Feeling cold

[HomeBee]

Hi poly peeps - is feeling cold after steroid reduction normal?

[PMRpro Ambassador]

I wouldn't be surprised at lower doses - adrenal effects. And it may depend on how big steps you take. But you don't say on your profile

[HomeBee in reply to PMRpro]

Thanks PMRpro - I started on 15mg pred in Feb, reduced 2.5mg in April, reduced another 2.5mg in May and now reduced 2mg so currently at 8mg.

[PMRpro Ambassador in reply to HomeBee]

That is about the level your adrenal function will start to return so that could be why. Under 10mg you should be reducing just 1mg at a time to assist with that. You haven't been on pred long so it shouldn't be too much of a problem though.

That is a very fast rate of reduction in PMR - have you had any return of PMR symptoms?

[HomeBee in reply to PMRpro]

Thanks for your reply and it’s reassuring to know that feeling cold is due to the reduction in steroids. I haven’t experienced PMR pain symptoms during the reduction but have felt fatigued and slight headache but nothing to cause concern. I’m not counting my chickens yet as I know I have a long way to go. As my PMR onset began following the covid booster I’m hoping mine is going to be a shorter journey, although that’s unknown. I have adopted a new way of eating and am very strict with the carbs I consume. I’m really hoping that the anti inflammatory foods are helping my reduction and will try anything to get back to how I was before PMR. This group has been invaluable and I have read and learnt so much and have felt very supported since joining. Enjoy the bank holiday weekend my garden is looking very patriotic 🇬🇧 x

[PMRpro Ambassador in reply to HomeBee]

Doesn't affect me - I live in northern Italy!!! Though it so happens today is a public holiday in Italy - ironically to celebrate the rejection of the monarchy and Italy becoming a Republic ...

[HomeBee in reply to PMRpro]

Ahh ok - enjoy your public holiday 🇮🇹 thanks also for sharing your knowledge

[Bcol]

I don't have a technical answer, other than Adrenals, but I certainly felt colder when I went below 5mg. Back at 5mg now so will see if it changes.

[HomeBee in reply to Bcol]

Bcol thanks I’m now on 8mg

[jarn]

Well, all I felt was after starting Prednisone my body did indeed feel cold. I was thinking it was combination of aging, but prior to PMR, I was usually much too warm. Now, 2 years on, it is getting better but still feeling chilled more easily. So can only say, that these drastic changes to our bodies, have many effects. Period. At least we are still carrying on!

[HomeBee in reply to jarn]

Jarn thanks, I’m hoping to get to 5mg later this year, currently on 8mg and feeling cold so will wrap up warm and enjoy the sun when we get some.

[Broseley]

Hi HomeBee, during PMR before diagnosis, I felt cold all the time - unusual for me as I'm always too hot. After going on pred I stopped feeling cold. So I'm the opposite!

[HomeBee in reply to Broseley]

Hi Broseley - thanks for your reply. It’s interesting how PMR affects people in different ways. I’m hoping my reduction goes to plan and that your’s does too. x

[Broseley]

Thanks!

[AyJayBass]

I am currently on 5mg of Pred and have been thereabouts for the past few months (tried to get lower twice but flared each time when (DL) slow tapering from 4.5mg to 4mg). I normal for the first few hours of the day but by late morning I start feeling cold and have to put on another layer. I am usually sitting at my computer most of the morning. Going out for a walk for 30 mins or so helps me to get back to normal temperature.

[HomeBee in reply to AyJayBass]

Hi - thanks for your message. The tapering is hard work and it’s a fine line between pain and no pain. I’m trying a keto/low carb diet which hopefully may help my inflammation and possibly aid the tapering. As for feeling cold, I’ll layer up and have a walk too as that’s sensible. Sitting still doesn’t help either. Thanks

[DorsetLady PMRGCAuk volunteer in reply to HomeBee]

“The tapering is hard work and it’s a fine line between pain and no pain. “…..

Perhaps the answer to that is you pushing, or being pushed into too fast a taper….it’s not a relentless, come what may race to reach zero (despite what many doctors imply) - it’s a steady taper to find the LOWEST dose on any given day that controls your symptoms, and hopefully gives the same relief the original dose did. Sounds as if you may well be teetering on a dose that is borderline.

Plus you are just about in the zone when your adrenals need to re-awaken, sometimes that’s difficult - so maybe smaller steps - 0.5mg rather than 1mg and a slower taper - this is just one example - healthunlocked.com/pmrgcauk...

As you only started Pred in February, time to ease up a bit methinks.

Might also be worth reading through this, if you haven’t already -

healthunlocked.com/pmrgcauk...

[HomeBee in reply to DorsetLady]

Hi DorsetLady thanks for your message and I appreciate your steer. I’m in no race and being guided by my GP in this journey plus I’m reading lots about the condition, diet, tapering regimes etc. I appreciate your wisdom and knowledge and will read through the details in the links you’ve sent too. Plus I don’t feel as cold as I did earlier in the week. Bloods next week and GP follow up too. Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to HomeBee]

Good that the coldness is improving-but that might be a reason to tread water on reducing for a little while - as others says it could well be due to tapering. We all react slightly differently..and although some doctors know the obvious ones, they don’t know the individual’s quirks.

If you haven’t seen this as well, might be worth a glance through -

healthunlocked.com/pmrgcauk...

[HomeBee in reply to DorsetLady]

Thanks for taking the time to send another message and link, I’ll take it steady and understand that the inflammation builds up and can take a while for symptoms to appear when tapering. I’ve been on this dose for a week tomorrow and no other symptoms so far. Thanks again