Brain picking !!

Healthy wishes to you all for 2017. I wonder if I could pick some brains. ? I've had to up my steroids over last few weeks back up to 8mg I tried 7mg but found my hip and buttock pain increased, has anyone else had problems reducing from 8mg to 7mg ? I've tried several times but ended up increasing back up to 8mg. Also is there a way of telling if buttock pain is caused by myofacial pain or PMR. I don't seem to hurt anywhere else now just horrible pain in low back and buttocks. Really getting me down now it's been about 2 years I also have awful exhaustion.

My next conundrum is ............ Weight gain while on pred, ready ??? Do people put on more weight the higher the dose of pred they take ? For example if the dose of pred is 5mg daily would that trigger the same amount of weight gain as say someone who is taking 20mg ? What I'm trying to say is it the actual drug in the system despite how much or how little that distrups metabolism ?

Had a bit of a grizzly day today despite spending lots of time with my wonderful husband and lovely careing children and grandchildren all over Christmas and new year

Love to you all for 2017 E ๐Ÿ’๐Ÿ’•

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  • Hello emilytom52. I had the same problem as you describe when reducing from 8 to 7 with definite aching buttocks. I was reducing the dead slow method so I delayed an extra week and then went back to slow reducing and the aches have gone. I must say I have taken it very easy with many more rests and have been quite lazy on the day that I am on the lower pills. So far so good and I am now doing 7/6 the same way. The experts do say this is the stage when our adrenals are being asked to work again so there is an extra problem to deal with. Rest really does seem to get me over some of the difficult reductions so perhaps you should be kinder to yourself. Even lovely events do leave me tired so pace yourself with those too. Good luck and good health in 2017.

  • Awwww how kind of you to reply so quickly as I said I've had a grizzly tearful day. No particular reason other than feeling fed up with always having aching / painful bumper. You have made me feel lots better Thank you. Xxxxxx. Xx.

  • Yes, practically anywhere from 10mg down can be a problem, the most common points are - 10mg, 7mg and 5mg. Which is how the DSNS plan came into being as a good many patients find they can sneak through them without PMR noticing.

    For your low back pain it could well be myofascial pain syndrome, or simply too many too tight muscles (haven't had it myself, but have noticed time and again that sciatica becomes a problem at this point). The only way is to try other treatments, a remedial massage (NOT a deep massage), acupuncture, Bowen therapy, Your doctor may suggest pain-relieving gel, chilli cream or even physio if it's deemed necessary.

    The weight gain - if I understand you correctly you are asking for comparison values? The thing is, it can't be calculated that way (as it is with every other thing) because it is a completely individual reaction. For many the steroids alone can trigger weight gain, but whether that is just the steroids or increased appetite from taking steroids, or fluid retention triggered by the steroids (I blame the steroids for everything including not doing the ironing) so that for some 5mg will lead to weight gain, but the next person on 20mg will lose weight (I wish that one had been me).

    Any questions?

  • Thank you for replying so quickly. Healthy wishes. Xxx.

  • Weight gain - everyone is different. Some people don't gain weight at all, a very few lose weight! It is possible to lose weight on pred and quite few have avoided weight gain - by cutting carbs drastically. It does work. But higher doses usually means bigger side effects.

    You are not reducing relentlessly to zero - you are looking for the lowest dose that manages your symptoms as well as the starting dose did. You may have got there for now - it doesn't mean you won't get lower, just perhaps not just yet.

    Hip and buttock pain could be myofascial pain syndrome or piriformis syndrome - both can irritate the sciatic nerve. Buttock pain is typical of piriformis. I'd suggest the same approaches as polkadotcom.

  • Thank you. Xxx.

  • Hello Emilytom52, New Year's Greetings to you and all here.

    Your post rang a bell with me. I have also been nudging down gently from 7 mgpd Pred recently after a few weeks of feeling significantly better. But, like you, and even using DSNS or my equivalent Escalator method, I've then had a couple of weeks of significantly increased pain, stiffness and 'deathly' fatigue for no obvious reason. Humphhh :-(. So, I've reluctantly 'upped' the dosage by about 10% and am gradually feeling better again - but only slowly after a couple of weeks of feeling miserable generally over Christmas. Yo-ho-ho? No-ho-ho.

    My rationale: more pain and stiffness and fatigue = a combination of over-activity and physical / psychological 'load' and / or too low a dosage of Pred and / or the PMR just doing its own thing despite all. Knowing what to do / not do in response is a difficult judgement call and I guess we just have to live with such ambiguities.

    I think you (and a few others here) have also hit the nail on the head regarding some of the environmental factors which can affect / exacerbate PMR symptoms in addition to the unpredictable nature of the condition itself. In the UK it's been a long, cold, damp, dark Winter (what's new?!). The Christmas season here, and all the commercial hype that goes with it, puts extra pressure / stress on many people (even the healthiest) to do, arrange, travel, socialise, and generally fall-in with our society's expectations of us. And all of this at a time of year when many would privately admit to just wanting to baton-down the hatches, have a quiet time and look forward to a warmer, brighter Spring. Bah, Humbug or what?!

    So, is it any wonder that the above can make us PMR sufferers (and whoever else?) feel more tired and fed up than 'usual'?!

    As for Pred dosage 'nudging' (+ / -), it seems very much a case of going with the symptoms and responding to them by either resting-up and / or adjusting the meds a little rather than pursuing 'a relentless race to zero' (to quote PMRpro and others) and suffering unduly as a result. I know it's a psychological challenge for an active mind that's programmed to planning, predicting and fixing (my own particular challenge!). But we must keep in mind that PMR is a really nasty, chronic health condition that has a 'mind' of its own too, and battling with it (mentally or physically) seems to be counter productive at so many levels. To quote an old saying: 'There are some battles that are not worth fighting...'.

    PMRpro has also mentioned the apparent, massive disparity between the prescribed / actually taken Pred dosage and the body's effectively absorbed dosage - which it seems can vary by as much as 50% depending on an individual's physiology and other factors. So, it makes even more sense for Pred dosage +/- at any stage in the process to be driven more by symptoms than any 'plan' (even the best), given this. The numbers don't always tell the truth...

    If I've understood PMRpro correctly: if a patient has reduced the average daily Pred dosage to the notional, 'critically important' 7.5 mgpd dosage (+/-) at which the adrenal glands are supposed to start 'waking up' but are only absorbing approx. 3.75 mgpd +/- (50% of that): they are therefore dealing both with a statistical anomaly (methodologically) dosage wise and a high risk of potentially dangerous adrenal insufficiency at this threshold - by a huge margin of error. (PMRpro's expert response is welcomed, as always..).

    So, that's it. My tired brain is truly pickled, but I hope this long reply helps in some way!

    Thanks to you and all here for your input, experiences and support in 2015 / 16. Here's to positive things ahead in 2017 for all of us.

    Very best thoughts

    MB :-)

  • Aww thank you Mark for your speedy reply. I'll read again in the morning when the brain fogs cleared. Healthy wishes for 2017 ๐Ÿท

  • It really isn't particularly important WHAT the actual dose is, it's how YOU respond to the dose you are on. The amount of cortisol is the equivalent of 7.5mg of pred (-ish) - so the point you need to be aware of is below 10mg. It might be just below or it might be well below - so as long as you reduce slowly enough below 10mg it will be covered - hence the change in most reduction plans to a 1mg reduction step there. The smaller the step the less likely there will be a "potentially dangerous adrenal insufficiency". Unless you stop taking pred from one day to the next there isn't a huge risk of that - but it is a risk and if you are ill something to bear in mind (vomiting at higher doses in particular). Unusual symptoms should NEVER be ignored, whatever they are.

    If you are entering the realms of adrenal insufficiency then you will usually know - it is very common for patients to complain, with a degree of surprise, that they are MORE fatigued as they reduce than they were before. That is the first sign to slow down. The patients who have no such problems simply keep on in the way to which they are accustomed and get to lower and lower doses, even zero.

  • Thank you. ๐Ÿ’

  • Thanks PMRpro, very well explained :-)

  • Hi Emilytom52

    Happy New Year to You ๐Ÿฅ‚

    I'm certainly feeling the after effects of Christmas today, my poor muscles are screaming ๐Ÿ˜ฑ

    But, that said it's the best Christmas I've had in a long time, I couldn't even walk downstairs or lay the table five Christmases ago (just before I was diagnosed) & last year I'd just finished Chemo for Breast Cancer, so it's kind of relative really!

    I'm sure we're all a little worse Post Christmas!

    I've been back on 7mgs since August & in October I noticed the Chubby little face returning & l've put on an extra half a stone! When I was on High Doses I put on over three stone which gradually 'melted' away as I reduced. 11mg was always my sticking point, many times I got there but ended back up on 15mg or higher after a very bad flare.

    I think 7mg might be where I need to stay for now, I did sneak down to 5mg under cover of Chemo & Dexamethasone so it wasn't really 5mg but I like to pretend it was!

    I'd be inclined to stay where you are or go up .5mg until you settle again, that's what I'm planning to do. I see my Rheumatologist on 11th so see what she thinks.

    I get the exhaustion too, when I simply have to sit down, or I think I'd fall down!

    Very Best Wishes & let us know how you get on. I'm still in bed, catching up on emails etc.

    Mrs Nails ๐Ÿ’…๐Ÿผ

  • Ahh. Thank you mrs nails. It's encouraging when you get reminded your not alone and really I need to thank my lucky stars. Healthy new year wishes. Wouldn't it be lovely if this was a more recognised illness, just so others didn't look so blank when you try to explain. I'm lucky my family understand and my husband is so kind and caring but that still doesn't stop me from feeling guilty xxx. Thank you ๐Ÿ’๐Ÿ’

  • I'm with you there Emilytom52 Everyone says 'but you look so well' & dismisses PMR out of hand! I wrote a piece on PMR v Breast Cancer & the way people react to both!

    Take Care, glad your husband & family understand, that makes it easier I think.

    Best Wishes for 2017 & remember we're all here anytime ๐Ÿ’

  • Bless you x

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