Length of time on Pred

[Harrywogan]

Sitting on my own watching Xmas movies,and iam wondering how long you lovely people have been on pred it's 5years for me and trying not to lose heart but hard xx

[Koalajane]

it will be 6 years in March!

[Harrywogan in reply to Koalajane]

Thanks Koalajane we are about the same.good luck x

[Louisepenygraig in reply to Harrywogan]

same for me too - March or April. Down to 5.5 now and hoping to be on 5 by Christmas if I can. I'm not trying to rush it any more

[Temeraire]

It will be 5 years for me in January. Still on 7mg Pred. I do know what you mean, I would be happy just to get to 5 but even that seems a long way off! However I just have to remind myself I’m lucky really. Am able to function and make best of things. Enjoy the movie 🎥

[Harrywogan in reply to Temeraire]

Good to know Temeraire,it's what pred doing to my muscles that I don't like,take care x

[Elispeth]

It's been 5yrs for me and I'm still on 7mg. Been trying to drop for a long time but due to ill health, including covid, it has been a struggle. I have been as high as 15mg three times and as low as 1.5mg at one stage. Nowadays I think that my mobility is more important to me than reducing and getting into difficulties.

[Harrywogan in reply to Elispeth]

Thanks Elispeth,good to know,think iam feeling very low will give myself a good talking to. You keep well,Harry x

[Elispeth]

Sorry to hear that you are feeling very low at this moment in time Harry!I am wondering if you could be kind to yourself and give yourself some TLC? A chronic illness sometimes makes us feel very low - myself included on this one. It's very hard to wake up to it continuously day after day isn't it? Everyone on this site feels like this at some point. I try and keep hold of the fact that I often have good days and bad days and when I have bad day I try and rest in preparation for the good days that very often follow - in fact its the resting that helps this to happen. I have just been in bed for two days completely out of sorts. I am looking forward now to getting my appetite back and getting back out into the fresh air to walk a bit. Take good care of yourself too Harry and keep safe and well.

[SheffieldJane]

7 years total for PMR and then GCA/LVV. It doesn’t help to be made to feel guilty about being on Pred and to be misinformed about the duration of these diseases. Fortunately my Rheumatologist does and did neither.

[cathygalbraith]

I have been on it for 10 years.

[krillemy]

On and of for 3 years.

[Rose54]

zHi

It’s 7 years for me

Had to go back to 15 mg in March but down to 10 a day at present ,

I have a wonderful Son who keeps me going .

I find l feel better if l do something every day

but know that’s not possisble for everyone

[Jackoh]

7 years for me. It is what it is and some days are better than others. It has also helped me to say no to a lot of things and not feel guilty and to look after myself more. Xx💐

[Sho-Sho]

6 years now - stuck on 5mg, I keep trying to reduce so so slowly but feel so ghastly & exhausted that one wonders whether it’s worth it. Am 77 years now & it is vital to be able to socialize & am able to walk my dogs every day - I know my adrenal function is very very sluggish on this level of pred & won’t do any more unless I reduce the steroid but for me now it’s a life balance.

So sympathy to you Harrywogan, I think there are a lot of us in the same boat!

[Gaz227]

I will be 8 years this coming March , I am also now on MTX 10mg Injections it stops a lot of my arthritic pain but not really helping me get off pred , they keep wanting me to up the MTX but I’m apprehensive , last thing I wanted was to be stuck on both drugs but it looks like I am now , it’s very depressing to say the least .

[Daffodilia]

Four years for me - glad there is a pill for this ill

[Fimckenz]

7 years for me and cannot get off 5mg. But it works so I don't push myself to reduce. At least it's below the 7mg Mark.

[Hidden]

When I started this journey a year ago the GP told me I could reasonably expect to be off pred by this Christmas and dropped me down quickly from 15mg last December to 4 mg in October of this year. The result of that as you might have guessed was a huge flare followed by a yoyo rollercoaster of up and down pred - me going up, GP dragging me back down and causing the symptoms to reappear every time until I discovered this forum and decided to follow the advice of people who had been through it themselves.

It's only thanks to the advice of those on here that I'm finally beginning to get it under control again. I'm back up at 12 mg for the next couple of days then it's down to 10mg and we'll see from there.

So much for being off it by Christmas....

[SusyTe]

I have been on Pred for 6 years. Managed to get to 4 mg about a month ago. I will be 60 in January but feel exhausted and a lot older. Just got to keep going. I find gentle exercise such as swimming, a walk in the fresh air, reading a good book or listening to Absolute 80s radio lifts my spirits - and a square or two of Montezuma’s dark chocolate!

[Cally55]

7 years next january. On 5mg. However I am now apparently taking it for adrenal insuffiency! The short synacthen test I had a few weeks ago showed insuffiency so now I have to go another 6 months on 5mg when they will give me hydrocortizone for a bit and try again. I felt terrible when I got down to 2mg and my rheumatologist put me back on 7mg and ordered the test, I had to wait weeks for an appointment with the endocrinologist who organises the sst who then said taper to 5mg and call the nurses to organise one. This took several more weeks.

I feel a bit low on 5mg but am getting by. I wonder why 5mg is the standard for a physiological dose. I am not large, 6 years of GCA have taken their toll. I have progressed from being someone of 65 with an unusual illness to being an old person with multiple illnesses, most of them caused by treatment for the first one.

Getting outside always cheers me up but on the whole this illness is a bit of a beast.

[PMRpro Ambassador in reply to Cally55]

OF COURSE the synacthen test showed insufficiency if you are on 5mg pred - the only positive of wasting time and money on the test is that you have a baseline for your basal cortisol and by repeating just that you can monitor if adrenal function is improving. And the trouble with endocrinologists is that most of them haven't heard of PMR never mind know that even 1mg of pred can manage the PMR - and both PMR and adrenal function are the problem now. HC rarely manages PMR well, if at all. It isn't that simple.

[herdysheep]

More than 10 yrs for me. 1st 7 yrs pretty difficult with flares etc, but at last, I feel a bit more relaxed about it. It will go when it is ready. Learning how to mitigate any side effects of pred has made a big difference. It was upsetting that a decent diet and exercise did not save me from high cholesterol and high bp but then I am older too!

[Janet57]

Hi Harry, nearly 10 years for me. Don’t lose heart. You need pred to manage your disease and keep the inflammation at bay. Interestingly I was at my Rheumatology appointment yesterday (first one since 2019). A new guy, He said that there were three general groups of people with PMR. Those whose disease dissipates within a two year framework and no longer require medication, those who over time can manage it with less than 5mg of pred and that can be over a much longer period and the third group who need other medication to help reduce the pred. He mentioned Toc something. I’m on 4.5 mg and now using the Dead Slow Nearly Stop method. What’s important is not a relentless race to zero, but having as much as needed to control your condition. Over the 10 years I’ve had a few ups and downs but I’ve enjoyed a great life, perhaps at a bit slower pace than I’d expected. I’ve done some amazing things like travel to Antartica and the Arctic, but I also enjoy the small things like seeing squirrels in the garden. Yes, sometimes it can get very weary but don’t lose heart. This group has been an invaluable resource and source of support and I hope it is for you.

[PMRpro Ambassador in reply to Janet57]

Tocilizumab - but you won't get that in the UK! Who is that enlightened rheumy? He needs encouragement!

[Janet57 in reply to PMRpro]

Yes that’s the drug he mentioned and maybe it is offered in Scotland? He was definitely on the ball and I felt supported rather than scolded like the previous Rheumy for being overweight. His name is William McCuish. He did suggest I lose some weight but it was as done in a more sympathetic way and I am on a diet anyway.

[PMRpro Ambassador in reply to Janet57]

For GCA yes - but I doubt it is for PMR. What hospital is that?

[Janet57 in reply to PMRpro]

it’s Forth Valley Royal Hospital but I was seen at Stirling Community Hospital.

[PMRpro Ambassador in reply to Janet57]

That's a relief that central Scotland has someone decent. My daughter works at Forth Valley. Wonder how difficult it is to see him specifically since Scotland dictates more than England. Must be new - he doesn't exist!!!!

[MrsNails]

Far Too Long for me unfortunately - 10nhalf years……

[BettyE]

Don't lose heart. I had two bouts; first took three years to subside, second took five and I've now been PMR "free" for nearly ten years. My sister, like you, is currently in her fifth year. We were both lucky with our GPs who did not trot out the two years misinformation.

[Hollybee21]

12 yeas for me. On my second dose of Methotrexate so keeping my fingers crossed that it may help me reduce from 8 mgs.

[PMRpro Ambassador]

It was 13 years last July - I've had PMR symptoms for over 18 years now but the first 5 years was with not even a diagnosis never mind pred.

Six months ago I was at 19mg pred - I've just been trying 6mg but it was a bit hard on the adrenal function side, I took 7mg last night and feel rather better! But that is all only because I'm on tocilizumab/Actemra

[borednow]

5 years and counting. Down to 1.5 but just increased slightly as aches and pains slowly sneaking back. It thinks I haven't noticed but I'm on it!! So Harry, don't be sad, you're OK. It's not a race. I blame the Xmas movies, find a good who dunnit instead.

[scrambledegg]

6 years. Just slowly reducing from 8.5mg to 8mg pred. daily

[Evercurious]

little over 4 years, just tapered to 3 mg. Feeling good😁

[Purplecrow]

it’s 9 years for me. Holding at 7 mg.

[Suffererc]

5 years in January 2023. Now on 2/1.5.

It is easy to loose heart with all the pressure from GPs but this site makes up for it with advice and support

[pegpowell]

Almost 7 years for me. Currently on 2 mgs pred. Tried 1 1/2 for a day last week and decided not time yet.

[Longtimer]

Got PMR f or my 60th birthday 11 years ago.....told as usual 2 years and it will be gone, such rubbish!...Struggled since 7 mg, now on 5 mg with adrenal insuffiency.

[Purplegloss]

Just over five years and currently on 4.5mg, hoping to go down another .5mg fairly soon using DSNS method.

[SusanEleven]

I hit 5 years February 2022, so soon it will be 6 years. At 2mg. Rheumatologist and endocrinologist are fine if I need to be at that dose forever. No pressure to get to Club Zero.

[lesley2015]

Hi there,

I will be 8 years in june. Consultant thinks i will probably be on a low dose (5mg) for life.

I can live with this, I was on 80mgs a my worst ... ! Best wishes

[magmapearl3]

I was on it for 6 years and stuck to the DSNS method of reducing as recommended on this site. I eventually got down to 1mg and stayed there for about 9 months as it was controlling the symptoms. In the those 9 months the hardest part was figuring out if the symptoms I had were the PMR coming back or withdrawal from Pred. I've been off Pred now for nearly 3 yrs. Hang in there, don't despair and good luck !

[Harrywogan in reply to magmapearl3]

Thanks magmapear,gives me hope xx

[Hidden]

you’re not alone, the entire planet is watching Xmas movies with you. 🎅

[PMRpro Ambassador in reply to Hidden]

You speak for yourself I'd rather poke my eyes out! And it isn't even Advent yet ...

[bunnymom]

Will be 6 years in February. Currently at 3/2.5. Lots of arthritis pain roaring in. I’m going to be changing diet shortly hoping it will help inflammation. Makes me sad occasionally what I can’t do but I can still do plenty and have a good active life. This site saved me. My Dr admitted that getting off prednisone is difficult for us long time users. Amen to that I thought.

[SusanEleven in reply to bunnymom]

Yes! My arthritis has become a beast. Plus bursitis in my left hip arrived and seems determined to stay.

[MiniSpec]

It's been 12 years for me so far, and I'm hoping that by the end of 2023 I'll be off it altogether.

[67Blue]

Just to say good luck, and to say maybe there are some of us who can do it in two years. The rhumat. even gave me a thumbs up the only time I saw him and said we are on track. for 1 1/2 years. Whereas my dr told me at 7 mg pred I "had had GCA/PMG" when I said bearing in mind that I have GCA/PMG. The rhumat ignored the fact I said I got the shakes in the evening, even cutting a carrot is tricky and writing not very neat. The dr just said get off steroids, and last week the latest rhumy said it might be something else like Parkinsons. Great. But she did suggest B1 for the numb and tingling lips and tongue, thinking nerve damage. So I sit at 1 mg wondering if i should go for it and try to reduce and everything will magically disappear or come back to bite me. As people say one isn't much to sit on if you can get there.

[PMRCanada]

It will be 5 years for me next May. Managed to get down to 9mg without much problem, but then stuck there for about 18 months. Now on MTX and managed to get down to 6.5mg. Hoping to just get down to 5mg….fingers crossed.

[nuigini]

9 years for me next March. Hope to get down to 10 mg for the 3rd time by then.