Diagnosed with PMR October 2019 , moved to Cyprus in September 2022 . I am continually attempting to taper off pred and am currently alternating 5mg to 4.5mg . I have no symptoms , I can walk for miles ,have no fatigue and no aches anywhere . My problem is that as soon as I reach around 3mg all the issues with PMR resurface . I was wondering whether it is considered safe to carry on taking my current dosage for the rest of my life ( I am 68) , the only issue I have is with my forearms being prone to bruising/skin fragility . I have had several relapses in the past and wondered if it is even worth trying to lower my dosage as it doesn't work for me.
Pred for life: Diagnosed with PMR October 201... - PMRGCAuk
Pred for life
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Hampit54
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Professor Dasgupta told us a few years ago that he often keeps patients at 2-3mg as it reduces the incidence of relapses. If you repeatedly flare at a similar dose it is your body telling you you have reached your destination: the lowest effective dose, the dose above where you flare.
I've had PMR symptoms for over 18 years, been on pred for nearly 14 years and most of that at above 10mg. This time last year I was on nearly 20mg and struggling to reduce at all. There had been other factors involved but whatever the reason I needed a lot of pred. My rheumy had the option of using Actemra and using that I have got to 6mg - last time 6mg was a but too low bit this time it is looking more hopeful. He doesn't expect me to get below 5mg even with the Actemra. My years above 10mg are worth twice as many, probably 3 times as many, as you on 4mg. It has given me a reasonable life and allowed me to function.
You might still get lower, 3 1/2 years isn't long in the PMR world, 4 to 5 years is very common. But if you don't, it isn't the end of the world.
I’m exactly the same ,at 3mg everything goes pear shaped , I am now also on methotrexate injection 10mg once a week I really hoped that would get me off pred , but no just the same at 3mg , I’m currently sitting at 4mg thinking very much like you is this for life . My rheumy said long term he preferred I was on low dose MTX , but switching the 2 drugs around didn’t work and now I’m stuck on both as when I stopped the MTX for a few weeks even 4mg of pred didn’t stop the aches and pains .
Your rheumy might prefer the concept of long term MTX rather than 3mg pred. However, since the reality really is that experience suggests it isn't necessarily going to get you OFF pred, I'd prefer 3mg pred rather than both long term.
I wonder if the fact is that MTX is a bit like the tocilizumab effect where half of patients get off pred entirely because it only works for one of the potential causes of the inflammation. It will be interesting to see the results of Prof Mackie's study on MTX - if I live long enough to see the results!
interested in the tocilizumab effect. For those 50% who can successfully come off Pred how many have to remain on tocilizumab long term?
No idea to be honest. The long term studies in GCA are ongoing, There are none in PMR since it isn't approved for use there. Some certainly get off pred and TCZ in the short term, I don't know what the relapse rate is and in the UK it is immaterial anyway, you only get a year.
I do have other issues with SAPHO which is doing some strange things to my bones, so not sure if just the pred a lone would control my disease . Rheumy thinks not , I was getting progressively worse with regards to arthritic symptoms the MTX does appear to be controlling that , for now anyway . 🤞
Which is the idea - I don't mind the concept of a combo it it works better but for a lot of PMR patients MTX is held out as a replacement for pred. If you are stuck at a high pred dose that is fair enough but if you are down IRO 5mg or less - I don't see the justification.
I too was put on MTX as I was stuck at 9mg for over 1.5 years (flared 4 times trying to lower to 8.5 during that time period). I managed to get down to 6.5mg pred last fall but then multiple losses of family members, combined with diverticulitis flares and chest infections over the winter caused me to go up to 7.5 pred. During that time I was on 25mg MTX. When I had to stop MTX while on antibiotics for two weeks, the 3rd week without it symptoms came back.
Since March I’ve lowered my MTX to 15mg a week and my pred is at 6.5mg, I’m about to taper down to 6 which tells me I can achieve this dose of pred with less MTX. I’d really like to get down to 5mg pred and re-evaluate. My rheumy is ok if I want to lower my MTX dose or get off of it all together, but like you I fear I will have to increase my pred dose if I do. I’d certainly rather not be on both medications.
I have got down to 3mg 4 times and each time get a massive flair. I’m now on 5mg and plan to stay there for a year and maybe try again. Better to be stable than having to constantly go up and down I think. Good luck.
I would just try and be more patient (hard I know) but wait a while then try reduce by 0.5 again. Personally I wouldn't give up trying.
I had a major flare at 1mg, but had gone down fast at consultants insistence. My doctor put me to 2mg, but then I got a lot of the symptoms of adrenal insufficiency, and a doctor advised 5mg for 7 days, then drop to 2mg & taper slower. Just dropping back to 2mg today!
Hope all goes well with the 2mg Pixix. 👍
Rhanjs! I have a doctors appointment on Monday, so will be interesting to see how I am by then. Going on holiday on 10th, so will be asking him if OK to increase while away. First ‘real’ holiday since 2019….first two weeks away, & first overseas (travel was one of our main hobbies!) Off to the Dordogne, rented a house a car, lots of fresh air after travelling in FFP2 masks the whole journey! Flying from small local airport to small French airport. After last five weeks of sickness I’m not looking forward to it, have no energy & panicking, but we will get there, hopefully! Hope you’re coping OK, S xx
Chin up, your natural positivity will help to see you through this difficult time. I can understand your apprehension about the holiday but it sounds lovely and just the boost that you and your husband need. Hope the doctors appointment goes well on Monday.
Thank you, heart meds. not agreeing with me (affecting mobility) so will need to be adjusted. 😊
oh, no, sorry to hear that. Certain heart meds seem to cause problems with some people. David was on Triapin, a drug containing two drugs, but they stopped making it, so now he’s on ramipril (wondering if it’s making his asthma cough worse) plus two other heart pills! I hope they find one to suit you, don’t settle for less! I think it will be fine. I drove 3 weeks round Colorado four summers ago, then 3 weeks in southern florida, & didn’t think about it at all! Thanks for your support, S xx
A dry cough is a possible side effect of Ramipril, I had it at first but it seems to have improved. Yes, my health has deteriorated so much in the past three years, it is difficult to accept. I had my first CBT appointment yesterday, hoping that it will help me to adapt to my new reality. Your good wishes are much appreciated. Hope you are OK following your reduction.
Hope your appointment goes well, & yes, I fully understand being unable to accept your changes in health. I also hope your QOL improves, sadly it may be through drugs, but sometimes we need to accept them if they bring an improvement!
Just to say, Pixix, I do appreciate what you mean about not looking forward to going away, after such a long time. I feel similarly, especially since I have felt particularly unwell of late. I have various sojourns on the books this year and am now beginning to feel rather nervous about them. I'm tempted to cancel and stay home BUT I know that's not a good idea. Now have a plan: more blood tests and a second opinion lined up from a (recommended from this forum) rheumy.
All that said, your holiday sounds ace and I feel sure you'll be glad to be there and will enjoy it. Start packing a few things on a daily basis, if you can. Let us know how you get on, too😊
I’ve been so sick the past two weeks with adrenal insufficiency…but then today I walked 2 miles with the dog, had a picnic, driven home. Not bad. But from tonight I’m back to 2mg, as per doctors orders. Wish I had a couple more weeks in hand! Had to cancel visit to relatives in Cheltenham & long weekend to Wales. Good luck with your appointment. I think the higher doses (5 & above for me) make me anxious..not something I usually suffer from! Apparently I get rather bossy, too!!!!! Time will tell! Not a good idea to cancel your sojourns, they’re good for you, really! S x
Well, sounds like going upto 5 mg has really helped then. It's a shame you can't stay on that dose a bit longer but then you wouldn't be able to drop down to 2 mg so easily, I guess. What a complicated thing PMR can be. After all, anxiety and bossiness aren't two attributes you particularly want either! Shame you had to cancel visits to Cheltenham and Wales. I've just told friends I won't be able to go with them to Sicily this year - just feel I can't risk it. 😒 I am, however, going for a couple of days to Blakeney on the North Norfolk coast this w/e, though even that feels like an effort at the moment....Wish we could just be whisked away in a Time Machine🤣 Wishing you good luck with your reduction tonight...
That’s the problem! I’ve been back up to 5mg twice now, first time made it to 3mg before trouble brewed, second time to 1mg…but trouble already brewing by then! Oh, we love Sicily, & may go over for a week in September…depends on how well this holiday goes!! Ve never been to Blakeney, but seen photos, it’s very pretty, & lovely birdwatching. We’ve just been sitting watching Mr & Mrs Blue Tit feed their new babies…yesterday it was Great Tits…tomorrow it may be the bossy Starlings from the gutter next door!! Thanks, & I’m sad you’re missing Sicily…so beautiful!
I've never made it to Sicily - would love to go but it won't be in summer!
oh, no…first two weeks in October are our fave. Or mid spring. Fascinating place! Though I did help organise a global sales conference in Taormina once, & it was end July..but mainly indoors with aircon, & afternoons in pool!
Funnily enough, my friends are aiming to go in early October so they've obviously chosen a good time. Your and PMRpro's replies above are making me think I might have missed out🤔 There have been quite a few programmes on the Beeb recently about Sicily...
We love Italy & have had numerous holidays in all regions! We had the first two weeks in October in Sicily…both our birthdays fall in the first week, two days apart. I loved the fact that it was warm enough to all through the streets after dinner (with a gelato!!) & the ships all open. Lovely atmosphere, & such friendly people! S x
Sounds idyllic, Pixix. Warm Mediterranean sun -mmm🌴 One can but dream! Hope you feeling alright today on your 2 mg.🤞
it is! No, sadly, everything creeping back again…hit & cold head sweats, worsening brain fog, & h & shoulder pains so far! Must be very sensitive, only one lower dose so far! Yikes!
What a pain - literally. Do keep us posted as to how you fare.
Sorry you are going through this, just horrible for you. Sending you lots of gentle hugs.🌷
Thanks…it’s life, & inevitable as I reduce, however slowly, it seems! S x
I love watching the birds too. Those feisty starlings must be the noisiest with all their squawking. I was pleased to see the Robin feeding its young yesterday. Hoping the blackbirds have young too. The photo is from last year.
Blackbird collecting food for its young.
Delightful! They manage to stuff so much in their beaks & humans would be tempted to eat it themselves!! Here’s one of yesterdays newly fledged blue tits to help you smile…
Baby blue tit
What a beautiful photo, such a sweet baby. Yes, great parenting, they work tirelessly don’t they. So fortunate to be able to observe them, it’s a great distraction too. One of life’s pleasures, it enhances QOL.😊
Lovely photos, both. I have never been much of a bird person (!) but I find, as I get older, I am becoming more so...Don't blackbirds sing loudly! We have one that makes a beautiful sound, at top voice.
Another observation, I remember my mother sitting in a chair in her 'sun room' (that's what she called it though it's hardly that!), watching the birds and laughing at them and their antics. I never understood why and must admit to being somewhat bemused. Guess who does precisely that now! I have become my mother, sitting in the same place, watching the birds and laughing at what they get up to😊
They do have a lovely song, which I understand is to defend their territory.
My parents put food and water out for the birds and I have always done the same. I am constantly refilling the feeders at this time of year and I put apple out for the blackbirds.
I’m glad you are now able to find pleasure in watching them, laughter is so good for us.
I fully agree! We have 50 different species of bird in our garden, we listed them one day, then added new ones as we spotted them! Number 51 will be red kite, I think, he’s getting nearer, but don’t want him to land & feed!! The forest helps, too, & brings calm & peace, & watching the foals, too! I will risk one more photo…a day old baby donkey we saw yesterday, or we may get told off for too much ‘off piste’!! Enjoy!
Day old baby donkey
Do you take part in the RSPB yearly birdwatch? Hopefully the Kite won’t frighten away the other birds, I haven’t seen one but have seen what I think is a Kestrel. It swooped down into the garden and took a small bird, the whole thing was over in seconds. I understand that it’s all part of ‘the natural world’ but sad to watch all the same. Being in the forest is great therapy, I can remember feeling ‘at home’ there. The baby donkey is adorable, hard to believe it’s only one day old. 😊
Are you sure it wasn’t a sparrow hawk -they are more likely to take garden birds rather than a kestrel…
No not sure at all, it all happened so quickly. I looked in my bird book straight away and thought it looked like a kestrel. Could easily have been a sparrow hawk. I will have a look in my book and compare, much appreciated.🦅
Yes, the buzzards nest in the woods behind our garden…& the noisy crows! We get Ospreys in the forest now, & a web cam is set up on their nest & babies have emerged! Plus sea eagles, which are massive…they fly over from the Isle of Wight, where they were reintroduced some years ago, I believe! Had a baby great tit fly through my hair & nearly crash land in the hedge this afternoon. They really don’t have the idea quite right yet! Made me jump! S x
A bird watchers paradise. Can imagine what the the great tit parents were thinking, watching from afar.
They were making a lot of noise!! Be downloaded an app on my iPad & phone…you simply press a button & it records the bird sounds around you & tell you what soecues of bird is singing! We discovered we have a Blackcap in the woods (& then saw him), it’s a good way for us to learn the different sounds, too!
Thanks for the info. about the app. I am going to get it if I can. Technology can be a wonderful thing. I’m enjoying watching the blue tits on the fat filled coconut shells. Do you ever see thrushes? I very rarely see them now, although I do put special seed out in the hope of attracting some. Many years ago we often saw them in the garden, they would find snails under the lavender bushes and we would hear them cracking them open on the path.
The one we use is Merlin bird ID, & it’s free! Actually, we saw a thrush two days ago, & haven’t seen one for a couple of months. Two years ago they had a nest in our hedge, but once they flew the nest they just disappeared, very strange. Afternoon before they were making such a noise. We hoped nothing bad had happened but will never know. Yes, they are snail cracking experts!
Yes, I did take part. Some years we have a huge amount of birds, & I wonder if anybody would think I’m just making it up, tbh! With woods on two sides of our garden we have perfect shelter, & in the garden we have a huge shrub & a long box hedge the birds go into to be safe. We get both the Kestrel & the Sparrowhawk, both beautiful to see, but deadly, most times our birds escape, but we lost 2 in early Spring, when they come more often. This time of year we rarely see them as there’s plenty of food elsewhere. I’m always sad, but nature is what it is! Sparrowhawk is larger than Kestrel, & grey with white..but it happens so fast sometimes you only see a flash. The sparrowhawk caught a pigeon here & tried to eat it under the hedge, but then flew off when we came out, but too late to save the pigeon. The kite stays very high in the air, as do the buzzards…amazing size & wingspan. Yes, the donkey was still wobbly on its feet…they fill out quickly, but are amazingly quick to walk, as are the foals. They both lie down & sleep for a lot of the day at that age, though!
Sounds like an ideal habitat for them. If my memory serves me I think it was quite small with lightish coloured feathers. Amazing that you are able to see buzzards, it hadn’t even occurred to me that we had them here. I suppose it’s in their best interest to walk as quickly as possible, otherwise they would be extremely vulnerable. I remember watching a programme about wildebeest and being surprised at how quickly the new born were able to stand on their wobbly legs. I have to admit that lying down for most of the day could be quite appealing from time to time. 😄
My story is similar to yours, but I did finally break through what was a barrier. Diagnosed in April 2019. Started on Prednisone at 20mg and tapered down over 22 weeks to 5mg . On 5 mg since mid Oct 2019. After a two unsuccessful tries, finally made it down to 3.5mg as at 3-Apr-23. I have been on 3mg for the month of May with no issues. I'll begin a DSNS taper to 2.5 mg in June. I thought the bruising would stop once I got below 4mg, but no such luck. I don't even know why I thought the bruising might stop, maybe just wishful thinking. 😜
I haven't got PMR, Hampit54, I've got another autoimmune condition, but I'm the same age as you and I'm currently alternating between 5mg and 4mg (have had one failed attempt at 4mg). My rheumy reckons that I'll be on Pred for life, and he says he's relaxed about that as long as I can keep below 5mg. He still wants me to try to reduce though. I hope that you manage to get past that 3mg barrier eventually.
As it is nearly always time limited if you dont try to reduce, at some stage you will be taking pred for nothing. Best to keep that as ultimate goal but do a comfortable taper, sticking in happy places for a good while.
I was the same I got to 3mg and it all flared up again... so I have been on a maintenance dose of 4 mg for many years now and feel fab..its all about quality of life and this was my decision and I quite understand that it might not be many of other people's choice ...
One of the GP at the practice told me 5mg or less doesn’t cause ‘permanent damage’.
Not entirely true judging by more recent work - but if he thinks so take it and run!!!!
My experience is 2mg for me currently with weekly injection after many attempts.. so be it.
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