Getting off Prednisone: I had PMR almost 2 years... - PMRGCAuk

PMRGCAuk

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Getting off Prednisone

England05
England05

I had PMR almost 2 years ago and was given Prednisone was amazing a life saver at the time. Given 20 mgs originally and went to 15 then 10 then finally 5 mgs. Cannot say was completely out of pain or stiffness but it was a doable. Then my doctor told me my numbers were good did not have PMR any more. My issue is getting off the steroids. I went down to 2mgs and supplemented with Advil seemed to work but have tried to come off of them completely and just use Advil but doesn't seem to work. Not sure what to do. My doctor told me that when you take steroids your body stops making it naturally. When does it go back to normal. Don't want to be on Advil forever or ache forever... Any suggestions

27 Replies
oldestnewest

I think the opinion of this site will be that pmr has not gone away. Most people rely on their symptoms to judge the level of inflammation, not the numbers on lab results. More wisdom will be coming from other members. Good luck

England05
England05 in reply to Bronni

thank you I am thinking you are right

Given what you say, what's likely is that your numbers were good because the pred was holding some of the inflammation in check, but not at a level that would make you "pain free".

It sounds more like PMR is not done with you yet, and that you need to return to treatment until it has burned itself out.

The average span for PMR is near 6 years, so while it's not impossible to go onto remission sooner, it is highly unusual.

If you have no success in convincing this doctor to return you to treatment, find another. If you indeed still have PMR, untreated inflammation is building into a flare every day you delay, and you'll be back where you started from.

England05
England05 in reply to GOOD_GRIEF

Really not what I wanted to hear but sounds like it hasn't gone two blurbs saying the same thing...I want PMR to be done with me as am done with it......thanks for the heads up

GOOD_GRIEF
GOOD_GRIEF in reply to England05

I hope to the heavens that I'm wrong, that whatever is giving you a hard time is both short lived and soon resolved. That would be great!

But I think it's unlikely.

And better to take a step or two back and nip this before it becomes a full-blown flare.

England05
England05 in reply to GOOD_GRIEF

I know I think learnt my lesson am going back to the prednisone Thank you for your advice and to everyone else.

This is such good advise, far better than what any doctor would give you AND given to you with Friendship from another person that knows what she is talking about!!, great

PMRpro
PMRproAmbassador

I fear your doctor has no idea at all how to manage PMR.

All that it means when the blood markers are "good" is that you are still taking enough pred to keep the inflammation under control. It does NOT mean that the underlying cause of the symptoms we call PMR has burned out and gone into remission. You have to reduce down to zero, very slowly and in small steps (not 5mg, not even 3mg at a time, 1/2mg at a time). and if and when you get to zero pred and the symptoms don;t return - THEN, and only then, can anyone say that you do not have PMR any more. PMR requires a median duration of management with pred of 5.9 years. That doesn't mean it lasts that long for everyone, it lasts at least 2 years or so, but less than a third of patients are off pred in under 2 years.

You were OK at 5mg? You are not OK at 2mg? So at present you need something between. And NOT Advil/ibuprofen. It has long term side effects that can be as bad as pred. And it doesn't manage the inflammation of PMR - pred does.

But to answer your other question - you need to taper from 5mg to zero at not more than 1mg per month, preferably less, and if you are lucky adrenal function will take up the difference and top up the pred dose to the amount the body needs to function. However, that is not a smooth process, it tends to be rather uneven at first and it is thought to take at least a year after stopping pred altogether for adrenal function to get back to "normal".

AliDeJ
AliDeJ in reply to PMRpro

Hello PMR Pro

Please could you post the link which says PMR takes an average of 5.9 years?

My Rheumy has stopped writing PMR at the top of my hospital letters. He repeated that it does not usually go on for more than 2 years. He says it's because I have GCA that I'm still in pain.

Thank you

Ali De J

PMRpro
PMRproAmbassador in reply to AliDeJ

practicalpainmanagement.com...

medpagetoday.org/rheumatolo...

are two links to articles about the paper - your GP should be able to access the paper itself.

And this is a link to a short video made at the ACR meeting where the work was presented:

rheumnow.com/video/dr-kathr...

In our experience, PMR lasts significantly longer than GCA which does seem to need pred for 3 or 4 years for most people.

Kaaswinkel
Kaaswinkel in reply to PMRpro

Wonderful advise, you people are great. Alida

thank you will go back to 3mgs and see how I am. Was not too bad but I think just want to come off of these pills Went from5 to 2 too fast...Have to take it slowly

PMRpro
PMRproAmbassador in reply to England05

Everyone does - but the truth is that if the PMR is still there, all that will happen is that the inflammation will build up until you are back where you started. It is a lot better to accept you need a low dose for longer than risk that happening and being back at the higher doses - especially since flares like that are often much harder to get under control again. And "not too bad" is not the criterion: if there is any left-over inflammation then it will build up sooner or later.

HeronNS
HeronNS in reply to England05

I know you won't want to hear this, I didn't when I had a flare about 18 months ago. Go up by 5 mg from your current dose. Let that dose get you feeling as good as you are likely to, probably better than you have for some time. Within a few days you can drop quite quickly down to a dose which will manage your pain - not where you are today, but a somewhat higher dose. It might be 3, but it might be a bit more. So this is what I find has worked for me: take the 5 mg extra for as many days as you need for the pain to be pretty much gone (not just "okay" but you feel mostly quite well) then drop by 1 mg every couple of days until you are just above where you flared, provided the pain doesn't come back sooner, and stay there for a while to make sure your pain really is under control. Others seem to be able to drop more quickly back down but I'm a bit scared to try that. In any event nipping things in the bud with a high enough dose will result in a lower total intake of pred than easing upwards over time. I have the t-shirt for this because I've used both methods. :D

England05
England05 in reply to HeronNS

thank you. I am able to function today so I think 4 has worked for me but will see. Not going to go back to the pain of last week...

HeronNS
HeronNS in reply to England05

That's good. See how things go for a few days. Four is a really low dose.

I agree with the other posters. It might be an idea to request a Synacthen Test for your Adrenal function. This may also be making you unwell and it is potentially dangerous. It is what your doctor is alluding to after all. If it is the case, you need to know about increasing your Prednisalone dose if you become acutely ill, are involved in an accident or experience significant stress. 2 years is awfully optimistic for the duration of PMR/GCA according to the Mayo Institute’s latest research, it’s more like 6 years average. It feels like Gaslighting to be told you are better, when you are clearly not. No doctor can tell for sure, symptoms rule. Not what anyone wants to hear though!

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

“...I want PMR to be done with me as am done with it.....”

Unfortunately it doesn’t work quite like that!

As others have said, your PMR is probably still quite active - so for pain relief you need to be on Pred. But no one can say what level exactly, but you have obviously gone well below the level that you actually need.

The idea is - after the initial high dose of Pred which clears out all the accumulated inflammation - you reduce SLOWLY to find the level you actually need on a day to day basis.

Your numbers may be good, but that doesn’t mean the PMR is gone - many people don’t have raised numbers! Symptoms are they key! If you have symptoms you still have PMR, and you are not taking enough Pred to control the inflammation caused by it. Some doctor don’t understand that it would seem.

You need to see a doctor who does understand it.

Yes your body does stop making cortisol once you’ve been on Pred for more than 3 weeks. Your adrenals glands normal produce anything between 5-10mg equivalent depending on you. So once you get to 10mg you really need to reduce as slowly as you can to give them chance to get going again.

This might help you understand your illness a bit more -

healthunlocked.com/pmrgcauk...

Thank you. I thought once numbers normal that was it. not that simple I guess. Thank you for your information I have just read it and learnt a few things things that I didn't know. I love this site. You ask a question and get an answer.. Not the answer I want though...lol

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to England05

Ahh - no we don’t guarantee the answer you want!😂🤣😂 but it’s usually the one you need.

England05
England05 in reply to DorsetLady

very true I am sad to say...lol

GOOD_GRIEF
GOOD_GRIEF in reply to England05

Well, I think a good analogy is that when you take aspiring to reduce a fever, that's not curing whatever is causing the fever. The aspirin is just treating the symptom, and the fever goes down. You'd think doctors know this stuff, but it seems they don't connect the dots any better than anyone else.

England05
England05 in reply to GOOD_GRIEF

You would think. I am in USD They kept sending me to ortho doctor and when that didn't work wasn't sure what to do. Got so bad had to go to the Emergency Room and they plugged in my blood work and out popped PMR...but not getting a lot of advice from Doctor so very happy to have this group

yogabonnie
yogabonnie in reply to England05

where in USA. wish you were in Minnesota. good docs here!

England05
England05 in reply to yogabonnie

I am in California...She is very nice but I have definitely received more information that I can actually use from this site.

Hi, I had PMR for 5 years and for the last 2 years I've been on 3mg p/day. My rheumy who's been very good did a Synacthen hormone test and it showed my adrenals seemed to be back in working order so took me of P/lone. I've tried coming off in the past with painful results but this time I am for the present feeling pretty good. Hopefully I can stay this way, fatigue apart, but I realise it may reoccur. This ailment is so perverse that I don't trust it but if anything adverse happens I'll be back on here like a flash. Good luck.

I went back to 4 mgs and feel good will do this for a while and then try to go down to 3 to see where my happy spot is..lol but I am going to ask for the Synacthen hormone test next time I go to see her

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