Hello there,
I’m looking for advice . I was due to taper from 20mg Pred to 17.5 tomorrow as part of the long term taper from 50mg in May. However , I have a bad cold just started and a brief episode of ocular migraine (zig zag pattern in my left eye) …..no headache apart from sinus due to catarrh (I always get this with a cold ) …..Should I stay on the 20mg for another week ?
thanks folks …..typically , it is Sunday !
I would!!!
Thanks, the rheumy wanted me to go from 20mg to 15….I decided no way. I’ll stick to the 20 for the moment.
My rheumy wanted me to do that and I was in agony. When I saw him again feeling like I wanted to die, he wanted me to go from 15mg to 10mg!!
The rheumy was actually ok . When I said I wasn't comfy with the speed of taper, and I quoted info from this forum and the PMR/GCA charity, he smiled and said "You're well informed." .....it's just with the cold , headache and brief ocular migraine, I don't want to be taking steps backwards. This forum is amazing .
Go to 15 by all means, but not the direct route, at least via 17,5mg! Honestly, it doesn't take that much longer and so much better for the patient ...
Yes...that's great advice. I asked the rheumy what % of people with GCA have relapses and he said he honestly didn't know but it was linked to tapering too quickly ....exactly what you all advise on this forum . Better safe than sorry.
At least you’ve got a sensible Rheumy — wished they all realise that! Quite simple really, but it seems to elude so many…
He lists GCA as one of his areas of expertise....but admitted so little research has been done.
It very much doubt it has… but probably too many judging from comment in here. Have to say I didn’t- but then I know mine was very well controlled once diagnosed.. and maybe for obvious reasons.
Think those of us with GCA are hyper about any headache, flashing light etc .....I know I am. That's why I sought out a rheumy who has an interest in GCA. Only 2 or 3 here in Scotland list it.
They don't really need research - that tends to result in a recommendation that is a one-size-fits-all and useless to the majority! They need to listen to the patient and proceed cautiously and look closely at what happens with each patient. The research should be based on the individual patient - and we can advise him of things to look for and pitfalls to avoid!!!!! We have seen them enough ...
This Rheumy certainly listened …..but then came away with the old chestnut of getting off pred in 2 years…..have to say he smiled when I replied… »If it’s the right time for my body » ……as he said ….well informed. My Dad had RA and you had to fight his corner ….I learned that. GP is good but again , happy to be guided by « my symptoms » …..this Forum gives us so much info . Thank you
Ditto to PMRpro comments, but just be aware that 20mg -17.5mg might be in the guideline and might sound easy [especially after higher dose for GCA] but not everyone can achieve it. 1mg or even cutting your 2.5mg tabs [provided there aren’t the coated ones] to get 1.25mg might be more sensible
I only have 5mg …but I still have some ones so could use them . Thank you
Sounds like a plan 😊
Thanks for your input. I had an ocular migraine after my first Covid jag and another before I was diagnosed with GCA….i think we are all so aware of the potential consequences of this condition. Sneezing , and feeling yucky at the mo……good old winter is upon us .
Sneezing , and feeling yucky at the mo……good old winter is upon us .
All the more reason to go slowly -hope you soon feel better..
Thank you.
just a quick note. I suffer with ocular migraines. Take 2 paracetamol at the first sign and lie down in a totally dark room. I find it subsides quite quickly...sometimes returns....I avoid looking at any screen for at least 12 hours and that seems to stop its return.
Hello agingfeminist. Many thanks for your reply . I have only had this zig zag incident twice before. Once just after my first Covid jab (which was accompanied by a horrendous headache) then again just before I was diagnosed with GCA, and yesterday at the start of a bad cold. I suppose , those of us with GCA are always hyper about sight issues . Thanks for taking the time to reply to me. We’re all in this together 😀😀
sounds like a sinus infection may be the root cause so, I would not taper and might add Sudafed to help break up the mucus buildup. Good luck
Thanks....a cold always affects my sinuses....
Could you tell that to the doctor I spoke to this morning 🙄
You should not taper while you are unwell with something else.Don't try to taper until least four days after you feel that you're infection has passed because your body will still be recovering on the dose you are on and wont be able to cope with the changes that happen.
Tapering during an illness or too soon after one is virtually always doomed to fail.
Reduce your screen time , rest your eyes in general , hydrate and just concentrate on getting over your cold , this should help the migraine. If you can do some deep breathing and get some fresh air in the house while you do it that also helps improve ocular migraines.
Hope you feel better soon , Bee
Many thanks. Paracetomol helps the headache and in every other way I feel fine ....it was the visual thingy that got me thinking as all of us out thetr with GCA become hyper aware. This is inly the 3rd time I've experienced this ....I've been out in the fresh air today....Western Isled of Scotland , the air is very fresh .
"the air is very fresh" - that is the kind way of saying it ...
Yes....indeed.....at least there are no gales forecast though we did have a power cut last week 🤣🤣🤣
I had GCA and I have a very full spectrum of Chronic Migraine, the GCA never improved with paracetamol and the ocular disturbance I had lasted longer and was more vivid than that I experience with Ocular Migraines. But if you do find it's not improving or getting worse don't hesitate to get it checked.I have supplemental oxygen now to control Cluster headaches and use it for Migraine management as well. It's worked better than most of the medications so I'm a big advocate for fresh air.
Not that I could have enjoyed it today, the isle of Anglesey is being battered with rain and even us islanders would call it " a bit windy" 😆😆😆
To be honest all 3 times over the last 4 years I have experienced these "zig zags " they have only lasted a few minutes and 2 out of the 3 were cold or covid jab related. Sorry to hear you have the full spectrum. My GCA headache in Dec 23 was excrutiating....you'll know what I mean. Just now I have a good old cold ....many thanks for your info .
Thank you 🫡
Yes Tonynatella, something I need to learn with patience. I was a very fit distance runner and swimmer, .......it's a hard lesson .
Doing my best to taper but…..
Getting a cold/sore throat just as tapering about to start- would you advise delaying the taper till cold is better?
painful shoulders after dead slow taper to 2mg. 
To taper tonight or not to taper.
ocular migraine
