest effective dose. You are never reducing relentlessly to zero - you are titrating the dose to find the right dose for you and your PMR. No-one can tell you in advance what that is, there are too many variables. And that is why rigid pre-determined reduction plans so often fail miserably.

[Loyd in reply to PMRpro]

Thank you so much! That is so helpful. I had a gut feeling in the first place I should have gone straight to 10mg for a week then right back to 5mg. I’ll try 8mg and pray! Thank you.

[DorsetLady PMRGCAuk volunteer in reply to Loyd]

Follow your gut feeling…it’s usually correct! 😉

[Loyd in reply to DorsetLady]

Many thanks Dorset Lady - I’m going to do that now.

[Hidden]

At rheumatologist appt two weeks ago, she was pleased I’ve gotten to 6 mg and when we discussed next steps, she said I can slowly try for 5 mg and then stop there for good. When I questioned this, she reiterated, I should permanently stay there. She doesn’t think adrenals will ever recover (?). With all the other health issues plus age, I’m inclined to accept this. The thought of adding more to my plate with a flare fills me with dread. Since we’re all different you have to consider what is best for you individually. Just sharing where another PMR friend is at the moment. My best to you. Ann

[Loyd in reply to Hidden]

I’m thinking 5mg is going to be good for me too. Can’t contemplate another flair. Wishing you the best. X

[Noosat]

I got down to 2.5 then had to go up again to 5mg. Have now, after several months worked my way down to 4mg. so far so good. I will stay here for another month then try to go down to 3.5mg. Good Luck

[Ronnie101]

Just to add to the collective experience, after a number of times trying to get below 5 using the slow methods, I've finally made it, with some stability, to 4.5. I think I might try 1/4 mg drops from here...

[Zareda]

After two years, I’ve made it to 1 1/2mg of prednisone. It’s doable, but I’m much more comfortable at 3 or 4mg. I unfortunately have a rheumy that is pushing for zero. Good luck with your tapering. Slow is best.

[DorsetLady PMRGCAuk volunteer in reply to Zareda]

I really don’t understand some Rheumies- if you feel good at 3 or 4mg (where there is little or nothing in side effects line) - why not let you reduce in your own time.

All they are doing by pushing you to zero is to cause your illness to flare - and then you end up taking more Pred - exactly the opposite of what they are trying to achieve!

Not exactly rocket science is it?

[Zareda in reply to DorsetLady]

No it’s not rocket science and I agree with you 100%. I see no harm in staying at 3 or 4mg with zero side effects as opposed to starting another med that has multiple side effects. The downside is that I have to rely on him for refills so we butt heads often.

[Jassarwal]

Same here. Was so pleased to get down to 3mg after 4 years reducing from 60mg. GCA headache came on with vengance went back to 5mg so another slow reducing started today. Good luck with your reducing.