Greetings to all PolyMyLingerers and Pred Playmates here.
Just a quick update in case any of you can't sleep at night and / or are Bonkers enough to follow my Ramblings...
Ok ok OK!! So, I posted here a couple of weeks ago about my seemingly ambitious (reckless?) 'jumping-off-of-the-edge' of the Pred tapering ski-slope by reducing from 4mgpd to Zero over a 24 hour period. In mitigation, I didn't plan it that way - I simply, and cautiously extended the dosage periodicity by 12, and then 24 hours at a time to see what the effects might be (+/-), and was surprised (nay, astonished) not to have any nasty feedback symptoms-wise at each progressive interval. In fact, I felt slightly better having stopped the Preds, albeit abruptly. So, I have continued at Zero Pred for nearly 3 weeks, and all is good, on balance. Maybe I'm one of the Lucky Ones as regards accelerating Pred tapering.. who knows?
Before you say it: the above approach is NOT recommended for all sorts of reasons - and it flies in the face of the very good advice from the Experts here about Slow and Gradual steroid tapering - even at low dosages (e.g. < 4, or even 2 to 1 mgpd). DSNS Rules...
That said, I've joined (for now, at least) the Elusive PCZ (Pred Club Zero). 'Congratulations!', you might say (and some of you already have - thanks!). But, on reflection, I realise that the ambition to acquire membership of PCZ is probably as much symbolic / perceptual as actual - and isn't always matched by the reality.
By this, I know that so many of Us Lot naturally hope (or pray?) not only to recover from PMR and / or GCA: but also to be able to celebrate no longer being, or seeming to be dependent on the powerful drugs (usually Preds) that manage the symptoms.
In reality, my 3-week membership of PCZ has been ok, overall. I've done as much physically as I normally do (Action-Man type stuff), albeit with some niggling Bursitis (?) in my left hip (Ouch!) and ribs - and some Fatigue - although not the Deathly type. Recent blood tests (ESR / CRP / Thyroid etc) came back as all 'Normal' - Wow! But, even though I still don't feel 100% 'Normal', this is encouraging psychologically, at least.
So, my (amateur) Conclusion?
Try not to see PCZ (Pred Club Zero) as the Ultimate Goal / Prize in getting through PMR and / or GCA - however tempting it might be. With long and Chronic illnesses like ours, this is only a stepping stone to (a hopefully eventual) recovery / remission. As the PMR / GCA Aunties / experts will probably say, even at PCZ there can still be some-way to go in terms of getting back to 'Normal' (whatever that means!). That takes more time still.. possibly 12 months at best, and comes with no guarantees.
And, of course, many of Us Lot have aged by at least a couple of years in the meantime - and at a Time in Life when we might naturally also be 'slowing-down' a bit, both in terms of our physical and mental / emotional energy and resources (sorry!)? Perhaps that's the paradoxical bit of the Ageing Equation that we (me included) might not want to acknowledge in the context of PMR / GCA, or any other co-existing health conditions?
All the same, we perhaps should try to build the above into our perceptions and expectations of our overall Health / Fitness equation and prospects, in Context? A healthy sense of Denial can be a good thing (Story of my Life - Ha!). But an unhealthy sense of Denial / perception of Reality might just trip-us-up somewhere down the line.
This was my 'LightBulb' moment today. Yes, I feel fortunate to have survived my PMR Journey - 'Shaken but not Stirred', as James Bond would say. At the same time, (unlike the fictional Bond), I realise that am not Immortal / Invincible - and I am not age 36 any more (stop laughing please - Teddy gets upset when I am ridiculed..).
Now, CONFESSION TIME:
Despite being a (new) member of PCZ and having had 'Normal' Blood test results, I felt pretty ragged with continuing Hip and Rib pain (probably some residual Bursitis / still-active PMR inflammation?) yesterday and limping about like an 'Old Man' (ha - what, Me?!).
So, I temporarily (for one day) reneged on my PCZ membership and popped 2 mg of THE PRED down my throat. And, Hey Presto, almost instant relief (i.e. within an hour) from the debilitating pain and stiffness.
As a result, I hold my hand up as a PMR / Pred Double Agent and with a size 10 foot in both Camps (no jokes please, Aunties). Yes, my Loyalties are simultaneously to the Pred Cub AND Pred Club Zero - day by day, and with cautious optimism. The term 'Bi-Partisan' comes to mind..? ;-). We'll see...
As always, try to keep smiling on the Journey..
'Uncle' MB
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markbenjamin57
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Good update, thanks Mark. I do like the comment about not seeing PCZ as the ultimate goal - a very nice part of getting better - but not the actual outcome in the long run. I guess we have all lived with the consequences of pred and the bad bits tend to stick in our minds. I like the way you are managing it - works for you and that is great information to have for the rest of us to use if it suits.
Well, with hindsight, I had / will continue to have to experience provisional / part-time membership of PCZ to know if it suits me! I agree about the bad bits, they do make one a bit cautious about whether or not we can get there at all.
As DL suggests, maybe I'll keep an open mind and alternate a very small daily dose, e.g. 1 or 2 mg every other day, depending on symptoms and / or extra 'load'. As usual, it can still seem to be a case of Trial and Error with the Preds even at a theoretical PCZ until or unless the PMR has gone completely into remission - which can take some time.
Glad this was useful and hope it helps a few others of You / Us Lot!
Thanks for the very useful summary and for reminding us that it really is ok to get a little help now and then and not be too stubborn to accept it. 2 mg Pred would not have worked if the pain was not PMR related, so at least you know it was the real deal. I bet you made the rookie mistake of doing too much - PMR loves that. Onward and upward good man!
I think I held my breath the whole time I read your post. There it was. 2 mg.. curious if you attempted nsaid or Tylenol before. 3 weeks! You’ve done quite well. Onward & upward. I want you to be in that club...when I join it!
Hi Cassie. Well, I did try a large (300mg) dose of Aspirin one night when the Hip pain was keeping me awake. It worked well, but then I concluded that the pain might be PMR inflammation-related - so it was back to a small 'shot' of Preds and that seems to have got it under control.
So, On and Forwards (or is it sideways / zig zag / lurching..)
so glad you acted on your pain and got relief quickly as being a martyr is not in the club zero manual 😲😂 I've just had my third week of being in the club and so far so good apart from some aches and pains that I didn't have before GCA hit home 3 yrs ago. (well am 3yrs older 😲) me and my Aloe Vera are great friends...lol..sending loads of good wishes on your continuing club zero journey.
Agree that at first, even with all the experience we’ve gained over the years, it’s sometimes difficult to ‘know” on the Pred free journey what pain is what! But glad to hear you did the sensible thing (some might say for once 😳) and tried the demon drug.
Like Jane, I would say the euphoria of stopping Pred maybe gave you a false sense of security and you overdid things - nice drop of sunshine has that effect - ask Bill! Plus your PMR is very nearly gone - enough to give you a few weeks of respite - but not quite! A few more weeks and you might have found your bloods increasing again as well.
Just put your sensible head on, and maybe think it through it again - surely a very low dose, maybe 1mg a day or alternate days will be enough to get you through.
As we’re always saying, “don’t spoil the ship for a ha’porth of tar”, remember “the tortoise and the hare” - blah, blah, blah! FOR A REASON!
Club Zero will still be waiting for you, and as you rightly say - it’s not necessarily the end point, just another staging post!
Thanks DL, although you of-all know that the word 'sensible' isn't always part of my vocabulary :-D.
I'm sure you're right - maybe the PMR has got bored with pestering me and decided to retreat. Also, yep, possibly a bit of overdoing things let it back in? So, I agree: part-time / alternate day membership of PCZ for now. Slowly does it still...
Thank you Grants. Well, I usually try to inject a bit of humour into my ramblings - if only to help myself see the funny / ironic side of these things!
This is very helpful information to have especially with your insight added. No one tells us how to manage all this do they? With the great fear that pred has instilled in Drs one would think they would give us more teaching on how to hand side effects, how to recognize withdrawal etc. That particular lack of help from them still baffles me, so to have this information here for all of us is invaluable as are the various reduction plans. Thanks and carry on (reasonably of course 😄)
I think the bottom line on how Doctors answer (or not!) the 'How to handle the side-effects / Fatigue with PMR and / or Pred reductions etc' is that many of them simply don't know. Or, if they do, some (I stress, Some) don't want to commit themselves professionally on what is a very complex subject medically - and with the potential legal liabilities if they give what's seen or proved to be 'bad' advice. The words 'Back' and 'Cover' come to mind....?
So, my instincts tell me that, for some GPs, 'No Comment' is safer than venturing any kind of opinion on the above. And also, since PMR and GCA aren't Life threatening illnesses, it probably goes down their list of priorities too?
For me at least, this is why this community is so valuable as a source of collective experiences, wisdom and support.
I have used it. It seemed to help me reduce last year when I was going from 2.5 to 1.5. I think it helps with pred withdrawal. It almost certainly has no effect on the PMR itself as when I dropped my dose a little too low, although cautiously, I still flared. I have been taking it again, but going to stop for a while and see what happens as it's expensive, and I'm going to be travelling so don't want to lug a large glass bottle around for a couple of weeks. I only take the organic, no additives except a little citric acid.
hi there just wanted to say that I should have explained myself a little better regarding the Aloe Vera comment..I use Aloe Vera cold gel for pain I get in area's. Recently have had some in right shoulder and back last November had terrible pain every morning in my knees on waking but found then Aloe Vera and it worked for me.Have continued using it ever since as and when needed. Not ever taken it Italy so can't comment there.The pain in my knees started when I was getting lower in my tapering.
We've used topical aloe vera, mostly family members who get sunburned, not me, usually In fact my daughter had a plant for a while which she used to raid if she scorched herself in the kitchen. Is your knee pain osteoarthritis?
hi there..don't know if knee pain is osteoarthritis only that using the AV gel gave instant relief made life normal. Still convinced that it came in with a vengeance (knee pain) when I was tapering down from 3mg - 2mg (think) really low dose but once I finally hit 2mg-1mg no more knee pains. Had trouble with pain un right shoulder until recently but that seems to have disappeared at moment. We also have an AV plant growing in the window but not cut into it yet..when we've been staying with family who live abroad my sons partner has cut up plant from their garden she put it on my husbands very bad sunburn...did the trick 😲
Your comment about different symptoms at different doses is interesting. I've found that, too. Things occur at the lower doses which weren't an issue at higher ones - my rickety upper arms for example. Let's hope at some point in the next few months or so, sooner rather than later, we can achieve that goal of zero pred and watch our bodies spring slowly back into shape. 🏃♀️
yes totally agree about side effects at lower doses.The thing that got me was that I really wasn't expecting the pain to be that bad and as for the constant fatigue it didn't leave till about 1mg 😲 but I still get tired quickly and need to take naps etc but I already was expecting this to continue for at least maybe a year after coming off Pred so no surprise there...it's the end of my 3rd week in club zero and all's good at moment...hope that your rickety upper arms will soon cease to be a problem for you.
As a PMR newbie still enjoying my Pred honeymoon (first taper today), it's great to read about others approaching Club zero and your posts always raise a smile. This site is such a fab resource and everyone's stories are so useful in helping to manage my expectations about the journey ahead. Here's hoping you don't have to be a double agent for too long and your body decides Club Zero is the way to go......
Thanks for getting involved here. Yes, it's an absolute Goldmine of expertise, wisdom and support at all sorts of levels - and not forgetting quite a bit of silly fun at times! I plead Guilty as Charged, M'lud
I'm sure that input from the constant trickle of Newbies like you reminds many of Us Lot of PMR / GCA veterans of our early days with these nasty and confusing illnesses, and all the things we, too, DIDN'T know or understand at the beginning - and / or (some of) our GPs or even Rheumies didn't tell us about the Journey ahead. Hey Ho..!
I think you've hit the nail on the head about (the importance of?) having realistic expectations of your PMR Journey and all that goes with it. Not necessarily pessimistic or optimistic - just balanced, and in your own personal and health context. From experience, this can help a lot in the coping / survival process as much as the medical one.
As for being a PMR / Pred Double Agent? Actually I quite enjoy it - it keeps That other Lot (who shall be nameless) here guessing
Please keep us all posted on your progress, fingers crossed for you on your PMR Journey.
Thanks Jackie. To be honest, I'm not sure that Club Zero is necessarily the BIG Prize (although of course, it's a nice Goal to aim for). Perhaps it's more about doing the Journey as comfortably, and with as little hassle as possible - wherever we are on it..?
Wise words from our double agent 😉 good to read your update and glad you have that PMR back under control. Keep up the nonsense. So many of us enjoy it.
Sorry, I probably wasn't very clear about the current periodicity of Preds. After approx. 3 weeks at Club Zero but with some increasing, niggly Hip pain (inflammation / Bursitis?), I took a couple of mgs on one day to see if it helped, and it did. So, since then I've been experimenting with advised 'lowest dose that manages the symptoms' - and for now, at least, it seems that a level of around 1 mgpd / 2 mg every other day does the trick at the moment. Hence the Double Agent bit!
That said, and as many of Us Lot know, at any level of Preds, it can be very much a case of Trial and Error to get the dosage 'right'. And of course, what's 'right' seems to depend on so many variables in the process: including the course / possible oscillation of disease activity itself (+/-) at any time (i.e. heterogeneity?) combined with other factors which can influence it - including any or all of over-activity in the PMR context / viruses (e.g. the Flu), infections, injury, excessive Stress, co-morbidities, the weather, etc.
That's my best shot at trying to make sense of the often imprecise and confusing Art and Science of Pred tapering! And, of course, there's the old wisdom that Symptoms Rule - just as a check and balance.
Yes Mark, I'm with you there. PMR is capricious indeed with its oscillation activity. I think that's what frustrates me most of all. At. 4.5mg now, which is where I was 9 months ago.
As you say "onwards and upwards".
Keep posting as it will give me some indication of what to expect.
Paddy, if it's any consolation, I remember being 'stuck' at about 6mgpd for several months from late 2016 until early last year. Sorry this is a bit long-winded and I don't know if the following will help or simply confuse the daylights out of you or others following this thread (!).
But here goes, for better or worse...
You might remember my posting (in late May 2017, I think) about getting totally fed-up at not being able to reduce further: and so 'upping' the Preds to 7.5 to give myself a break / see if it made any difference (the usual best advice). Result? Felt WORSE at the higher dose - woozy, dizzy, nauseous etc. on top of the usual PMR stuff. Even more fed-up
So, after a week at 7.5 I had a 'S*d This for a Game of Soldiers' moment (not untypical of me) and decided to ignore the best advice here (Note: Not Recommended!) and defiantly dropped overnight to 5mgpd (a, whopping 33%) to see how THAT would be. Result? Felt marvellous for about a month at 5mgpd - virtually zero symptoms, loads of energy, feeling mentally and physically better than I could remember during more than 2 years of PMR.
The verdict from The Aunties and others here about this paradox was that the PMR might have settled down a bit of its own accord and / or the higher dosage (7.5) had given the struggling (at 6mgpd) Adrenals a bit of a rest, and they were open for business again. Either way, the difference was truly astonishing.
Since then, more of the same unpredictable, Snakes & Ladders Dose/Symptoms pattern month by month until the latest revelatory contradiction (4 to zero-ish almost overnight and feeling ok - again, Do Not Try This at Home!). But I've learned that it's the (much) Bigger Picture that we should try to observe, i.e. even if stuck at a level (higher or lower) for some months, most of us will probably get another positive break at some stage - and when / if the PMR disease activity decides to abate.
I agree Paddy, PMR is such a confusing and unpredictable illness, with so many variable / influencing factors that can determine its course, severity of symptoms and timescale to go into remission despite our best efforts to manage (control?) it / them. From experience, I'm certain that the Psychological challenges in dealing with such long-term unpredictability are as significant as the Physiological ones. I.e. 'being 'stuck' at any level of Preds for several months can be pretty disheartening - and also challenge our Hopes for some kind of recovery, sometime. But, for many of Us PMR GCA Lot, 'recovery' is indeed a long, slow, strategic game which takes massive reserves of patience and endurance, and a steady head.
That's my Take on things anyway - and why I always encourage Us Lot to try to keep smiling on the PMR GCA Journey, somehow. A few Grins and some Laughter won't fix anything medically, but it can make the Journey a bit more bearable at least...
Finally: if you haven't nodded-off reading this, you deserve a Medal
Well yes, I can certainly understand your frustration , and why you took the action you did. Clearly, you've done yourself no harm, and seemingly quite a bit of good!
I just checked my steroid record book, and note that it took me less than six months to get from 30mg to 10mg, but then the best part of three years to get to 4.5mg. As the "aunties" have said, the last part of tapering is definitely the most difficult. Currently, I seem to be doing seven to eight weeks at each level, and then coming down by a half, but I don't really have the confidence it will work. Yesterday was a nauseous day, which happens about once a month, so today has to be a day of rest - you know the feeling.
Having said all that, I still get on the squash court once a week, and bell ring three times a week, plus a daily half hour walk with the dog, so there is not much to complain about.
I think the worst is the sheer unpredictability of PMR, and that Is the one thing the doctors don't seem to understand. At least, however, I have no issues with my GP.
A bit of a ramble, but there we go. Hope all goes ok for you.
Well, that sounds quite typical and not unlike my Pred journey. It's good to know that you still get on the squash court regularly, especially with PMR! I played until my mid 50's and always enjoyed it, but I think I'd struggle nowadays.
Your 7- 8 week stints seem sensible with a half mg drop each time if it works for you, but it reminded me that a standard half mg becomes a larger percentage drop as you get lower. If my maths is correct, 8 to 7.5 = approx 7% reduction (within the recommended max 10% each time) but 5 to 4.5 = approx 18% (almost double the recommended 10%) and so on. This could be where some people have problems, and where DSNS comes in handy?
That said, I seem to have managed to buck the system.. for now at least!
Hi Mark, loved your update - interesting and different “take” on tapering. :). I have PMR and GCa. Have just tapered down to 20mg from 25 and, for the first time had breakthrough “original” pain in hips/thighs. So took two extra mgs last night. Helped a bit (ie managed to sleep) but not gone. Am swithering today whether to go back up to 25mg (:/) or try to go on with 22mg, or 20mg. Have GP follow up this week and feel I SHOULD be seen to have come down - more for his benefit than mine I suppose! I know this is not how we ought to think, - any tips on convincing myself he is not the important one! . It is hard because right from the start we feel pressured to “get off” the Prednisolone!. So glad for you having got down so low and If you have to go slower then am sure you will, no point suffering when you don’t have to. Good luck x
Yep, some GPs (and Rheumies) seem fixated on getting their patients off of the Preds as rapidly as possible, and according to a standard, periodic 'step-down' tapering regimen; i.e. 'reduce by x mg per day every month' to Zero. But this approach doesn't allow for the currently recommended maximum reduction of 10% per interval (e.g. monthly) - which takes a bit of number crunching and mixing daily dosages / tablet sizes / splitting tabs.. (sorry if you know this stuff already..)
So, for example, even a reduction from 25 to 20 in one go (5mg) = 20% (if my maths is correct) is already greater than the recommended 10%. And the same reduction (5mg) from, say, 20 to 15 mgpd = 33%. This seems to be where some patients run into problems, i.e. too much / too fast / too often.
And yes, the above can put patients under pressure to reduce more quickly / by greater amounts of Pred than they feel comfortable with in terms of symptoms (Symptoms Rule). Been there and got the T shirt! This is where DSNS (or its equivalents) comes in, to at least reduce the risk of withdrawal symptoms and / or the severity of them. With GCA, there is extra need for caution with the 'too much / too fast' tapering equation, as I'm sure you are aware.
That said, I can only speak from experience. The Aunties here (e.g. PMRpro, DorsetLady. jinasc etc) are the experts to consult with about these things: and / or it might be an idea to dig around on the forum for some research studies and current Guidelines around the 'maximum 10%-at-a-time' tapering protocol which your GP might not know about or have reasons to push back against if, for example, you have other known risk factors at relatively high dosages of Pred. But this is complicated territory medically, so I won't speculate on what's best for you in context!
Either way, hope this is helpful and try to keep smiling on the Journey
Thanks for that Mark. My GP as early as diagnostic appointment said about getting of the Pred quickly, and am meant to be dropping at 5mg each time 😧 - clearly this is not ideal, and now proved itself to be a problem this week! In fact the Rheumarogist even saw the recommend taper and said “just continue on the taper :/) - he prescribed Leflunomide for me at that appointment too - Cushings and diabetic symptoms been severe). Anyhow I will discuss with him this week about tapering more slowly - and maybe not go down so much when my inflammaton markets are staying the same and even rising - which they have been! Thanks for your reply, hope things continue positively for you x
No worry Hev, all part of the service ;-). Keep a steady head and try to put your case calmly to your GP / Rheumy - and armed with some of the very sound info about Pred tapering from here?
If your inflammation levels are rising - and you have PMR - then you aren't on enough pred. End of.
"My GP as early as diagnostic appointment said about getting of the Pred quickly"
He can want you off pred quickly all he likes - PMR sets the rules and as long as the underlying cause (an autoimmune disorder) is active, there will be inflammation and you will need pred.
PMR has a median duration of 5.9 years and a minimum of IRO 2 years. 5% have PMR for life.
You are never reducing relentlessly to zero - you are looking for the lowest dose that manages the inflammation as well as the starting dose did. This is a CHRONIC disorder. You don't take a short course of pred and that's it done - it is a long term condition. Ask him if he would wean his patients with RA off their DMARDs. Pred is our DMARD - we need it as long as we need it.
Thanks PMRPro - it is frustrating but they just don’t seem to think that way :/ I will point out the percentage of reduction is too high and check out my ESR and CRP results to see if they still rising - maybe different after three weeks in Leflunomide- but they did say 6-8 weeks before noticing much improvement. My original dose of Pred was 40mg when GCA symptoms reared their head - then they even erred in ththe side of caution when deciding how much to give me, perhaps more then would have been better. If I have to I will pull the DMARDS issue out of the bag! x
OOh thanks for update. I missed it when it came in - DorsetLady kindly sent me the link. Oh the "Maybe I'll just take a couple of Pred" moments!!! (or in my case - a couple more - my doctor would kill me). You made me laugh. Best of luck - hope all keeps going good!!
Glad you found it (thanks DL). 3 weeks on, not feeling too bad considering, but cautiously dipping back into the Pred Club at 1 mgpd occasionally since I've been doing quite a lot of physical work.
It seems that 1 mgpd is currently enough to keep the PMR symptoms at bay. Also, less of the DF (Deathly Fatigue), less often - which has to be a good thing.
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Rash on forearms from pred tapering 
Club Zero - I think...
