Day 1 of Pred: Well today I started on Pred 50mg... - PMRGCAuk

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Day 1 of Pred

Jc554 profile image
13 Replies

Well today I started on Pred 50mg after yesterday’s and this mornings Dr reviews.

BP was also higher 150/100 when I went in so gave me pills for that also. However when I was home and relaxed it dropped to 125/75 so I’ll leave them on the shelf for now.

Only real symptoms of anything is the mild headache and tender temple at this stage which I have had since it started 9 days ago. Felt a tiny bit stronger today but dr did have a good prod earlier.

Feel slightly fuzzy in my head but probably tired as woke in night worrying.

Took pills this morning and felt slightly jittery after a couple of hours but not sure that was my nerves. Now just feel tired. Legs ache a bit kinda like flu ache but not too bad. I did have a walk in afternoon for fresh air.

One day at a time. Waiting for a date for biopsy.

Work have been good so I can work from home while I settle in.

Onwards and upwards 😊

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Jc554
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13 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Would say the “jitters” are due to the Pred.

If you consider the dose you are on is about 6 times the usual amount of cortisol your body normally produces it’s no wonder you feel like that.

Bit like a toddler overdosing on chocolate cake, sweeties and fizzy drinks!

It takes a little while for your body to get acclimatised to the high dose.

You will feel odd for a while, so please come back with any questions.

Jc554 profile image
Jc554 in reply toDorsetLady

Thank you so much. Nice to not feel alone with it.

I’m a bit of a worrier which I think is half the battle.

Had a nice chat with a very close nurse friend who also helped. It’s good to talk.

PMRpro profile image
PMRproAmbassador

I don;t know what you do, but if you are continuing to work be aware the pred at any dose and especially at high doses may impair your judgement and concentration - so, if it comes to that, do PMR and GCA!!

SnazzyD profile image
SnazzyD

Well done, first dose out the way. It is hard not to over analyse every physical sensation, so try to stay calm. This can be hard to do with the 20 cans of Red Bull feeling and the tendency to fret. Do be cautious about driving because it can make you feel sharp and alert but unable to concentrate without realising. Pred effects do accumulate so if you feel weak don’t worry. As you say, one day at a time.

Jc554 profile image
Jc554

Thank you all, I’m planning on staying home this week see how I settle in. I travel a lot with work so won’t drive until I feel ok.

One step at a time 😊

When I was on that dose I felt like I was on an emotional roller coaster. Crying at the drop of a hat... my head nothing else just my head was like I had turned on a faucet each strand of hair with a drop of water. That I hated the worst and it has lasted the longest.

I didn’t know they would do biopsy after starting prednisone. Boy aren’t I full of good news.

😜

Jc554 profile image
Jc554

Thanks everyone. Tough night very restless. Brain was flying from one thing to another. Doesn’t help my heart does extra beats now and again making me jump. But that’s another story haha

Feel tired but wired this morning and thick headed. Ready for my porridge and day two meds. Onwards we go

Hellyowl profile image
Hellyowl

I only had 2 days off work when I started on 60 mg and that was because doctor wanted me to have a broken tooth out in case it was adding to the jaw pain. I was wired and not sleeping but the energy was such a relief after months of head pain and flu symptoms. I was lucky doctor recognised GCA before I lost my sight. It is important to be body aware. I was lucky pred makes me happy. But my staff told me I was a hyper active nightmare. I was aware when I drove not to get too over confident because of the pred.

Jc554 profile image
Jc554 in reply toHellyowl

That’s good to hear, I like reading positive things like that. I’ll take a bit hyper vs. The other. I guess we are all different.

Hellyowl profile image
Hellyowl

It was hard. After a couple of months the pred affected my muscles badly and I had what I call jelly legs. I just adapted bought a lap top trolly took any help. I had some scary days. Nearly fainted when it was hot and packed in Kings Cross terminal. I don't want to say it was easy. Head sweats when I was speaking in public . but I never let it stop me. I was honest. If I was having a weird experience when I was working I just said why. I loved my job and came out the other end. Just started a fab new job with lots of travellening at 67. I do Pilates to look after my pred muscle. Good luck

Dots___ profile image
Dots___ in reply toHellyowl

Hellyowl, that’s inspirational!

Can you tell me what kind of job you got at 67 with lots of travel? Sorry if that’s too nosy, just that I would love a job like that.

Hellyowl profile image
Hellyowl

Hi, when I became ill with GCA I was running a charity that I founded for abused children and also studying for a PHD. after about 18 months I found this really difficult so I stepped down and recruited a new CEO but she struggled with some of the work so I went self employed and was paid hourly to write all the funding bids and some reports for the charity while I finished my PHD. I actually stopped work for the last 6 months to finish my PHD so finding a new job has been difficult at my age. I am working as a social researcher on a 6 month project 3 days a week and have to travel round the country to meetings and to conduct interviews, I do the desk work at home. I hope it will lead to another contract when I have finished. I now want to work part time and preferably get out and about. lets see how long I keep it up for. Sorry, I probably made the travel sound exotic. its going to be mostly police HQ's. The Pred really affected the strength in my legs and arms and caused a lot of pain. The best thing ever was at my second Rheumatologist (spelling?) appointment she offered me trial Pilates at the hospital with a physio (6 free sessions) I took it up and it has been the one thing that has kept me mobile. I am not a fan of exercise but I also try to go to the gym twice a week where i use the resistance machines to do weights, this also keeps my strength up. Basically I took on GCA as a project, researched it and figured out what worked for me to keep me going. I don't diet though I am vegetarian, just watch what I eat. I was a bit overweight when I started steroids, I put 2.5 kilo on in the beginning and lost it after I got down to 20mg. The steroids are horrid but eyesight is so precious. I have Glaucoma, but my Dad had it so it might not be from the Pred. Hope this helps, it's scary but can be managed.

twinkleyt profile image
twinkleyt

I had only WOW side effects at first - load of energy, stiffness and pain in the body gone, and feeling really happy. I was only on 5 mgs. But after 16 days I experienced painful UTI which then eased off. My course was only for 6 weeks and GP nurse refused to repeat the prescription or taper me off such a low dose for a short time. I was told I did not need to.

Everybody seems to have different side effects, though.

Hope you get the good ones.

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