Still on Prednisone after almost 3 years will I e... - PMRGCAuk

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Still on Prednisone after almost 3 years will I ever be off it

Roxyart
Roxyart

Hi I joined this group and it's giving me a lot of information over the last two-plus years I was diagnosed with PMR and GCA I believe I started at 30 mg of prednisone and yes it was a godsend but it took months to get back to where I can move around freely now I'm down to 4 mg of prednisone and I've tried to lower it and get off it they're always seems to cause a flare and I have to increase it again I thought that this would go away but from reading these post it looks like that isn't going to happen my general practitioner treats me he's never done a bone scan or put me on calcium or vitamin D I've done the vitamin D myself so do I understand it this disease never goes away ? will I always be on prednisone?

61 Replies
oldestnewest

Patience Roxyart! Difficult though it is for us all to hear the average time for PMR to burn out is 5.9 years, so you may have some time to go yet unfortunately. And for most, but not all, it does go away.

I have had it for nearly five years and recently found 5.5mg isn’t enough so just gone back up to 6 mg. I am so grateful for pred as it has given me my life back (albeit a slightly different one)

I, like you am treated by my GP who seems to know very little, but isn’t bothered what I do re dosage, so I follow the advice on this forum.

tangocharlie
tangocharlie in reply to Mary63

Your words echo the advice given to me 5 years ago in my first ever post when I had been on Pred for 3 years and couldn't get below 5. If I had known then what I know now I'd have just stayed on 5 until the PMR went or forever if need be and got on with life, pushing it just made things a whole lot worse.

PMRpro
PMRproAmbassador in reply to tangocharlie

I wish I knew why that happens - because it does happen a lot. Not sure doctors believe me though

tangocharlie
tangocharlie in reply to PMRpro

Either that or another explanation I've been pondering is the likes of you and I and many others have PMR+ as you call it or something that's really more vasculitis or somethingn there isn't even a medical word yet for than standard PMR and it's not one that goes away, so even a bit of extra inflammation from the dripping tap builds up and escalates things. I know I was under-treated for years as I was in agony below 10 Pred let alone when on 5 for 2 years but knew no better, and so were you as it took so long to get diagnosed. Maybe it's the same reason why some people go on to get GCA and some don't? As you have said many times, you could go mad trying to puzzle it out and it wouldn't get us anywhere. I've been writing something this week while I've been manically high on steroids and unable to sleep which I will share with you when I finish it, you'll probably think I'm bonkers, it's called 'what if?'

daworm
daworm in reply to tangocharlie

You have many of the same questions that I have...”what if” and “what is it really”....no one has an answer so I just keep on with the low dose of pred..

tangocharlie
tangocharlie in reply to PMRpro

How many hundreds of people have you come across on here, particularly 'women of a certain age' who are on Pred long-term and suffering because we are being treated according to some belief that we have something that will magically go away in 2 years so we can taper off steroids? Where did that belief come from in the first place? Where is the evidence?

PMRpro
PMRproAmbassador in reply to tangocharlie

One of the early papers claimed the 18 month rubbish. But a current study in the Netherlands has, at the current status at least, equal numbers of men and women. I pointed out that that was a bit irrational and she insisted that it would be more repesentative by the time they had finished. Yeah. Right ...

tangocharlie
tangocharlie in reply to PMRpro

I'll bet all the men are sorted in 18 months. And the women will be told they are the exceptions to the rules of PMR and still trying to get below 5 Pred a day 3 years later. How can anything ever be concluded when the people who write the policies and procedures don't even have the facts to base their ideas on? In the 21st century, researchers ought to be able to tell from medical records who has PMR, how long for, what worked - multivariate analysis. The starting point needs to be evidence, not a theory thought up 60 years ago when steroids were invented that says go down by 1mg a month and everything will be fine. How many people have it? Are they M or F? How many are ever 'cured'? How old are they when they get it? How long do they have it? How do their experiences overlap or differ? This is the age of big data at least, yet we don't seem to be using it. Studies I see talk about studying 14 people or who happen to live in Keele or East Anglia. I am hopeful things will change in the next 10 years but only if we shout loud enough!

Well here’s one male that’s not sorted in 18 months! 6 years on steroids and still on 13mg from a starting dose of 15mg🥴

Constance13
Constance13 in reply to Griggser

Wow Griggser that's very slow moving. I presume you've had a flare recently.

All the best. 🍀🍀

Sorry to hear that and for me being flippant. I've just had it to here with ignorant doctors and 8 years of this darn PMR thing. Your case sounds unusual Griggser, do you see a rheumatologist?

For the first 4 1/2 years I paid to see a rheumatologist but when he retired I transferred to the NHS. It’s definitely not the same and I get seen very 6 months. I don’t feel I have the same level of support and the head of the team is who I was recommended to see if I were to continue to want private appointments. I’ve been twice now to the NHS and seen different people each time. The last one got my meds completely wrong in his report stating I was on 40mg when I was actually on 14 he also stated I’d been as high as 60mg when it should have read 40mg. Told reduce by 1mg every 4 weeks. So all in all I’m not that impressed and don’t think they can offer much else. More pain requires more steroids, my concern is the long term damage of taking steroids! Loss of muscle mass is already very evident🙁

My treatment has been a nightmare, I have had to push for what I need and still have to every month. I insist on seeing the same rheumatologist, I'm lucky I have a really good one now but I've had a couple of useless ones who have done more harm than good. Basically I said enough is enough in December and I want sorting out! This forum has given me the knowledge I need to challenge stupid things the doctors have said and fight for what I deserve. I think the duration of your case warrants escalation. I think I have got loss of muscle mass in arms and legs but when I'm on the right dose of steroids there is no stopping me so it doesn't hold me back as much as not having enough steroids does. What area do you live in, maybe somebody could recommend a good rheumatologist in your area you could get a second opinion from?

Sounds a similar story! I’m located near Truro in Cornwall.

I'd start a new post as we have gone off at a bit of a tangent here, you might get some ideas and suggestions from people in similar situation/location

Sorry, but this man still having symptoms after 20 months, and have only reduced to 71/2 mg.

Sorry to hear that too

Don't you understand? PMR is a simple illness that old people get and to quiet them down they use a medicine which is called Prednisolone and all the pains go away immediately . Sorted! Next please!

😂😂🤪💥

Tamtan2
Tamtan2 in reply to Constance13

So true it’s how I feel Very sad I was so full of life now I feel I’m giving up. X

Constance13
Constance13 in reply to Tamtan2

I don't know how old you are Tamtan but "giving up" is not to be recommended.

I am 80 years old and will fight as long as I have breath in me!!

Tamtan2
Tamtan2 in reply to Constance13

So will I. just having i dont know what to do moment’ I know it’s an awful time for everyone but I feel so out of control with this illness no one seems to be able to answer any questions.

PMRpro
PMRproAmbassador in reply to Tamtan2

It depends what your questions are. Ask them in a post and if there is an answer someone here is likely to know it or where to point you - or not as the case may be.

If you are struggling with feeling out of control, put your thinking cap on and identify things you CAN control. Usually it is diet or appropriate exercise. Or a new hobby/pasttime.

We have all been there - you are by no means alone in such a struggle. There may not be 100% solid answers but we can set the scenery for you.

Tamtan2
Tamtan2 in reply to PMRpro

A list of my add on symptoms. A distended stomach causing breathlessness anyone else had this. Off balance when walking. Shakes in hands, body and legs. Floating feeling and dizziness not all together but total opposite to my usual self I have walked the Great Wall of China and numerous other walk and hikes in memory of my daughter now I 🙏🏽can hardly walk to the end of the road.

PMRpro
PMRproAmbassador in reply to Tamtan2

What do you mean by distended stomach? Are you on calcium supplements? Omeprazole or another PPI?

The balance thing is not uncommon in PMR. The other bits could be due to pred. But there are plenty who can identify with the not being able to walk to the end of the road!

Tamtan2
Tamtan2 in reply to PMRpro

Hi yes I’m on Adcal also ppi preds 25 mg. Thanks for getting back tome so quickly. X

Have to say, having just spent a lot of time researching on-line and found over 60 journal articles, that some of the experts know what they are talking about and agree with much of what we say here, often based on large cohorts. Did you watch the presentation by Professor Dasgupta (available on this Forum)?

I know ChinaWuntoo, there are many professionals who are up to date. My rant was about those who aren't!!!

Yes thanks for the heads up I watched both of those, I've read just about everything in the last 5 years but don't recall seeing many that correspond with the experiences we see on here, apart from Quick and Kirwan saying higher doses of Pred are needed and for longer than most other rheumatologists think. Which ones do you recommend?

Tamtan2
Tamtan2 in reply to tangocharlie

How much prednisone should I be on for Pmr and Gca.x

tangocharlie
tangocharlie in reply to Tamtan2

As much as you need! Please start a new post for this question and you will get more detailed advice from others

PMRpro
PMRproAmbassador in reply to Tamtan2

Which do you have? Just PMR and worried or GCA? If you are on a dose that manages the GCA symptoms it will be enough for the PMR - PMR is a symptoms of GCA for some people, not a separate item. And as TC says - you need what you need. Everyone is different so without more context there isn't an answer.

Tamtan2
Tamtan2 in reply to ChinaWuntoo

Brilliant wish I had him as rhuemy

Tamtan2
Tamtan2 in reply to ChinaWuntoo

Yes I did an amazing man wish I could see him 🙏🏽

Noosat
Noosat in reply to tangocharlie

I have been on prednisone for 1 year and 7 months. I have been at 3mg. for several months. This amount does not make me feel normal, but I can function quite well. The side effects of the medicine for my heart and eyes is very important to me. I had hoped to try dropping to 2.5 a month ago, but had a mild fall/stumble in the garden, which I didn't think important, however, the next day my left leg, my strong lead leg, was extremely painful in the thigh. X-ray showed no broken bones, although I am struggling to walk. So I am remaining at 3mg until I recover. Each day I tell myself, "maybe to-morrow will be better.":)

Tamtan2
Tamtan2 in reply to Mary63

Same here god send this forum as I would be on my own making it up as I go along but I’m getting there thanks to you angels out there.🙏🏽

Oh dear, Roxyart - you're unlucky with your GP, is there another option with a doctor who at least knows something about PMR or is willing to find out? It's downright negligent that you haven't had a baseline bone scan or even been prescribed Adcal Vit D3 and calcium supplement and I think you need to arm yourself with printed-out information from this site to show him, you don't have to be confrontational just ask for help in achieving progress, both mentally and physically. Take notes, and have questions ready for him.

They are there to help us through this and yes, it does go into remission in the majority of cases - stress causes PMR to flare and it sounds as though you are very anxious to get off pred ... don't be in a rush, slowly does it, It's the only way. We'll be rooting for you.

Roxyart
Roxyart in reply to Slowdown

Thank you very much your advice I do think I need another doctor and yes I have been trying to go off pred too quickly

PMRpro
PMRproAmbassador in reply to Roxyart

It isn't just quickness - it is the size of the steps too, Which is why Snazzy and I wondered how you were going about it.

When you try to reduce, what steps do you do over what time?

Roxyart
Roxyart in reply to SnazzyD

Once I got down to 5 mg I then stayed on it for about a month and reduced to 4 mg and then I was doing all right and then I started cutting it down to two and a half for three weeks and then another one in the quarter for another three weeks and then I ended up having a flare

SnazzyD
SnazzyD in reply to Roxyart

Sounds very fast and quite possibly too fast for your adrenal function to catch up too. That alone can make you feel fluey achey and wiped out just for starters and sometimes I wonder if flares are caused by that stress. Just for comparison from 4mg I dropped 0.5mg every 6-14 weeks with the longer periods coming in as I got lower. Even though we are dealing with piffling numbers by this point, they make a hell of a difference.

PMRpro
PMRproAmbassador in reply to Roxyart

No wonder - from 5mg you go slower and in SMALLER steps. 1/2mg at a time and preferably using one of the slowed tapers we go on about. It isn't just the PMR now - it is returning adrenal function as well. One top rheumy likes to keep patients at 5mg for up to 9 months (yes, NINE) and find that helps the rest of the journey. These are low doses - few risks. The risk is of a flare because of trying to run instead of creeping...

PMRpro
PMRproAmbassador

Half of patients are off pred by 6 years but 40% are still on a low dose of pred at 10 years and it is thought that about 5% need pred indefinitely. It is impossible to know whether that is because of the PMR or poor return of adrenal function which can also be managed with a low dose of pred.

medpagetoday.org/rheumatolo...

practicalpainmanagement.com...

are two articles about the same work that established the figures I gave above but with different emphases.

healthunlocked.com/pmrgcauk...

In his webinar 3 weeks ago Prof Dasgupta said he keeps some patients at 2-3mg indefinitely, finding it prevents the risk of relapses.

Below 5mg most good rheumies stop worrying - the risks are small even long term and trying to force a reduction only results in a flare that will take far more pred to sort out if it gets established.

And I echo Snazzy's question - HOW are you trying to reduce from 4mg?

Roxyart
Roxyart in reply to PMRpro

Thank you great advice I think the next time I see my doctor I need to print some of this information out for him

lizzie47
lizzie47 in reply to PMRpro

Hello PMR pro,you mentioned 'webinar'in your reply,could you please tell me what it is.Thank you lizzie

PMRpro
PMRproAmbassador in reply to lizzie47

If you click on the link I gave it takes you to Fran Benson's post with the link to the webinar which is on the PMRGCAuk website for everyone to listen to - it is a lecture done by zoom.

Hi Roxyart, you’ve come to the right place for assistance. As a rule you don’t want to reduce the dose any more than 10% of current dose. Especially at lower doses. Yes, that means gettin a pill cutter and halving or even quartering pills (so get a good one!). I had PMR for 6 years when I got GCA, so yes you can figure on it lasting longer than what our doctors tell us. No rush at doses lower than 10mg, so turtle it is!

Hello there, I’ve been on relatively low doses of Prednisolone about 25 years now. Never on more than a 15 mg dose for about a month.

18 months later usually down to about 5 mg for long stretches.

My experience of actually stopping the dosage with some lasting recovery is rarely successful. Within 2 months my shoulders biceps and forearms go into that familiar nagging pain I so sorely recognise.

So my Doctor eventually suggested staying continuously on 2.5mg as a maintenance dose.

So for the last 18 months I’ve stayed on 2.5 mg in an effort to just maintain in control of pain. This is working fine.

I often ask myself - Should I be doing this? Do I actually have PMR? Is my pill popping actually necessary? and above all- Am I damaging myself?

All immaterial! - as it Works for me.

I take two Accrete D3 daily too at a separate time to Pred, and try not to ever take Paracetamol type

painkillers of any sort unless I have other pain. Rarely used at all.

I’ve always hated pills! - as I like to try using my mental strength to avoid drugs if I have a headache for instance.

As Pm Pro’s post suggests, some folks are on Pred Indefinitely. I guess that’s gonna be Me.

I hope my recent life story helps you in understanding PMR long term, and our relationship, however inconclusive, with that amazing little (poxy!) pill I love and hate taking.

🌸🌸 Do be kind to yourself & remain as calm as you can, it will help if you reduce your stress level.

So try some Chilling out, despite your pains.

Good luck now, S.

I'm lucky, have a super doctor looking after me. I tried to lower too quickly.

She has me reducing 1 mg a month to 10 mg thereafter by 0.5 a month to 5 mg and see how we go. ....probably every 2 months down to 2 but I must wait and see....cannot be rushed.Could be 2-5 years. Just been with Pred a year.

Chances are you will eventually be able to taper off pred but, like some of the others have said, and it's been my experience too, there's a long period in the middle, between the start when you are on a slightly higher dose to mop up all the accumulated inflammation and control the symptoms, and the end where you taper off slowly to allow adrenal function to return, and also avoid the risk of a flare if the disease is still simmering away at a low level. That middle period can last for years. I was around 2-2.5 for at least two years, with the occasional unsuccessful attempt to taper lower. Then at last a taper "took" and a year later I was at zero pred - although only for a month so far, still holding my breath that PMR really is in remission.

I've was first diagnosed with PMR over 3.5 years ago now. The last major flare was just over 2 years ago. At that time I decided I'd had enough of my rheumy putting me through the pain of a flare up just because he thought I needed to get off prednisone quicker. Since then I've had to battle my rheumy at times but ultimately I've taken control of my own destiny for right or wrong. I slowed my reduction down to .5 mg every 7 weeks. If there was a hint of not feeling right I'd stretch it out even further. Could I have reduced quicker? Possibly. Could I be down to zero by now? Again, possibly. For me the bottom line was that I did not want to be hit with a major flare if possible. For me, flares had the result of starting the reduction all over from the beginning.

About 2 months ago I had an appointment with my rheumy and he commented how all the test results looked great regarding inflammation. I said that matched how I felt but I was in no rush to get to zero. I was currently at 3 mg. He said I could "put your feet up on a desk and take 3 mg for the rest of your life" and he would be fine with it. For once I'm in total agreement with him.

Could I be at zero now? Very possibly but I won't risk the slightest chance of a flare. To me, once one gets down to a low dose such as 3 mg the side effects are so minimal that it really doesn't make much sense to focus on getting to zero. The better focus is ensuring that you are still at an effective dose that will avoid inflammation and pain. My mantra has been living by what PMRpro has repeatedly said - not focusing on getting to zero but instead taking the lowest EFFECTIVE dose.

I'd like to get off prednisone but it's not high on my wish list. A couple years ago a regular poster said something to the effect of..............."There are many of us with PMR who feel we were broken unfairly early. People physically fit, active and of impact, standing blinking in the light of an unfamiliar sun, wondering how we got there." Those words really struck home with me but I've also accepted that this is who I am now. What I was is past and I sometimes mourn the life I not longer have. BUT I am thankful for my life with prednisone. The alternative doesn't even bear discussion.

Polypoly
Polypoly in reply to Raven1955

You paint a very graphic, accurate and thoughtful picture for me! - and for many others I suspect who may read, and learn from your thoughts.

Thank you so much for the common sense I found in your comforting message.

Be Lucky. S.

Raven1955
Raven1955 in reply to Polypoly

Thank you for your comment. I appreciate it. I have managed to still work a full time job and much of it now is dealing with engineers and their project requirements. I look at the requirements and then tell them what works in the world of reality. I guess I've used the same procedure with my dealings with my rheumy. Common sense still goes a long ways in most things.

Have a good summer - have fun and stay safe!

Tamtan2
Tamtan2 in reply to Polypoly

Loved you comment I would love to try your theory sounds sensible and better than fighting every step with Rhuemy. X🙏🏽🙏🏽

Polypoly
Polypoly in reply to Tamtan2

Hello Tamtan

Thank you for your sweet reply, it was so very nice to read.

Especially now - as I’ve just followed up on a long string of your past posts 🌺🌸🌼 - I’d send real flowers if I could, as it seems to me your anxiety has been so very sky high, I sensed you’ve needed a verbal hug.

I’m so sorry the complex worries you’ve illustrated on your many pains have left you searching so desperately for helpful answers.

I’m not qualified to add further to the wealth of good information you have gratefully absorbed here from all these kind & great people, - all fellow sufferers too, who have been giving you assistance from their wealth of painful personal experiences of PMR /GCA etc.

My PMR troubles seem so minor to me now, having studied Your own journey here, - to a place of kind help, do continue please to follow your friends comments, which I hope will comfort you from here on into your recovery.

It Will happen, I’m sure.

My best wishes go with theirs too.

xx from me - S.

Tamtan2
Tamtan2 in reply to Polypoly

Thank you 🙏🏽 💐

Thank you for that insight I feel much better God bless

I have pmr and gca and wonder the same as you will I always be on prednisone living in an unnatural fog Unable to think straight act normal. I’m on 25 mg and feel I need to taper a bit my blood results are near normal but no tapering of Prednisolone. pmr for the last Good few years and Gca diagnosed March this year although I was misdiagnosed for 18 months.🙏🏽 No in any Hurry to zero Just to feel in control 🙏🏽

Just received a letter from consultant respiratory physicianI had a ct scan 17 may just got result to day after numerous request for results they have found nodule at the bottom Of right lung caused by methotrexate and minor inflammatory changes.Appointment for another ct end of august to check again. I have been saying my breathless since 24 April 🥺

PMRpro
PMRproAmbassador in reply to Tamtan2

They don't often mention the lung effects of mtx - they really should.

Tamtan2
Tamtan2 in reply to PMRpro

I’m so upset by this as I asked for a dexa test before starting mtx and on,y tolerated it for 8 weeks before becoming really poorly. I’m on list to have deta soon ............a bit late damage done been telling anyone who will listen I’ve been breathLess for 4 month canT walk very far And inflammation still active. 🙏🏽

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