After my positive visit to A&E 2 weeks ago when tested for GCA and was put on 40mg Pred. Doctor phoned to say PET scan showed lots of inflammation and to continue with 40mg till 6 January when I have an appointment with Consultant. I am now feeling very unwell presumably from side effects - night sweats, nausea and very shaky. Phoned Rheumatology nurse helpline yesterday and was told they would ask doctor for advice and someone would call me back. Haven’t had a call back yet so hoping someone on here can help. I did a lateral flow test in case in was covid but that was negative.
UPDATE
Just had call from Consultant, told to reduce to 20mg a day until I see him on 6th January. He said that as I have had gastric problems for many years if I continue to feel very unwell and have stomach pains need to go to A&E to have it checked out. Hoping reduction in Pred will help stop the nausea.
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Baner
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So sorry, you’re feeling so rotten. I remember well at your stage thinking that on balance I felt more unwell on Pred than without. Sadly, it seems that people aren’t told how it’ll feel apart from a rather dry, exhausting to read list of side effects in tiny print. Once you settle in to the idea you may well feel ghastly and it’s a necessary evil, that gets better with dose reduction, it helps. I don’t think docs realise how rotten one can feel. I was on 60/40mg for 6 weeks before reducing. Regards your nausea, are you on any sort of stomach protection and do you take the Pred with a decent amount of food?
Sleep deprivation is common. I just gave up worrying about a solid night and existed on a few hours plus naps. Pred made me feel drugged and uncoordinated when it was first in my system for a couple of hours and I could barely stand. Not everybody gets this though. I used Pred like a sleeping tablet and then woke really early which seems to happen with others anyway.
So although we have slightly different I’ll share my experiences of Pred that made me feel weak, shakey, buzzy, sweaty, hyper but feeling like I had to move in slow motion, muddled but feeling sharp, no concentration, volatile emotions (couldn’t watch any tv or news unless it was bland) and generally totally out of control of my body.
One thing to do now is to eat a very low carb diet to a) lessen the wild blood sugar swings, b) avoid weight gain and c) avoid high blood sugar such that you are in the diabetic range. Also low salt helps with the fluid retention from Pred making onto sodium more.
I dare say that if you had been left without Pred you’d be feeling pretty bad too, but it seems counter intuitive that a treatment makes you feel foul but is meant to be helping. I had to make the same leap of faith with chemo too.
It does get better but for now, clear the diary, don’t try to live life normally and listen to your body. Above all rest with a vengeance.
Thank you so much for your reply. It’s almost the same as I’m feeling, reassuring to know I’m not only one. I take Omeprazole 20mg for the gastric problems and have been told to double the dose. I also make sure I eat before taking Pred. The consultant’s call was very helpful, and I’m hoping reduction to 20mg will help. Really appreciate your advice, getting used to having something like this takes a bit of getting used to. Hope you are well. This site is so helpful.
Does the rheumy not think it is GCA then? Because it is all very well reducing the dose blaming the pred for how you are feeling - but it could also be GCA ramping up. If you get ANY visual symptoms at all, take more pred and head for A&E.
He did say the temporal biopsy was negative and latest blood tests were clear. He does think it is more likely to be PMR than GCA, but seems more concerned about the nausea as I have had problems with gastric reflux for many years. I have to say I do find feeling nauseous difficult to deal with, but it does improve slightly during the day. Life as I knew it has come to a stop and I am finding that difficult to come to terms with.
Fair enough then - but nausea is also a GCA symptom for many. I would find it difficult to cope with. Have you tried taking the pred before bed? And enteric coated pred?
Wasn’t told about nausea being a symptom of GCA, just told to take pred in morning to help with sleep disturbance. The pred I have were dispensed by hospital pharmacy and are not enteric coated. Because I have had nausea problems in the past just assumed it was a side effect of the pred. Will try taking the reduced dose before bed, worth a try. Thanks
I also had negative biopsy and normal bloods but I was still treated as GCA on the basis of symptom history and good response to Pred. Not everybody has abnormal bloods and the biopsy can give false negatives if the abnormal cells aren’t in the piece of artery removed. To everybody gets on with Omperazole. I suffered with gastric reflux prior to GCA and Omeprazole made it worse and in the end had to persuade my doctor to give me enteric coated Pred which worked well. Interestingly years of gastric problems have resolved since being in remission.
Yes, life does grind to a halt for a while and it is hard, but accept that early on and it makes life easier.
I echo everything Snazzy has said. My first 3 days on 40mg I don't even remember, didn't eat anything and only started to feel better when the dose was increased. One of the big problems with high doses of pred and GCA is that you don't know which of them is causing which symptoms. I still don't! I hope you feel better on 20mg, but of course you have the pred in your possession, and if things do get worse, you'll know what to do.It will get better.🙂
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