Pred withdrawal symptoms?

[Judy211]

Hi everyone. GCA diagnosed March 2017 and been tapering ever since. Had my share of high spirits ( Pred euphoria due to high initial dose...quite liked it!) low spirits, and a few other side effects mostly heart related. After a sensible initial taper scheme, I then stayed on 5mg for six months until October 2018 and since then I’ve been tapering gently down. One or two niggles on the way especially with depression but mostly I’ve felt ok and managed well. Anyway, I took my last 1mg tablet a week ago.... after 3/4 weeks of alternating medication days, then a tablet every three days and so on down to stopping completely.

I am just wondering how others have felt when they stop? I have some osteoarthritis in my hands which has felt worse this last week or so, waking me at night etc...and a few leg aches in bed too. I also feel sad which is crazy because mostly life is pretty good, nothing too awful has happened just lately!! Weirdly, I’ve started to perspire! I think my sweat glands pretty much dried up while I was on Pred. And dry eyes and mouth, only at night. I’ve been tested for Sjögrens but it was negative. No neck aches or headaches thank goodness.

I’m thinking I should hold good and hopefully my body is just adjusting. Obviously if things get worse I may have to consider taking more Pred. I’d love to hear how others have felt and any advice is always massively appreciated!

Judy

[DorsetLady PMRGCAuk volunteer]

Hi,

It’s still a bit of a rollercoaster for a while - as you say arthritic pains come back - mine returned at lot earlier whilst still on Pred, so that was nothing new!

It is recognised that it can take anything up to a year after finishing Pred for your adrenals glands to be back up and running properly -and that has a knock-on effect on your body as a whole. Personally I think depending on the length of time and amount of Pred taken it can take longer - and on the individual of course.

I think your feeling of sadness may well be part of the process - which is really the opposite of how you probably thought you were going to feel. We spend a lot of time thinking about coming off the Pred, and then when we do it’s maybe not how we imagined.

It’s not like switching a light on and instantly everything is different - it’s more like the eco saving bulbs used to be when they were first brought out many years ago - switch on and it took 5 mins to get a decent glow!

As you say, hang on in there; if you think there is a likelihood you still have GCA lurking, then try a tablet for a few days, even 0.5mg every few days will help - however don’t let it get out of control.

Not every little pain/twinge is necessarily GCA! A couple of paracetamol might solve the problem - but you have got down to zero in pretty quick time compared to many so just be vigilant - but get on with life and good luck.

[Judy211 in reply to DorsetLady]

Thank you! That really helps a lot. It reinforces what I already think but to have your endorsement has cheered me up no end! I’ll hold steady and be vigilant. Fingers crossed! And thank you also for your advice over the past couple of years...it’s been invaluable.

[jinasc]

Judy

March 2017 and then you stopped pred a couple of weeks ago..........so 2 years and 5 months makes you only the 5th person I have encountered for less than 3 years.

I would ask your GP for an Synacthen Test..........just to see how those adrenals of yours are working. Are you past the menopause and did those sweats subsided during pred?

I would also add, reluctantly, that you remember it is remission only, not cured.

You will not get back completely to your 'old life' you have changed and so has your age. It will improve the longer the time..............just don't rush it.

I would try a tube of Flexiseq for your hands. I know it was developed for knees, but I found the two fingers on my hand it worked there as well. I only found this out thayt you have to wait ten minutes before you wash your hands when putting on knees. I told a few people in the support group and one told me, waving her hands in the air, look I am back to knitting after ten years and now half way through a shawl. Like me she had osteo in her knees. It is expensive, but worth a shot? Works like WD40.

[Judy211 in reply to jinasc]

Hi Jinasc

Thanks for replying! Totally understand the remission versus cure point and Im going to be very watchful. I tried Flexiseq some while ago and it didn’t seem to have much effect but reading what you say I’m going to give it another shot. And yes, past menopause now, but never had sweats during...this appears to be new territory but I’m wondering whether it’s a sign the adrenals are picking up pace and their part in working together with the other glands is gaining momentum. I haven’t googled it so I might be talking rubbish...!

[PMRpro Ambassador]

Blimey - wish my sweat glands had dried up on pred!!!!!!!

[Judy211 in reply to PMRpro]

There’s a silver lining etc....!!

[PMRpro Ambassador in reply to Judy211]

And you can't have one of those without a cloud ...

[jinasc in reply to PMRpro]

Me too.....................however this is about the third or fourth time someone has mentioned about sweats............either stopping or coming on..................that trio can be problematic.

Since 32 and an op (hyster) no glands except the head sweats and still do............

The best thing to happen this month was that (I think it was Poopadoop) talked about cold scarves, I splashed out and bought 2 kinds...........one of each......one is hard work, the other is, so I bought another two and gave one away to a friend (my age) netheir of us can believe the difference it makes.................so thanks Poopadoop if you happen to read this.

[alvertta in reply to PMRpro]

Me too!

[alvertta]

I would be nervous!! Good luck.