Fed up doesnt even cover it: HI fellow sufferers... - PMRGCAuk

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Fed up doesnt even cover it

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4 years ago•7 Replies

HI fellow sufferers,

Ive been on pred since March, reducing v slowly from 15, now down to 12.

Under hospital care who want me to swap AA to risedronate. Im cautious about doing this because they both seem to have the same side effects.

Have been taking the weekly AA for 5 weeks now , was fine at first but yesterday had the most dreadful day, 2 hours after taking it, fell into a v v deep sleep, woke with awful pains in legs, buttocks and arms, could hardly walk for the rest of the day, also feel sick.

I wanted to ask does anyone know what the ramifications would be if i stopped it completely? would it make my dexa scores even worse (at mo 2 are not good and one borderline).

Im trying to eat healthily, walk daily when Im able, i havent put on any weight from the Pred only under the chin.

Also they suggested swapping the Adcal for calcichew , as the former gave me stomach pains.

This illness is ruining my life, i feel so down about everything, its all i think about every day and how i can help myself to get better.

Im thinking its taken 6months to get to 12mg, how much longer will I have to suffer before Im at lower acceptable levels.

I can just about cope with the pmr pains which aren't too bad but the AA pains are at another level.

One final thing (sorry to be graphic) - i take my pred between 2am-3am and then usually around 630/7 i have one or two very loose motions, bordering on diarrhoea, will this lessen the effect of the Pred? or is 4/5 hours enough time for it to get fully in my system.

thanks

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7 Replies

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Kendrew4 years ago

Hi Pickledagain. Others with more knowledge will be along soon, but I just want to say that firstly I understand completely your frustration, fear, confusion, haste and bewilderment that initially tends to come with a PMR diagnosis. I went through exactly the same. ....You don't understand the condition itself, you ask 'why me' and the race to get off steroids begins! I learnt very quickly that to turn my negative attitude into a positive one, I needed to learn everything I could about PMR and my meds, accept that I had a serious systemic and chronic condition and also accept that the steroids were not my enemy and if I wanted to reduce and eventually come off them, it would mean very slow and careful tapers, being patient and not rushing things!

If you're still 'just about coping' with PMR pains, then you're probably not taking enough pred and are reducing too quickly! Pred isn't a cure, it merely reduces inflammation causing the pain.

I also take AA weekly, and as with all my meds, researched it in some detail. I don't recall discovering anything that would suggest it could bring on the severe and quick- onset of symptoms you described and wonder if there's another cause you possibly should be looking for? I would definitely not be taking AA had my DEXA scan results not showed significant bone deterioration. I think the fact you say that some of your results were "not good" suggests you do probably need to take AA.....it is of course your choice but pred could most definitely cause some further deterioration and you don't want broken bones that are hard to heal on top of everything else! I do think your 'reaction' following taking the AA may need looking into further though.

I've been on pred since diagnosis in May 2019 and trying to reduce too quickly and trying to do too much eventually resulted in a flare in Dec last year. I had to increase my dose from 2.5mg back up to my starting dose and 8mths later I'm still only down to 8mg. Yoyoing up and down is not good and side effects for me came back stronger & for longer!....so weight gain (that had never been a problem) did become an issue, moon face appeared, fatigue much worse, head pain more persistent, hair became much thinner, etc. It takes time to taper because even if you're pain free, the PMR is still active but if you drop below the amount of pred needed to control the inflammation, then symptoms will re-emerge!

I promise you that things will get better. Sometimes it takes a few months for you to settle on the different meds. I have definitely been able to minimise side effects of my meds by taking them all exactly as directed, eating as healthily as possible (low carb, lots of fish & chicken, fresh cooked food and no processed food, lots of water, and exercise that's within my capabilities) and just educating myself as much as possible about PMR and my meds. (Look at FAQ's)

I taper very slowly on the DSNS method. (I drop ½mg very gradually over an 8wk period.) Its slow but steady and allows my body to adjust gradually and gently.

Acceptance was the key though. Once I accepted there was no quick fix here and realised that I was in for the long haul, much of the anxiety and fear passed. You can't fight it...you have to 'work with it' and learn to manage it.

I've had to adjust my lifestyle and find a new normal but this is a condition that for most people will burn itself out eventually. It can't be 'hurried along though, much as we want to do just that. I frequently say that there are far worse things we could have been diagnosed with and I for one would choose PMR every time over some of those other things!

It's not without it's challenges at times, but almost everything it throws at you will be resolvable in some way.

Keep talking to everyone here..... there's so much support, advice and help available. You're going through a tough period of adjustment at the moment but it will pass. I promise you.

• in reply toKendrew4 years ago

thanks v much. and yet ive heard on here that we will only be at best 75% pain free which is why ive been accepting the niggling pain from the pmr

DorsetLadyPMRGCAuk volunteer• in reply to4 years ago

Most studies say ‘at least 70% improvement’ - must most get better than that.

Kendrew• in reply to4 years ago

As DL said.....I'm one of those people who have been virtually pain free for most of the time ......but this has only occurred when I've been taking enough steroids and not trying to hurry my tapers. I frequently have a few niggles from time to time.... usually indicative of having overdone it and pushed myself too far physically. Rest usually resolves these small niggles though. Really important you listen to your body and rest when you need to, to avoid any consequences.

DorsetLadyPMRGCAuk volunteer4 years ago

Difficult though it may be in these current times, I think you need to have an in-depth discussion about your medication issues with your doctor….as most of them seem to upset your digestive tract.

Are you taking a PPI - like omeprazole or similar?

If your DEXA figures aren’t good, then you do need protection, perhaps an infusion would work for you - see this link - versusarthritis.org/about-a...

Pred usually takes a couple of hours to get into system so you should get full benefit, but again if it is causing diarrhoea that’s needs to be followed up.

Plus as Kendrew says ‘coping with PMR pain’ is not okay, you need to be on enough to give you a decent quality of life…which you obviously don’t have at the moment.

SnazzyD4 years ago

Hello, Kendrew and DL have said it all really. I just want to ask what “not good” means re your bone scan. What were your scores?. Pred always gave me loose motions in the morning and it reduced with dose. At higher doses it was proper diarrhoea.

bussell4 years ago

Lots of wise words and encouragement from Kendrew which I fully endorse.

Just on the AA topic - I took it weekly for some years with no side effects at all, then had a break for a year. When I started again I reacted very badly indeed. So I was prescribed instead an annual infusion of Zalendronate (spelling?) - same purpose and no bad reaction. I guess it is much the same as risendronate?

Also after many years I recently stopped Adcal/Accrete, and resolved to up my calcium intake through diet instead. Digestively speaking, a huge improvement. But do discuss, and get your GP's approval for any changes you may eventually decide to make.

Courage! Life will improve!