Headache after coming off prednisolone

[Ubeaut]

I’m new here, apart from browsing and learning a lot, thank you. I am female age 67, in UK. I am asking humbly for your thoughts, realising that I am much better off than so many on this site to whom I can only offer my sympathy.

Can anyone help me judge whether my current frequent headache may be due to GCA, adrenal insufficiency or something else of concern, or hopefully just a temporary thing and nothing to worry about, possibly from prednisolone withdrawal or sleep deprivation?

The headache is mild. It is there every day on waking ( and sometimes when I wake during the night). It is located across my forehead, usually symmetrically centred. It often disappears completely during the day. I haven’t taken any painkillers for it. It began to appear when I was nearly tapered off a high dose of prednisolone, and has continued to occur during 12 days off prednisolone. I do not usually get headaches.

Any thoughts? I realise that this is not the place to come for diagnosis, but if you read my full story below you may see why I am asking here.

About 7 weeks ago I had sudden onset of severe floaters in left eye, which got me sent to ER, and thence to emergency appointment with ophthalmologist and loads of eye tests. With hindsight, I think the original concern was that I had PVD (posterior vitreous detachment) which might be about to cause retinal detachment. But the ophthalmologist was obviously well trained to look out for GCA . I had no symptoms of pain or vision loss ( though the floaters are so bad it is a bit hard to be sure) . Testing showed some difference in pupil response to light, and loss of colour vision on left (as shown by those dot tests, my colour perception seemed normal to me). The ophthalmologist explained about possible GCA, gave me packets of prednisolone to take home and said he would phone me to start taking them if blood tests came back showing inflammation. The next day he phoned that ESR was 57, they had accidentally failed to test CRP, start taking 60 mg prednisolone. I had ultrasound on temporal arteries the next day, all clear. The following day floaters appeared in right eye and after a few days the right eye had worse floaters than left. Follow up at ophthalmology after 7 and 14 days, nothing new from eye tests except colour vision back to normal, ESR down to 43, CRP normal, discharged from ophthalmology with a diagnosis of PVD, and referred to rheumatology.

Rheumatologist said “low clinical probability of GCA”, taper rapidly off pred, discharged.

I was on 60 mg of pred for 16 days. Taper was 3 days each at 50, 40, 30, 20, 10, 5. So in total I was on pred for 34 days. I have been off it for 12 days.

The side effects of pred were incredible levels of sleeplessness ( between 1 to 4 hours at most in each 24 hours). I would fall asleep easily, wake feeling like I had slept all night, but discover that only an hour or two had passed. I felt very energetic and was doing housework etc during the night, and only sometimes had a second sleep. This didn’t change until I was down to 5 mg of pred. Only now after 12 days am I getting back to around 7 hours sleep a night, and I am dreaming again. I have never had any sort of catching up long sleeps as I would have expected. Nor have I felt fatigued really, just normal and not hyped up. So really nothing to complain about at all, except this headache. And of course, the little worry about actually having GCA which I had never heard of two months ago.

I’m looking for comments about the headache compared to GCA headache. Also whether anyone had a diagnosis of GCA after having floaters, differential pupil response to light, or loss of some colour vision?

[PMRpro Ambassador]

Hi and welcome.

I'd be inclined to think it is not GCA - GCA headache is usually much more severe, the usual comment is "like no headache I've had before" It would be worth trying simple painkillers - they almost never make any difference in GCA. I think the most likely cause will be the rapid transition from a very high dose of pred to zero. I think you really have been checked out pretty well but if you have any further visual symptoms of any sort do ask again.

It has been established it isn't possible to"catch up" on sleep even though we do talk about it. Your experiences with high dose pred are pretty typical really. And the lack of fatigue is another suggestion that it isn;t GCA - you do usually fell unwell, obviously not always but GCA is a serious systemic disorder and it makes you feel ill.

[Ubeaut in reply to PMRpro]

Thanks so much, that is reassuring. I will try taking some paracetamol tomorrow if the headache is there just to see if there is a response.

That’s interesting to know we don’t catch up on sleep. I have in the past thought I was catching up after late nights, but on reflection it was probably just an excuse for a lie-in , so oversleeping, which didn’t actually make me feel better for it.

[PMRpro Ambassador in reply to Ubeaut]

I think that is the probem - you feel worse if you sleep too long! I discovered it when I was hoping having some extra sleep might make up for the lost sleep and resulting fatigue when my husband was ill. Now, 5 months after his death, I am sleeping much more soundly - and would happily turn over and go back to sleep! But I get up and make my usual cup of tea rather than do that. Still not sure if that is better! But when I feel sleepy in the afternoon and go for a snoze, it is like an alarm going off and PING, wide awake!

[DorsetLady PMRGCAuk volunteer]

As PMRpro says -a GCA headache is not like any other - excruciating. (been there)...and although a negative biopsy is not a 100% guarantee you don't have GCA, you do seem to have been tested pretty well.

Do you have any of the other typical GCA symptoms -jaw claudication, tender scalp, pains in shoulders?

I personally didn't have the visual symptoms you describe (others have), but did lose sight within a matter of days when I had blurred vision in one eye.

As suggested I would try painkillers for headaches, but you obviously need to aware of GCA, and if any more severe or different sight issues occur then please follow up. ...and any new headache should be checked out - if its not GCA, then you need to know what it is.

[Ubeaut in reply to DorsetLady]

Thanks DorsetLady. No it certainly isn’t excruciating, thankfully. And I have no symptoms in jaw, scalp, shoulders, or any feeling of general unwellness.

I’ll try the painkillers, and keep alert for vision changes. I have anyway been told to monitor my vision as PVD can increase risk of retinal detachment. And try not to worry unless the headache gets worse or other symptoms appear.

Thank you and PMRpro for your kindness.

[DorsetLady PMRGCAuk volunteer in reply to Ubeaut]

As a matter of interest do you have NZ or Oz connections - name suggests you may?

and don't be paranoid about things, just aware..and keep us informed please.

[Ubeaut in reply to DorsetLady]

LOL, yes I spent many years in Oz. I was stuck for a user name as everything I tried seemed to be taken, and I guess my inner Aussie took over for a moment.

[DorsetLady PMRGCAuk volunteer in reply to Ubeaut]

Though so! My daughter and family been in NZ since 2007-well except for youngest grandson who’s back here for a few years studying then working.

[piglette]

My optician said a GCA headache is the worst in the world!! He may have been exaggerating a bit, but he was trying to say it is bad.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Worst I’ve ever had…..

[Karenwelshx]

I been off pred a week tomorrow and even thou still got headache it definitely not as bad as when on it. Gp told me it should go completely in time but as long as it goes with painkillers she not worried

[Ubeaut]

Thank you Karen, this is reassuring.

It’s good that you have come off the pred.

[pegpowell]

I suddenly had many floaters all at once in my right eye, went to the eye doctor who suspected involvement with my carotid artery and was sent for an ultrasound which discovered complete blockage of my right carotid and partial blockage of the left. I had just had ultrasounds of my legs because of pain and foot lesions which found blockage in the right leg and partially of the left. Was referred to a vascular surgeon who gave me a statin and blood dialator that eases the pain by widening the arteries. Peripheral Artery Disease (PAD) was the diagnosis and medication that hopefully will replace stents. I have been on pred for over six years, currently on 3 mgs for PMR. Before the floaters I had noticed a slight headache occasionally. I never had headaches before and they weren't bad but were on my forehead. Maybe you need an ultrasound of your carotids.

[Ubeaut in reply to pegpowell]

Interesting, though not in a good way! I have just had a CT scan of my head, which was ordered before I was discharged. I’ll wait to see what that shows, if anything, and ask the question about carotid arteries then. Thanks for the information.

[pegpowell in reply to Ubeaut]

I hope you don't have my diagnosis. I had no warning of this disease until named. I am almost 84 and smoked for 35 years (quit at age 45) and there was a history of heart failure on father's side of family. I had assumed my leg pain was PMR for over a year. I would be very interested in hearing how the tests turn out.

[Ubeaut in reply to pegpowell]

I will update. I hope you are doing ok, all things considered.

I know it’s not a big deal compared to other symptoms, but can I ask whether your floaters improved, or whether you got used to them?

[pegpowell in reply to Ubeaut]

Yes, they are all almost gone. I used to be bothered, thinking there were bugs flying around. I guess they are like wounds healing and go away. It took a few months as they appeared in December.

[Ubeaut in reply to pegpowell]

That is positive news, and I will hold on to the prospect of improvement there.

[pegpowell]

youtu.be/R4Jzmj5X9xA(Not working as expected?)

If your problem does involve the carotid arteries, the above lectures by a couple of doctors on cholesterol and statins could be of interest to you. I have heard only negative remarks on statins and the above tells me why I shouldn't take them but leaves me hanging as to what to replace other than diet--mine has usually been good, I quit smoking years ago, and was very physically active until PMR raised its ugly head. I am beginning to get muscle pains caused by statins that many people experience after less than a year which leads me to believe the other drug, Cilostazol 100 2 xs a day, that widens the veins, took away the original pain in my legs. I take Rosuvastatin Calciium 5 mgs 2 xs a day plus 3 mgs pred. Hopefully you won't need any of this information. I am very interested in your test results.

[PMRpro Ambassador in reply to pegpowell]

Can you check the link please - it doesn't work. I suspect the full stop in the middle of Youtube which is usually one word

[pegpowell in reply to PMRpro]

youtu.be/R4Jzmj5X9xA(Not working as expected?)

Sorry, that's what I put in and then something happened to cause the screen to come up. Hope that works.

[DorsetLady PMRGCAuk volunteer in reply to pegpowell]

Both work for me ..,,

[PMRpro Ambassador in reply to pegpowell]

Works for me now - but funny, I took the full stop out of your first link and it worked ...

[Ubeaut]

Hello friends. I haven’t been on this forum for a long time. I was very lucky, I turned out not to have GCA, and came off prednisolone with no problems except the mild headaches which prompted my original post, which went away quite quickly. I have had had other totally unrelated health issues so not exactly been living my best life, but feel like I may be entering a good patch now. I still have the floaters which started the whole GCA question, but I have got used to them.

I just wanted to say a belated thank you for this forum. It helped me when I was worried, and it also gave me perspective to read of the tough times that so many people go through. I wish you all the very best.

[PMRpro Ambassador in reply to Ubeaut]

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