Can you live a hong healthy life taking 7 mg of prednisone indefinitely?

[Blurry62]

Bottom line: I feel good on 7 and feel like garbage on 6.5 ( been on 6.5 for over a month.)

I have no inclination to go to 6 mg of prednisone because I feel rotten: Stiff, anxious, tired.

That's all I have to say. Talk to me.

GCA since Feb.2018

[Bcol]

Morning Blurry62, I'm sure other will be along later in the morning, although you may be in bed by then. I know that we have a number of people who have been/are on higher doses than that for a long period of time. The dosage you are on is also around the adrenal glands dosage, when they need to start waking up and doing their normal stuff. Having had a lazy few months/years when the Pred has done their work for them and they have slept they don't always like doing that and you may have to battle/grump your way through that for a while whilst they ease into action. It can take a while and occasionallythey don't. How long have you been on 7mg and are you doing more because you feel good?

[SheffieldJane]

Yes, for now. You’ve reached your ideal dose. I stayed at 7 mgs for a year. It worried me at the time but with hindsight, it was a good productive time for me and I felt well. I kept giving a reduction a go to no avail like you, then something shifted and I got down to 6.5. PMRPro tells us that a well respected consultant Rheumatologist kept his patients on 10 mgs for one year, as a matter of course. Protect yourself against side effects as best you can - diet, eye checks , DEXA scans - bone care. Be happy !PS. “ Hong” maybe harder to achieve though. ☺️

[Blurry62 in reply to SheffieldJane]

Thank you for your reply. My internet has been unstable so I'm just getting back on.

My bone density has been slipping. Im considered severe osteopenia now. That's why I've tried to reduce. I am keeping calcium, vit D, and K2 up.

[DorsetLady PMRGCAuk volunteer]

You can, but honestly I doubt you’ll need to be.

Been on Pred 3 & half years…..so probably some time to go…took me another year in top of that to get from 80mg to zero. Like you it also too me over 16 months (18 in my case) to get a diagnosis and start treatment.

You are also around the level when your adrenals need to think about re-awakening, so that can add in more issues.

If you need 7mg at the moment you need 7mg, you won’t forever….just relax about it, and you’ll find one day you can reduce….

go back to 7mg get on track again, and then when you reduce stick to 0,5mg a time, but also try a slower method - such as this - healthunlocked.com/pmrgcauk...

[Branches in reply to DorsetLady]

What do mean by the adrenals need a reawakening ?

[DorsetLady PMRGCAuk volunteer in reply to Branches]

Once you are on a dose higher than about 7.5mg and/or longer than 3 weeks your adrenals ‘go to sleep’…..that’s because Pred is releasing more cortisol into your body than your adrenals would, so they become redundant - temporarily.

This post explains -healthunlocked.com/pmrgcauk...

[Blurry62 in reply to DorsetLady]

I've been using DSNS and reducing by .5 and certainly don't do well with any changes. It's been a knock down drag out all along.

Thanks for the pep talk.

[SnazzyD]

Hmm, difficult to answer because this is sooo individual. My story is different. For me 7mg didn’t feel like a safe dose to be on indefinitely; I still felt very much under under influence of steroid and the effects. I have always been pretty sensitive to it. I also felt that it was the worst of all worlds because it wasn’t enough to feel covered for the day (that was 8mg+) but too much for my adrenals to wake up. The Endo concurred with this but they may have had a vested interest in getting me down. They seemed very keen to get down to at least 5mg. Anyway, I also had a very strong sense I had to punch through that wall to get to a dose that would challenge my adrenals more. To do that I was prepared to feel rubbish because my gut feel was strong and I kissed goodbye to 6 months virtually. It was hard and I felt it would never end and I was quite depressed, but it did end. I think that was key; being prepared cut down on my life in order claim it back later and I’m so glad I did. For me personally, I think 7mg would have had negative effects long term so I needed to see if I really needed it. I know a lady up the road who has another AI condition who never gets under 7mg who lives a busy life but she knows her body is being caned by it. PMRPRo on the other hand is over that and doesn’t appear to be too bad. So, a very different story and there is no telling by anyone what any other body needs or can tolerate.

I would though make sure there is always an honest internal dialogue going on about how much desire there is to take it in order to avoid compromising one’s lifestyle or grasping at feeling well indefinitely. As others have said, they needed a spell of stability to be ready to drop again. I have to say, it really takes the biscuit to be feeling worse under 10mg after all the years of struggle with Pred.

[Viv54 in reply to SnazzyD]

HI SnazzyD, well said ! This is exactly how i feel, i am now waiting to hear back from an Endo, After almost 3 months i have dropped to 6 and yes im not on top of the world , but feel i have to slowly do this . Waiting for something great to happen, think my fatigue is a little better.I now realize that when im over come by it i am lucky enough to be able to rest ! My mind set is different , i say to myself , well managed that day a bit longer without crashing ! Maybe just maybe, something inside might be about to awaken ! Fingers crossed xx

[Blurry62 in reply to SnazzyD]

I wish we could have tea. You are reading my mind. I do feel unsafe at 7 mg.6 months. Wow. That's daunting. I'm missing so much of life. I'm still grieving all I've missed over the last three an a half years. How do I know I'll feel good after this? I don't that!

You're right, it takes the bisquit.

Hug

[SnazzyD in reply to Blurry62]

Yes, it can drive one mad thinking about what one is missing so I just tried to put away my yardstick for normal life and appreciate much smaller things. I reminded myself that when I was on chemo, I would rejoice being able to do the washing up. I also stopped trying to second guess when I would be better only that I would, one way or another, because 1000’s of people have done so before me. Of course it was not all roses and birdsong but one way or another one has to stop torturing oneself with comparisons and timetables which just makes it worse. This makes it all sound so easy, it isn’t because as you’ve probably noticed, life carries on so one can feel like one is trying to catch the bus that keeps driving off. As for panicking about being on 7mg, what effects do you feel now?

Also, what do you do in your daily life?

[Blurry62 in reply to SnazzyD]

I work as a stylist 6 hours per week. So my concerns about staying g at 7 mg is ongoing weakness. I've also experienced muscle wasting and loss of bone density since Feb 2018 . I try to walk with Nordic sticks and have had 2 treatments with Reclast.

It's all a fight.

[PMRpro Ambassador]

I've been on pred for over 12 years now, a large part of it at above 10mg (I have been lower) and for the last more than a year at 15mg because stress and PMR don't mix (not just Covid). Nevertheless, I don't think I am particularly unhealthy apart from PMR and myofascial pain syndrome and the pred gives me a pretty good QOL relative to them. I don't have diabetes, osteoporosis, not even lowered bone density, I gained weight with PMR and have lost most of it even while on pred, no sign of cataracts (I wish), I bruise but that is as much due to anticoagulant therapy for atrial fibrillation (caused by the a/i part of PMR) as to pred.

I had had 5 years of unmanaged PMR before pred - the 12 years on pred have been infinitely preferable because I don't hurt as much and I can function. I no longer ski although I did until 6 years ago and walking the mountains is not an option either - but both due to knee injuries rather than pred.

3+ years is short really even for GCA - we reckon more like 4 to 5 years is most common. PMR takes longer. As Bcol says, at this dose it isn't just the recurrence of the GCA/PMR you are considering, there is also adrenal function to be thought about and lowering the pred requires the adrenal glands to top the pred up with cortisol. That isn't a quick fix - it can take months while you feel decidely ropey in the meantime. Snazzy has written well on that as it happened to her.

I think you do have to keep trying to reduce the dose - if you didn't you would never get anywhere - but it becomes a balance between that and need. As a sole carer I have to be able to function 24/7 and at present I need 15mg, the last few days I flared even at that and needed a bit more. If I didn't have that demand I would be trying to get lower, even 10mg would be very acceptable. Prof Dasgupta told us he often has patients on 2-3mg long term as it reduces the likelihood of flares/relapses. I'd say that 5mg is a good compromise - if you can get there. GCA is more likely to go away than PMR I think but if lowering the dose of pred makes you feel the QOL isn't worth it it is something that must be faced up to. Most good doctors stop worrying at 7mg and below - but it is better to be lower if possible.

[Blurry62 in reply to PMRpro]

Thanks. I hear you.

[Uglow]

Thank goodness I’m hoping to be like uou x

[kulina]

It took me almost 2 years to get from 7.50 mg Pred to 4.50 mg. This is the toughest reduction. At this stage your adrenals have to start working and sometimes it takes time. Don't stress, listen to your body and stay at the dose that makes you feel good. Makes no sense to be in pain. You will be able to reduce eventually but you must listen to your body. Stressing that you can't reduce fast enough won't help matters either. You will get there. I can tell you there is light at the end of the tunnel. I'm at 3 mg Pred now.

[Viv54 in reply to kulina]

So good to hear !

[diana1998]

My neighbour took 7mg for years. Had a great life and died aged 92. He couldn't get below.

[Blurry62 in reply to diana1998]

Thx

[S4ndy]

My Rheumatologist is keeping me on 5mg. My blood markers are stable at that dose and he thinks this is the best thing for me.

My symptoms of PMR are controlled at the moment and I haven't had a flare in 12 months. I have been on 5mg since Jan 21 and on prednisolone from March 2016.

I am also riddled with arthritis and my Rheumatologist thinks keeping me at 5mg is helping to manage it. I do get flare ups in my spine. I know this is not PMR though as it responds to NSAIDS and painkillers. Thankfully, both my GP and Rheumy are really supportive and helpful.

I am waiting for a DEXA scan to check my bone density because of the 5+ years of steroids. I had one at the beginning which didn't show any osteoporosis or any deterioration. In fact my scores were good. So am hoping that this is still the case when I get the scan.

The only real issue I have at the moment is that my hearing is not great and I am obese. I have never been thin but put on a lot of weight in the past few years. I am doing the 5:2 diet and try to watch carbs on my non fast days. I have lost nearly 2 stone in about 4 months which, although slow, it's staying off 🙏😀

[PMRpro Ambassador in reply to S4ndy]

That's really good - 2st on 4 months isn't slow!!!!! I've managed 5 or 6kg (11lbs) since the start of Lent! I am on 15mg pred though ...

[S4ndy in reply to PMRpro]

Some weeks it's a loss of one pound then another might be 6oz! Still it's all in the right direction First few weeks was 3lbs a week which was motivating. Hubby has lost about a stone too. He's diabetic and not too much overweight but anything he loses is good too. Trouble is both of us love sweet things. Thankfully watermelon is in season and we love stone fruits so that helps with the sweet cravings.

[PMRpro Ambassador in reply to S4ndy]

The speedy weight loss at the beginning is quite common - a change in fluid balance quite often. Prof Yudkin (of Pure, White and Deadly fame) had a lovely graph showing three different types of weight loss in the same period: big loss to start that then plateaued, steady weight loss over the whole time and nothing at first and all the weight loss appeared in the final couple of weeks. The success of the Newcastle diet is partly the success experience losing weight quickly.

Careful with the stone fruit - hidden carbs! My downfall this week has been fresh green figs ...

[Blurry62 in reply to S4ndy]

Awesome. What's the 5:2 diet?

[cycli in reply to Blurry62]

think it's Dr Mosely 5 days eat normally 2 days fast. Others probably know more.

[S4ndy in reply to Blurry62]

Dr Michael Mosely researched and developed the diet. You eat normally for 5 days then on 2 days a week you eat below 800 calories (or 500 Cal's if you can manage it). You can find out all about it online or order his books. There's also another method of fasting for 16 hours and eating for only during the other 8 hours but you do have to watch what you are eating in the eating interval and I find it easier for me to just do the sub 800 cal fast days. I choose to do Tues and Thurs. I still eat well on those days having porridge for brekkie and filet steak and a huge salad or chicken and a huge stir fry with maybe a piece of fruit or a no sugar jelly for dessert On weekends I don't restrict anything and in Mon, Weds and Fri I try not to go too mad on the carbs. I have quite specific dietary requirements as I cannot eat anything wholemeal or high fibre due to my IBS. Some weeks I might only lose a few ounces and other weeks a pound or two. With me there's a significant loss if I do two exercise sessions a week but because of my joint problems this isn't always a possibility.Over the years I've tried many "diets" none of which I stuck too. I nearly always gain twice as much weight back as I lose. I am determined that this 5:2 regime will be a lifetime change not just to reach a goal weight

Had I not been told I was fat at school, when I now know I wasn't, I would never tried to diet in the first place and would probably have saved a lot of heartache.

[USAGCA]

If your disease has not returned, I would not go back up. It is best to keep reducing the dose, even if you’re doing so slowly. Yes, the effects of withdrawal are horrible, but I suggest that you stand your ground. Be happy about the progress that you’ve made.

[Blurry62 in reply to USAGCA]

Thank you. I am planning to wait it out. Hate it. I know everyone understands this.

[SweetwaterRoad]

My rheumy says no amount of pred is safe long term. I’m currently at 3mgs and reducing only 1/2 mg per month. So far it’s working. I’ve had PMR and been on pred since 2016 & can’t wait to be off entirely.

[DorsetLady PMRGCAuk volunteer in reply to SweetwaterRoad]

Depends what he means by safe…..you could say that of any medication, but many are essential.Disturbing comment from a medical person,

[SweetwaterRoad in reply to DorsetLady]

I think he meant without side effects. I did not find the comment disturbing but rather truthful.

[DorsetLady PMRGCAuk volunteer in reply to SweetwaterRoad]

Fair enough.