Hey everyone!
What do you do when you are having extreme chills throughout your body? Like the cold is in your bones.
For me the only thing that works is taking a scalding hot shower. Sometimes that means a shower at 3 am which isn’t ideal but I can’t sleep otherwise. Torture!
Thanks!! I appreciate every single word you write.
Now I used to get this pre diagnosis and therefore pre pred. Every afternoon, cold as an icicle! Like clockwork it was, so I wrapped up with heat pads and blankets and snoozed the afternoons away.
Now if I get a hint of this I suspect my pred might be too low, or my PMR is rising. So I watch and wait, keep warm, rest. So I wrap up with heat pads and blankets and snooze the afternoon away!
Any excuse for a snooze!
Hello Mishycake
What dose of Pred are you on & for how long.
Before l was diagnosed, l was perpetually cold, l wore more layers than an onion & had to tuck everything in.
Thankfully in one way it was Winter as l was always swathed in velvet & scarves. I had to buy thermal tops from M&S to wear at night as well as a scarf, l was always afraid of choking myself.
I found hot soup very good & drank lots of hot tea but l was never really warm.
Once l was on the steroids the layers started coming off!.....
Let us know your dose & journey so far as we maybe able to advise you better.
Kind Regards
MrsN
Started on 20mg in the beginning of March. Started having random fevers of 103 two weeks ago so rheumy said reduce your dose to 15 because twenty might be too hard on me. I skipped 15 and dropped to 10mg last week. Body is adjusting , soreness, pain, but there was a TON more pain on 20.
The chills are impossible to quell without the hot shower 🥶
I live in a cold place so that also doesn’t help. Need to move, will move. I love dry heat. But that’s another post 😀
MORE pain at 20mg? Doesn’t sound very PMRish! Did you have a good initial reaction to pred?
Could be that by dropping to 10 you’ve gone too low and PMR is poking through.
Random fevers??? Sure you’ve not got a hidden infection?
Any chance these are hot flushes due to menopause?
25 years old. Hot flashes not in the dictionary yet. I have MTCD actually. and polymyo and dermatomyo with history of interstitial lung disease and pneumonia and scarring on vocals fr coughing. My initial post explains my story in more depth , but it’s on the lupus page I believe. Going to copy it to my profile. Brbbbb
Okay. That explains dissonance.
So have you had a chest X-ray? Pred may be camouflaging a chest infection?
Don’t know enough about your problems to advise, but do you ever take your pred as split dose? Or earlier than the 8am that docs think it should be? I’m assuming you’re on long term pred and not short course.
I’ve had about 5 different chest x rays, ct scans, echocardiogram, all of it done after this bout of pneumonia in December. Nothing new showed up, except that the pneumonia was gone (yay).
But! I have thought about splitting my 10 because by bed time I’m done for, it’s all been used up. The pred has been giving me insomnia so I’ve been taking it at 5 am since I dropped to 10 mg.
On a short term plan with this rheumy he wants to put me on azathoprine soon so I can wean off the pred. From my history it’s done a number on my joints and muscles so just aching to get off of it. (Get it, aching) 🤪
Ah but those scans were December, we’re March now.....NO we’re April! Things change. And you say you had pyrexia in March?
Nope, the last time I was in the hosp was March 1st.
“Started having random fevers of 103 two weeks ago ”
That reads like mid March to me?
Beginning of this march? Just 30 odd days ago? Pmr probably still in full bloom but feeling more pain at 20mg does sound a bit cockeyed for PMR.
“Once l was on the steroids the layers started coming off!.....”
Since steroids I’m rarely cold. Always was a cold mortal, now I’m always underdressed compared to the general populace!
Funny isn't it - I was hot most of the time with PMR alone. I had a couple of winters when I was on a lower dose of pred so the PMR was less active where I was cold, I needed proper winter clothes and even wore socks!! Back to being reasonably warm again now.
Your inflammation must be warming 😉
Hello Mishycake . I’m sorry you are feeling so poorly. I just wondered if you would get further replies if you posted, if you haven’t already, in the MyositisUK forum? Most of us on here will be twice or three times your age and take prednisolone for polymyalgia rheumatica or GCA. I don’t know enough about your complex illnesses to advise but hope you feel better soon. All good wishes x
I also felt very cold for a good year before being diagnosed with PMR, now I sit on a heat pad that also goes up my back on the sofa , and also keep the electric blanket on number 1 all night, after roasting the bed on number 4 before I get in it if I am cold that helps, but I still love the scalding shower in the mornings .
Take care keep warm x
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