How long on Pred

[palewolf]

I was diagnosed 10 days ago and put on 20mg Pred, which I have to reduce to 15 mg after a fortnight. My GP said I should be able to come off it in 6- 9 months. Has anyone ever been on it for such a short time or is my GP living in cloud cuckoo land?!

[jinasc]

Spot on 'Cloud Cuckoo Land' - any chance on a different GP, perhaps a more clued up one?

If you have to stick with that practice, you are going to have to educate s/he slowly and surely.

Go here to download two copies of the British Society of Rheumatologists Guidelines on the Diagnosis and Treatment of PMR , on for him and one for you.............

pmr-gca-northeast.org.uk/us...

On second thoughts, download the one on GCA as well........................

20 mg should will start the process of controlling the inflammation but to come down by 5mg, when the golden rule is no more than 10% at a time........and two 2 weeks is ambitious to say the least. ....thousands wish............you need your Blood tested again and also how you feel. Keep a diary for each day. Take someone with you at your next appointment - back-up.

Whatever you do try and avoid yo-yoing it can lead to problems and in the end taking more pred than you might have needed with slow and steady.

1-2 years - I don't know anyone during the past 11 years who has come off them before the 2 years and they were men and two I know PMR came back 1 year later. No cause, no cure at present.

[palewolf in reply to jinasc]

Thanks jinasc, it's so good to know I can get good advise on here. I read everything I can on this disease and I've never heard of anyone "cured" in less than 2 years, usually much longer. Also is it normal practice to be referred to a rheumatologist as I have noticed lots of you have mentioned being in the care of one. My GP has mentioned nothing about this to me.

[jinasc in reply to palewolf]

PMR is generally dealt with at Primary care (GP's). A referral to Secondary level, (Consultants) is always dealt with by a Consultant.

If complications arise with PMR then a referral is made, the Consultant sorts it out and either back to primary care or they keep you on their books and the GP is told to make a call if a problem subsequently arises. Well that is how it works in my practice, but after 11 years, I realise my luck was in - big time.

Sometimes with GCA, if the GP is up to speed, mine was, they looked after me mainly, but I (GCA only - long story - sent you a PM) I saw the Consultant every time my GP picked up the phone and talked to him.

There is no harm in saying to your GP, is this the first time you have come across someone with PMR? Most practices rarely encounter GCA and with PMR no more than about 5 or 6.

[PMRpro Ambassador in reply to palewolf]

Many in the US are under rheumies because of their system. Doesn't always help though. And the 2 UK rheumies I saw got it totally wrong (especially the first who was rude with it) - the one I have here in Italy is fantastic but he is a world name in the field of PMR and GCA,

[suzy1959]

Yup! Cloud cuckoo land!

Where do they get these ideas from?

I'm sorry it's not good news, but I think it is better to be realistic and then you are less likely to put your life on hold just waiting for the day you get better. What is more helpful is learning how to deal with this and finding a new life with PMR and Pred. in it! PMR does what it wants and there's not much we can do to control it. The Pred. does work though, so at least we have a way to manage the symptoms.

[Hidden]

You need a dr more inform on current thinking! Sometimes i gripe about my surgery but dr told me probably 2 yrs. She did do the 1mg a month reduction (which caused a flare) but at least immediately referred me to rheumy and put pred straight back up. At least it gives me something to work with. You will have to hold your own, and use the forum!

[palewolf in reply to Hidden]

Yes, thank goodness for the forum.

[Soraya_PMR]

The 14th April is St. Tiburtius Day and is traditionally when you will hear the first cuckoo. 😉

[palewolf in reply to Soraya_PMR]

Ha Ha!

[Soraya_PMR in reply to palewolf]

😉

[PMRpro Ambassador]

He's in cloud cuckoo land - unless it isn't PMR!

There does appear to be one form of PMR symptoms that is like reactive inflammatory arthritis and it may disappear quickly once the underlying cause is gone - a virus maybe.

But for your GP's eddification:

rcpe.ac.uk/sites/default/fi...

was written for GPs by a top rheumy group to help them understand PMR and GCA and how to manage them. It is based on a minimum of 2 years.

and these

medpagetoday.org/rheumatolo...

practicalpainmanagement.com...

are articles about this study

ncbi.nlm.nih.gov/pubmed/287...

which found the median duration of pred management for PMR is 5.9 years.

Depends on how generous you feel - I'd print them off and encourage your GP to read them. I wouldn't expect him to change his mind on the basis of what some anonymous woman on an internet forum you found via Dr Google said - but she says what she says because of respected mainstream medicine research.

[DorsetLady PMRGCAuk volunteer]

absolutely cloud cuckoo land!

Bit more reading ---maybe for both of you!

healthunlocked.com/pmrgcauk...

[palewolf in reply to DorsetLady]

Thanks, I'll have a look.

[Twopies]

I'm in the u.s. under a care of my gp. When I saw him last week, I mentioned again the 5.9 years median duration. He said, "I know you always tell me that, but in my experience, my patients have all got off pred in 1-2 years." He has told me in the past that he sees maybe 5-6 new cases a year. Of course they could go off to rheumies after 1/2 years but even so, he would remain their primary. That odd conversation with my gp has been sticking in my mind--wonder how they all got off pred so soon...he said no relapses when I asked.

[yogabonnie]

he's hoping you don't sink into a deep depression when you hear 2-6 years.! But I DO have friends who got off in 18 months. Good luck! Reduce to 15 and then much more slowly after that. Type in TAPER in search and loads of good advice will pop up. so sorry you have been diagnosed with PMR but it is workable and doesn't KILL us which is ALWAYS a nice thing!

[palewolf in reply to yogabonnie]

Thanks yogabonnie, I live in hope!

[alvertta]

Cuckoo.

[piglette]

Has your GP had experience of others with PMR? I hope he did not get them off pred in 6 to 9 months.

[palewolf in reply to piglette]

I'm not sure, but when I explained my symptoms he immediately said PMR and arranged a blood test straight away to confirm. He rang me back first thing next morning with the results and started my off on Pred. I shall be asking him a lot more questions next time I speak to him though.

[piglette in reply to palewolf]

I had a very young GP who gave the impression that she had dealt with hundreds of people with PMR. I then discovered a year later I was the only one!!

[MhairiP]

I'm the exception to the rule - I was on pred for just under 8 months (I stopped taking it at the beginning of March, and so far, so good!). I do wonder, though, if I was mis-diagnosed and had inflammatory arthritis rather than PMR, as PMRPro mentions in this thread. Whatever it was, I'm keeping my fingers crossed that I'm done with it!

Interestingly, one GP said I "should have stayed on pred for 2 years". Why? 🤔 Surely people should be looked at on a case-by-case basis - some people will need it for longer, some for less! I do hope your GP is reasonable and accepts that you need what you need - and you may well need it for more than 9 months.

[PMRpro Ambassador in reply to MhairiP]

It is said that people who get off pred quickly are at a higher risk of relapse. So what? You have had umpteen months NOT on pred even if you have to go back on it.

[palewolf in reply to MhairiP]

That's interesting. What symptoms did you have before you were diagnosed? I assume your GP did all the blood tests which would point to PMR.

[MhairiP in reply to palewolf]

In June last year I had a sore shoulder (which I'd had intermittently for a couple of years) which quickly developed into 2 agonising shoulders & arms, and stiffness; in the mornings I could hardly move; getting washed and dressed took a couple of hours. Blood tests showed raised inflammation markers (PV 2.08; CRP 42). I started on 15mg pred and almost immediately felt relief. The GP said to take 15mg for a month, 12.5mg for a month, 10mg for a month, then reduce at 1mg per month. After 3 months of doing what I was told, all pain, stiffness, tiredness had gone, so I started reducing a bit more quickly - I felt fine, so I thought why not try reducing after 3 weeks, rather than 4 weeks. I had no adverse affects so carried on and by March was down to 0.

I'm being vigilant about return of symptoms - I've still got some pred in the cupboard in case I need it again!

[palewolf in reply to MhairiP]

Well it sounds like PMR. I had the painful shoulders but also both hips and groin. Mine came on suddenly (within a few weeks) although I had had a painful hip for a couple of years on and off. When I couldn't turn over in bed I realised it was something different. Maybe you were just lucky. I hope you continue to stay pain free.

[MhairiP in reply to palewolf]

Thank you. I wonder if it's coincidence that we both had niggling pains on and off for a year or 2 before developing full-blown PMR (although I do wonder if I did have PMR in the first place!).

[palewolf in reply to MhairiP]

I don't know,maybe. My hip had bothered me for ages and was always worse at night often waking me up. I would spend the night moving my leg around trying to get comfortable. Once I was up and about the pain eased. When my PMR started it was so much more intense to the point where I just could not turn over in bed and it would take me 20 minutes to get to just sitting on the side of the bed and then another 10 minutes to try and stand up. As soon as I started the Pred my pain just went, although my shoulder remains a bit sore first thing in the morning. I really hope I can reduce my Pred in as short a time as possible and you have given me hope that it is possible. Stay well.

[PMRpro Ambassador in reply to MhairiP]

I'm pretty sure that PMR does really tend to creep up on more people than the ones who wake up one morning in agony - I'd had little niggles for months before the first real signs appeared in force and they weren't typical at first. Then it hit me like a ton of bricks one day.