It's been almost 3 years since first my PMR and then GCA diagnoses and like most of us here I have become more pragmatic about the 'speed' of tapering than I might ever have imagined at the outset - when it was probably (wishfully) going to be 'ME' that would have a relatively short duration of this whole disruptive 'performance'. From everything I have read and learned here in the interim I have come to recognise that this unpleasant 'party' is not nearly over yet despite the fact I feel quite a lot more like my 'old self' than I did say a year ago. So here I am finally relenting on a 0.5 mg addition to the 10.5 I have been taking for the last couple of months. While 11 mg seemed to 'work' just fine for three months previously obviously that last 'tiny taper' pushed the boundaries and the 'dripping tap' of inflammation has just kept creeping up. I was feeling prepared to grin and bear a bit of discomfort because at last my weight had dropped - my face looked more like 'me' and after all it HAD been '3 years' so surely I 'deserved' some amelioration ..... BUT after several weeks now of finding it hard (again) to turn over in bed at night - to raise my arms above my head when dressing and waking with neck and shoulders feeling like TWO 'elephants' had been sitting on them all night - I finally gave up and went back to 11 mg. Thing is I have improved a lot with that 'smidgeon' almost overnight - and although I still feel some discomfort it has diminished quite dramatically in just 24 hours !!
Thing is it seems quite hard to believe such a 'small' amount 'extra' of Pred can make SO much difference. I am not annoyed with myself that I waited so long to up my dose again as I really wanted the HARD 'evidence' that I was taking no more than I needed at any point - and now I have that - BUT *really* surely just half a tiny 1 mg tablet is such a 'small' amount !!! No real 'logic' from me here I know - just sheer surprise !
Anyway more importantly - I wish Everyone on HU a wonderful 'new decade' with many joyful things in store !
Best wishes
Rimmy
PS 'Chinensis' (Mutabilis) Roses - these hardly need Summer watering at all even in OZ !! - but like everything they have their 'limits' too !!
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Rimmy
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It does seem incredulous that such a tiny amount makes a difference, and I’m sure many doctors think the same, but “them of us” that have been there KNOW !
Also surprising how hardy Mother Nature can be too!
Yes I have read similar stories here myself - but you know we all think it will be 'different' for 'us' - well we are hopeful anyway - but I am 'learning' ... (LOL)
If I had a fiver for every post in the last 10 years saying something similar OH and I could go out for a pretty slap-up meal and no need to order the house wine!!!!!! I've written 2 or 3 myself ...
It is amazing Rimmy! The fact that half a tiny tablet can save you from what sounds like it was gearing up for a full blown flare. I have never really reduced more than by 0.5 since 10 mgs and I have learned the value of micro dosing too. I would have missed a number of perfect doses if I hadn’t done this too. Over the Christmas period I have risen to 5 mgs, with a heavy cold and the complete “on” you have to be at Christmas, through inner expectations and one very welcome “fruit of my womb” very blessedly present, most possibly the “ wrong foods” however, because I am allowed to feast, I don’t want to, I am pretty contrary and I think I have actually lost some weight. Even when having alcohol has seemed appropriate, my drink has been peach juice and a splash of sparkling wine and that seems perfectly adequate. I can’t really take it.
Your description of two elephants sitting on your shoulders is so evocative, that I do realise that I have come a long way in 2019. I am roughly a year longer than you from diagnosis. Still, I taper more slowly than the truly brave and determined. I just know it won’t work for me. I walk quite badly unless I really try, which I think will be necessary. My knees feel like sick sponges at times and defensive walking has become a habit. I think this is the residue of the disease and being more sedentary, allowing Osteoarthritis to take hold. My hope is that this year, I may at last come into the light and start the very necessary rehabilitation from this life altering disease. I hope that you can make real tangible progress too.
I love the Chinensis ( Mutabilis) Roses, I hope that we can become low maintenance too. Let us hope that this decade is a very special one, with the wise voices getting louder all the time. 🌸🌸🌸🕊🕊🕊
Sounds like you have pretty well 'figured out' your Pred management with great intelligence SJ - I like your 'micro-dosing' approach which makes perfect sense - I also like your 'contrariness'and the fact it has helped you lose weight. I am 'contrary' also but in most instances it doesn't involve avoiding food or a mindset which might help me do it more effectively - but I have at least learned to control my carb intake a little.
Looking forward to reading more of your posts next year and hearing that you are feeling better and better !
And yes , I agree , it seems crazy that such a small amount make such a big difference but that's the amazing , and often very frustrating , thing , not just about our Conditions but the incredibly fine , complicated and delicate balance of our Bodies as a whole.
You paid your dues in Pain by testing for boundaries and got your evidence , so now , you can take your increase with the reassurance that it's right , which always makes these decisions easier to bear.
And at least next time you won't have to suffer as long again before making the same decision to increase , so in some ways you can find a tiny silver lining in what you have been through because of the benefits you will get in dealing with dose changes from now on.
Plus , you will be back to PMR Normal to enjoy what I hope will be a very happy New Year celebration and Healthier year to come.
Hi Rimmy. I too have really struggled with a taper of 0.5mgs. Have been on 7 mgs for a year and cannot stick with 6.5mgs. Have tried several times to no avail. Have to say am most comfortable at 7.5mgs but this gives me chipmunk face whilst at 7mgs this reduces. Strange the impact of that 0.5mgs!
Have been tapering from 14 mg to 13 mg and flare up in my right hand thumb and index finger and middle finger. Just going to ride it out and see what happens. Lowest I have gotten before is 9 mg! Very frustrating and painful.
Terrific post. I was diagnosed March 2018 PMR ( 10 mg pred). Read diagnosed October 2018 GCA (60 mg pred). Tapered like a “pro” ( following your advice here, rested, ate well etc not without ups and downs, but thought I was going to be home free by 2 years) got to 13 , felt a bit of pain, kept going to 12 , not great , thought it was just reduction pain. When I went to 11 i knew I was in trouble. Back up to 35! ( still have mild head pain may need more 😱) So damn frustrating. ( and I did it to myself when I knew better!). Dr will put me on Actemra now ( when approved). Can’t believe it’s almost 2020, almost 2 years with this disease. This forum has been a wealth of information, and support. Thank you everyone ! Happy New Year, filled with love, laughter and good health. 🙏🏻
We generally do "know better" but there is always the double-bind of thinking/hoping that we may get away with just a wee bit 'less' - and we only really know for sure what the boundary is when we 'try' it out - so you are among 'good company'. The other thing is we can put up with a great deal before we 'relent' but it is important we remind ourselves about how important it is to reduce all that inflammation in our arteries - which is overall not 'good'.
But Rimmy. I was down to 12 ( no flares of course there was ups and downs). Now back up to 35! People go up and down by 2-5 !! think I’m on the way up to 40 or 50 now because my head is killing me. Right back at square one😭
That doesn't sound like an overshoot of the pred dose - it sounds like a revival of the disease activity and that does happen in the first 18-24 months of GCA. It happens to me with "only" PMR although it is likely it is large vessel vasculitis with me.
From pet scan and CT Scan LVV snd Gca are diagnosed. ( I don’t think they are 100% sure though!) was going to go through another Pet Scan once I was down to 10 but that has not happened!
I think I also may have LVV -though no scans to 'prove' it - and my first major GCA 'flare' was around the 18 month stage (as PMR pro describes) - when I had to go back up to 30 mg. Here at about the 3 year stage I now have no sign of renewed GCA symptoms just PMR ones as I described.
Don't despair aladymo - there are others here with GCA that have had to do similar when a 'flare' occurred and they needed to get symptoms under control. Once things settle down you will be able to taper again although it can be VERY frustrating to feel like you are 'starting again' - I've had to do that once myself so I do know how you feel especially when reading about what sound like 'trivial' frustrations with such minute reductions- but for many this is just another phase of this horrid disease. I just hope you feel better soon and that you have a doctor who is 'on the ball'.
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