as per rheumy advice, dropped after one week of 40 to 30 mgs pred 2 days ago, havent taken this morning yet, but I have felt awful, very strange , woozy, jelly like weak legs, very fatigued, waking so early can,t get back to sleep, for last couple days. I have read here, only should reduce 10 percent at time, but followed his instructions, had only been on 40 for 7 days, for suspected GCA, high markers, as posted few days ago, spent New Years Day in hospital, dehydrated from vomiting and diarrhea for almost 12 hrs, , stomach seems almost normal, rest of body ? Im wondering if I should just go to 35 this morning, he has said stay at 30 for 2 weeks, get blood done, then if markers coming down go to 20, am having MRI on head this wednesday, as ultrasound showed "normal" and thoughts out there?
Side affect?? dropping fromm 40 to 30 mgs pred af... - PMRGCAuk
Side affect?? dropping fromm 40 to 30 mgs pred after one week
Immediate effects are almost always the body protesting at the change - and if so, that will settle down over the next few days.
As PMRpro says, body objecting to reduction...so maybe in future try a smaller drops... so from 30mg to 25mg for a week, then to 20mg for a week...but after than it may need o be smaller drops, depends whether you have GCA or are just reducing from increased "just in case" dose.
would body reject drop from 40 to 30 even only being on the 40 for 7 days though?
It's a 25% drop - so very likely...but should stabilise after a couple of days...
Steroid withdrawal happens pretty quickly and lasts a couple of days or so.
I had the same symptoms when I was tapering too fast
With GCA/PMR my dr went from 40 mg to 35 mg after two weeks and then 30 after another 2 weeks and when I finally got to talk briefly to a Rhumat, 6 weeks later said that had been much too fast but too late to change it now. Sorry I can't comment on what to do now but those more knowlegable have, I didn't have a lot of faith in the rhumat. as he just wanted me off steroids altogether further down the line, so if he said it was too fast it must have been. However I had had a lot of normal GCA/PMR symptoms so it was pretty obvious it was positive.
I think arvine is reducing following a flare - so reducing from high dose is not quite the same as "normal" tapering...
so is dropping 10 mgs, from 40 to 30 within a week pretty common, as I said, I am having what seems to be side affects, either from the drop, or whatever this is , flare, withdrawal etc?
Probably is (and achievable) if you're are coming down from a flare...but not in a normal taper...
.. as for what is actually causing your current issues may be open to question...but as PMRpro said may just be body reacting to reduction... and hopefully it will stabilise quickly.
The sooner you know from MRI if it is an increase in GCA activity the sooner you can get back to a more sensible plan... but a least your doctor is taking it seriously.
Thanks, should have read her history more thoroughly. Thanks for all your help on the forum.
No worries... there are a few posts to read through to get full story,,,
thank you, well , as I said was on 40 for a week, then he told me to drop to 30mgs, and getting MRI done tomorrow on head, as ultrasound apparently showed normal? even though high inflammation markers, but what I have experienced, along with woozy head, jelly legs, is can,t sleep much, through the night, and wake up very early, only getting 4 or 5 hrs sleep, very fatigued and tired through day, just not feeling well, thing is, didn,t notice this on the 7 days of 40, only last 3 days? How did they diagnose your GCA Im curious,? I have thought about only reducing to 35 for next 2 weeks, but trying to follow rheumy,s advice, would it be the drop causing me insomnia? After getting down to 4 mgs, before all this happened, pretty discouraging having to start all over, been onprd for over 6 yrs now,
So sorry you have gone back up on your pred dose. I really feel for you. I should have read your history. As far as diagnosis I didn't have anything other than blood test which showed high inflammation markers and had things like jaw claudication, annoying face ache, tender scalp ,numb tongue with white tip, seeing crystals around my eye etc. and the most horrendous joint aches. So medication from drs but no tests as such as too much covid in hospitals for them to risk it (so they said) as Southend would have been hospital of choice for them in Dec 2020 and they wasn't in a good way at all. However as DorsetLady said yours is different as you are further on with this ghastly disease. Take care, and hang in there, insomnia was something I had in the early days but the lower I go it seems to be returning. Probably just my "make up" and stress levels of my general life.
thank you, just wanted to ask about "crystals" re eyesight, strangely, a couple of times in last few mos, had something like that, optometrist called is , an "ocular migraine"?
Was interested to hear about the ocular migraine. No one had enlightened me. The first time I mentioned it to my dr was pre GCA/PMR diagnosis by him. I told him about the crystals along with my numb legs, he didn't seem concerned as I had previously complained of a bad back. The next time it came up was after a year on steroids when I went to Specsavers and said i needed new glasses. Which is a bit weird as they actually prescribed me new glasses initially. I then took them back for a refund. The optometrist said I would never see poroperly till I had my cataracts removed!!!! WHAT CATARACTS? At that time she said I had steroid induced cataracts and high eye pressure and referred me to hospital via my dr. (he even denied my numbers was very high) But the hospital was obviously concerned as sent me an app. In the meantime I also started seeing rainbows around lights. They was concerned about glaucoma so had an emergency appointment that day, followed by two cataracts off in 2022 . As I had them removed and am on drops for glaucoma the rainbows and crystals also went. I just decided it went along with these diseases, but can't blame everything on them. I have had a terrible run with the "professional" people and have no faith.--- Apart from the eye dpt. Sorry about the rant!
that is how my specialist reduced me 10mg /month until I got down to 15 from 60. Then only 2 or 1 mg drops. It is always a hard few days after the drop but with GCA that’s how they do it in the US. It gets better as I am today going to 8mg! Still have prednisone side effects but much less. Good luck hang in there 😊 I can garden a little now but still take it easy.
Update to symptoms dropping from 30 to 25 and weird visual symptom
Being treated for GCA after 4 years PMR and down to 3 mgs.
One week later, Pred back up. 
