Rheumy increased pred from 4 to 40 mgs

[arvine]

So a couple o3f weeks ago, after having been down to 4 mgs of pred (after 6 yrs of pred started 40 in Oct 2016) started to get what appeared to be some GCA symtpons, after all this time, tender, bruised scalp and temple feeling, jaw tightness and pain on and off, I called rheumy, immediately put me up to 40 and booked ultrasound , for temporal arteritis, which I had done, after being on 40 mgs pred for 4 days. He called on the thursday before New Years Eve, and said results of ultrasound were normal, although my ESR and CRP were flagged as High for first time in over 6 yrs,? when I asked what could it be then, causing pain, and raised markers, he didn,t have an answer, but said, needed bloodwork, and MRI, had both done, in meantime, ended up in hospital all New Years day, violent vomiting, and diarhea from midnight New years eve for almost 11 hrs, paramedics came, taken to hospital by ambulance, dehydrated, weak etc, had anti nausea meds, IV, CT scan, bloodwork, , WBC raised, electrolytes low, leukocytes hi, and many other blood results abnormal. Released at 8 30 pm that night, 12 hrs in hospital, given oral suspension antibiotic, as caution re possibe UTI, , so was to keep onn 40 mgs pred at his advice for week, which was up yesterday, last few days, have no pain, but have felt woozy, spaced out, weak, jelly like, , spoke to him yesterday, instructed to drop from the 40 to 30 mgs pred as of today, and stay on that for 2 weeks, get more bloodwork done, also, MRI, set up for this wed, on head,. My question at this point is, why am I feeling so spaced out, weird, asked him if could be high dose pred, he said maybe, also, blood work tis past thursday, still showed all markers flagged as High?? evenafter being on 40 mgs prd for 6 dys? He did say, maybe some kind of infection, at any rate, dont like this weird, unusual feeling, also havent been sleeping so well, and waking much earllier than usual, cant go back to sleep, just reaching out for some thoughts, this last year or so has been one thing after another, and so many appts, now this, after was hoping to continue tapering, been a long stretch now, over 6 years,

[PMRpro Ambassador]

Not surprised you still feel ill after that lot! And high dose pred won't have helped the woozy spaced out feeling.

I htink you just have to be patient and look after yourself as best you can.

[arvine in reply to PMRpro]

well thank you , will try, just getting little anxious and worn out with all the issues Ive had recently, but will try,

[PMRpro Ambassador in reply to arvine]

I do know the feeling!!!! But really, so little we can do about it unfortunately.

[DorsetLady PMRGCAuk volunteer]

40mg will have given you most of those weird feelings...but you just have to tell yourself it's better than risking sight, and it will improve as you get lower...

higher readings may well be due to stress, and no wonder...but as we know they can be due to all sorts of things - so next ones may be in better range.

[PMR2011]

If you have some sort of systemic infection (high markers and high WBC’s support that) then that can certainly make you feel spaced out too. Definitely need to treat yourself well through all this until they figure it all out. Good luck!

[arvine in reply to PMR2011]

thank you , have to add, am still having some discomfort in jaws when chewing, and some tenderness in temples on forehead, but came down to 30 mgs yesterday, as per rheumy,s instructions, get MRI on wednesday, suppose to stay at 30 for 2 wks now then get blood work done again