Fed up with this…….

[jaycee444]

Have just reduced from 4.5 to 4mg using DSNS and intend remaining on that dose for a further 2 weeks before attempting to drop again. Throughout this last reduction I have woken up with pains in both shoulders and upper arms which have pretty much worn off during the course of the day. Also have a bit of jaw ache (chewing doesn’t make it worse) when I wake up and again that wears off during the day. I am wondering if this pain is all part of the adrenal process and can certainly sit it out if needed as really dont want to hamper this reduction process unless absolutely necessary. I have days where I get up - have breakfast and feel exhausted before I even start my day - struggling to do the most simple tasks without having a sit down. Other days I can cope and have bursts of energy throughout the day. Any little problem seems in my mind to be a major disaster and I find myself really stressing out about minor stuff. My anxiety levels are really high most of the time.. Does this sound ‘normal’ for this stage ? I am willing to put up with all this discomfort (I dont have much choice ) if I know Im on track and there is light at the end of the tunnel but I am fed up at present .

[DorsetLady PMRGCAuk volunteer]

Anxiety and bouts of fatigue are most certainly signs of adrenals struggling.

I’d be inclined to stay at 4mg for at least a month (longer if necessary) and give them a chance to catch.

There really is no point in trying to rush things.. much as you might want to…

[Louisa1840]

Jaycee, I'm in the same boat as you! I'm down to 3 and a half and, occasionally have spurts of energy, usually first thing in the morning. Life is managed with frequent sit downs and a full-on rest in bed for an hour around 12 Noon. I'm also so stiff I can hardly move at times but I think this may not be PMR related as I have experienced stiffness since my 50's. I have just started having electroacupuncture for the stiffness which became much worse after a recent bout of shingles. It's still early days to say it's working........... Here's to being fed-up together!!!

[Zebedee44]

Hi jaycee444, me too. I call them my “failure to launch” days and I don’t have much choice but to lie on the sofa watching television. I’m almost established on 3.5mg after eight years since onset of PMR and this is the hardest stage of tapering. I do manage occasional bursts of physical activity but find my brain lagging behind.

I feel a determination to succeed at this taper which I know is not necessarily going to work with PMR but the thought of going up and not down in dose is not in my game plan! It’s good to know I am not alone, xx

[herdysheep in reply to Zebedee44]

I love the "failure to launch" quote. Can totally identify with that.

[jaycee444]

Thank you for your replies….yes I too feel a determination to succeed with this taper . I am 5.5 years since diagnosis and I feel I really want done with this now…. I know I have to be patient and I will be but I certainly dont like this stage of the process. We all slow down as we get older but this is ridiculous!!!

[LIVEORDIEHEREIAM in reply to jaycee444]

"I know I have to be patient and I will be but I certainly dont like this stage of the process. We all slow down as we get older but this is ridiculous!!!"

That is just SO quotable! I FEEL exactly that too but the reality is that despite how we feel about it, this disease requires, above all else, PATIENCE! Sad but true.

[agingfeminist]

PMR has a will of its own...and there is nothing we can do to alter that...but it does help if we taper appropriately...you can't bully pmr into submission or remission..it is always ready to bite back...plodding patience is all we can do.

[PMRnewbie2017]

Yep, been there too. After 3 failed attempts I'm now at 2.5mg and from past experience will sit here for a month to ensure all is well. For me, aches and stiffness always occur when I begin a reduction but recede by the time i reach week 4 of the DSNS schedule. I take paracetamol at bedtime and that stops any morning soreness. I still take my Pred at 2 to 3 am and if I don't waken I take it when I do. I have days when I can conquer the world, and days when I just cannot get going. 18 months ago when I was on 2mg I had a basal cortisol test which showed my cortisol level was brilliant. However TBH I didn't always feel as good as I had thought I would, with such a good result.I've been on the PMR journey for 7 years in November. I can totally understand your frustration but all that does is make things worse to be honest. I try to lead as stress free a life as I can......not always easy!, and do everything I want but in moderation.

My Dad had PMR and never stopped steroids. I may be the same, but if a low dose of Pred works, so be it. There are far worse illnesses than PMR.