For some weeks now I have been yoyoing between 2.5mg, and up to 4mg. This is because, although I have spent quite a long time on 2.5 I'm not sure it is quite enough to control the PMR so a brief sojourn to a higher dose has always helped.
Yesterday, I had already decided to go to 4mg for a day, which I did. At the same time I had pain in my upper thigh, which was not PMR related- I've had problems there long before I was diagnosed. I could not even get my sock onto my left foot yesterday, but today all was fine again, and, as I don't believe it is coincidental, it can only have been the pred that took away this very uncomfortable inflammation.
Today, I'm back at 3.5mg, plus a circumin tablet, then it'll be back to 3mg, where I guess I'll need to stay for a few weeks.
It was a bit of unexpected good news for me!
Paddy
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Charlie1boy
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You know, I really thought you would say that, and I do quite understand why. My excuse is that I have always split my pred, as it barely lasts 12 hours for me, so if I go a half, then do I do it am or pm? So I do both! At least, that's my story.
I have been wondering though whether to take the whole lot in the mornings now?
No, if splitting works for you stick with it. But if it were me I'd be on 4mg however I split it!! It is a really low dose and not likely to cause trouble.
At high doses, I also had little more than 12 hours PMR relief but, at 7 mg pred, I stopped dose splitting without problems. I gradually reduced the evening dose, making sure the total dose was more than adequate.
Haven't tried a single dose lately, but I'm not sure I want to until I really have to. The last time I forgot my night time 2mg of pred, I certainly knew all about it in the morning!
Ever since diagnosis, it has taken up to 4 hours for the pred to kick in, and then it barely lasts 12 hours. We are all very different.
I guess that when I get down to 2mg, then I'll try that all in one go in the morning to see how that works.
Mean times I am happy enough at3.5mg, and feel no pain!
Thanks for an interesting post, and I'm sure Food for Thought for some of Us Lot in trying to understand the mysteries of how best to manage our types of illnesses in our diverse personal contexts - and not according to the often quoted standard medical textbook approach.
From experience and my learning here, and for what my amateur opinion is worth:
The relative effectiveness in controlling PMR symptoms (+/-) of any of the best intended Pred tapering plans (e.g. DSNS) at any time and any stage on the PMR Journey can be dependent on, and may be subject to a conspiracy of any or all of a number of variables including, but not necessarily in order of significance for an individual PMR Patient (clearly, GCA is a different and more urgent matter treatment wise):
An Individual's genetic susceptibility +/- to Auto Immune Disease and related Health Conditions according to Age and Gender Demographics, Co-morbidities, the well-known Heterogeneity of PMR disease course and symptoms in themselves, the potential for PMR inflammatory activity to hone-in on and niggle at any pre-existing physiological vulnerabilities (e.g. Bursitis, Costochondritis etc), the effectiveness of symptoms control +/- of a chosen Pred tapering regimen at any given time, the amount and timing of Pred dosages (i.e. all at once / split / etc), individual Pred absorption rates +/- in conjunction with this, the potential for permanent Adrenal Insufficiency resulting from long-tem Steroid use either way, external factors such as Climate conditions, Infections, Physical Trauma (e.g. injuries / surgical procedures), Dietary / Lifestyle choices, and dis-proportionate Psychological / Emotional Stress in an individual Patient's normal / historical context in their ability to cope with any or all of the above ambiguities and challenges. And.. probably, some other factors too.
My Conclusion?
There is no 'One Size Fits All' solution to the PMR disease process and / or how best to manage it in terms of Pred medication on this complex, often frustrating and debilitating health Journey. The main thing is to use personal judgement Symptoms-wise in combination with sound advice from those who are best placed to give it from a medical perspective. That's my best take on things, for better or worse!
Either way, I hope this is a helpful contribution to this important topic - and please keep us posted on your progress
Yes, I guess you sum up pretty accurately the "slings and arrows" of PMR.
I actually spent 8 weeks at 2.5mg before Xmas, and then upped it a bit to cope with all the Christmas stress. However, getting back to 2.5mg afterwards has been less easy. Some days I felt absolutely fine, so I started thinking about 2mg, but then on other days I felt stiff and generally less good.
My view is that, for me, the PMR fluctuates, but goodness knows why. At least now at 4mg I am completely ok (dare I say that?), so I guess I'll be staying at this level for a while now. Approaching four and a half years now;; who said men have it easier?
I'm sure that the known Heterogeneity of PMR disease course and associated symptoms, i.e. 'being diverse in character' has as much to do with the unpredictability of steroid tapering as any other factor. As is often said here: Symptoms Rule, independent of even the best tapering plan (e.g. DSNS).
That said, I've experienced these paradoxes too. In other words, you can stay at or even increase a Pred dosage level, do all the recommended things and feel worse: or reduce / not do the recommended things and feel better. Hey ho!
Yep, coming up to 4 1/2 years too. On, and forwards..
I see you put e.g DSNS in your two responses but this is not the only plan it was just the second one, the first was Ragnar's and TAH was the 3rd. Others followed as patients tried both or either and then tweaked to suit themselves.
Very few things with PMR & GCA are set in stone, except that pred keeps us from losing our sight and enables us to manage to walk to a different drummer and keep the pain at the lowest possible level whilst both GCA and PMR make their own minds up and go into remission.
If you put TAPER YOUR STEROIDS into the search box, top right hand side of page , it takes you to a post, which on the right hand side has a pinned section of many plans.
Now for anyone interested in the 'how, where, when and why of why DSNS & TAH reduction plans were introduced and circulated free of charge:
'Prednisolone Reduction Plans' an article on a research project on 'Dead Slow and Nearly Stop' method by Dr Sarah Mackie, Lead Researcher and Patron of PMRGCAUK.
I will say, that perhaps I am biased, but DSNS & TAH do work for many people however as nothing is ever set in stone with GCA & PMR and one size does not fit all that referral to the link is important and what is more PMRpro thinks the same.
The one Golden Rule is no more than 10% at a time that is why the plans were not made for before you reached 10mg. However those dropping patterns can be used following the 10% rule to take a drop as anecdotally told by patients and always listening to your body.
So I ask in future, please refer people on how to find more plans in the pinned section. This is beneficial as one size does not fill all as Sarah has echoed what Ragnar, PMRpro and myself have been saying for years............what works for one does not work for another.
I did not intend to write a long post............but sometimes 'needs must when the Hel drives'.
Four years ago when I saw a dr at chapel allerton called sarah(not Sarah mackie) I will have to find the letter for the name.
I showed her the dsns method I was following and she asked me for a copy for her patients so it goes to show she did not poo poo it like my doctor at my surgery did and I still use it to this day.
I am tapering, down to 3mg. looking forward to 2.5. As I taper, I do not take a "bad" day as needing more prednisone. I would have to have consecutive "bad" days, as I believe my body has to have time to adjust to the new dosage. those adrenal glands have to get back to working full time.
No problem. I was on 2.5 for eight weeks before Xmas, and gradually realised it was insufficient. Doing absolutely fine now at 3.5mg, and no intention of tapering just yet.
Don't be fast to dismiss pain in thigh as non PMR. That is where the inflammation was the worst for me. I am down to 3mg per day, but can notice a definite difference to when I was on 3.5mg. The difference is in my leg muscles, not all of them at the same time. I am going to try to stay at this level as it is more discomfit than pain. I am tapering very slowly at half a mg dosage each time, began that when I got down to 7mg from 40mg. Remember as PMR PRO has told us, the adrenal glands have to start working and taking over again as the inflammation recedes. Good Luck !
I have significant bilateral thigh pain which keeps me from walking normally, taking the steps in a normal fashion, etc. Don't discount thigh pain that lasts a long time as not being PMR. This is a relatively new. symptom; thinking about raising pred?
We talk a lot about tapering down, but not about pushing up when you are feeling worse. How high to go? Is it like going down?? Go up until you feel normal again?? At what intervals? For how long?
Bilateral thigh pain can be a sign of large vessel vasculitis being involved in the PMR symptoms. It is also a sign there may be some other form of blockage in the arteries supplying the legs, peripheral arterial occlusive disease to be exact, and that can be a late effect of any vasculitis. It really is worth getting your GP to check your ankle pressures copared to your arm BP.
Not yet, but I am pushing for one with my GP despite his resistance in a telephone conversation last week - together with lots of excuses for not referring me.
More to report on Weds this week after a face to face meeting, and armed with some reliable info about the possible long-term effects of steroids in terms of permanent Adrenal Insufficiency / Atrophy for Us Lot on the Preds. (See 'Endocrine Abstracts (2018) 56 P44 | DOI: 10.1530/endoabs.56.P44').
Either way, I agree: this PMR (not forgetting GCA - a different proposition medically) journey is loaded with paradoxes and ambiguities - despite the best intentioned wisdom of, and experience from many experts (no judgement implied).
Your analogy of 'the poor running car' resonates with me. I.e: diagnostic criteria / methods might identify one problem, but not others which contribute to it, and in a wider in context.
Either way, please keep in touch and it will be good to compare notes
My PMR started with thigh pain, a bit like the lactic acid pain you get after doing a lot of exercise. The difference was that thus pain didn't go away. So maybe your pain is PMR related
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beginnings of a flare vs reduction in Pred ?
The journey on the other side of PMR/pred?
Curls/pred head
Reducing Pred Advice please
