Gca/ steroids

[Fifelassieo]

Update been on 60mg for 5 days now, have had continual headache for days, it is more like pressure above both eyes, could this be a side effect of the prednisilone

[PMRpro Ambassador]

Headache can be a side effect of pred at any dose and especially at a high dose. Is it the same as or different from the pain as a result of which they gave the pred?

[Fifelassieo in reply to PMRpro]

It is different, it is more like a pressure over the eyes and also affecting my nose like a sinus problem, my eyes are extremely painful like they are bulging, l am so new to all these symptoms, my jaw pain seems to have cleared up, any advice is welcome, l am thinking of phoning dr as it is getting me down

[PMRpro Ambassador in reply to Fifelassieo]

Certainly check with the GP in the morning - but high dose pred can be a bit horrid I'm afraid.

[DorsetLady PMRGCAuk volunteer]

Hi

It could be - it is listed as a side effect.

I certainly had a headache for a few weeks after starting on Pred, but I always put it down to the fact I’d lost one eye and it was due to me getting acclimatised to that situation.

Whether it was that, the Pred or a combination of both I couldn’t say.

[SheffieldJane]

It could. I does need to be checked out by an eye specialist though because of the dangers of glaucoma though - a rare side effect of Pred I believe. Having said that, I experienced similar symptoms on 20 mgs of Pred accompanied by photosensensitivity and nothing significant was found. I felt very prone to eye strain and at one point I could not read or do screen work for long. Regular and thorough eyechecks are wise. I have a fantastic Optician, with all the equipment. I pay for checks whenever I get worried about cataracts etc. Good luck - I hope it settles soon. Conversely, at your early stage 60 mgs may not even be sufficient for your GCA symptoms. You need speedy advice from your Rheumatologist.

[Suet3942 in reply to SheffieldJane]

Are you in Australia Jane?

[SnazzyD]

I remember the eye bulging feeling and a feeling of sinus fullness. A local optician checked my eye pressures every 3 months, only took 10 minutes.

[Fifelassieo]

That sounds exactly what my symptoms are like, what was the outcome of getting the pressure taken and did the symptoms go away,

[BonnyQuine in reply to Fifelassieo]

Yes, it could be. But do check it out.

I started on 40mg pred for GCA, in Nov 2016. The GCA pain disappeared almost immediately - and then all the pred side effects kicked in. Loads! Amongst those was what felt like bad sinusitis - fullness and pressure, and what sounded like rice crispies - a sort of crackling sound with associated earache from time to time. Often used to wake up with sinus headache at that time, and I believe that was when I started to snore. Lost my sense of smell. Don't remember my eyes bulging, but they were very uncomfortable - exuding and watering all the time. They haven't stayed that bad, but still water a lot. Optometrist says my eyes are now 'very healthy for my age'. As I'm 72, not sure how good that is! But ok. So grateful not to be blind. I'm down to 6.5mg pred now. Still not the woman I used to be, but grateful for what I have, and pred side effects very much less.

Hang in there. It's a journey, but things will get better sooner or later.

[Fifelassieo in reply to BonnyQuine]

Sounds very similar thanks

[Hidden in reply to BonnyQuine]

I use a saline spray that helps manage sinusitis. It's usually a couple of quid in baby section of chemist.

Before PMR I had that eye bulging feeling all the time for months. When my bp was checked it was 202/101. Always been a bit high but was medicated then. The bulging pressing feeling went within a week or two. I know they say high BP has "no symptoms" but I swear it was my blood pressure. 🤔

[BonnyQuine in reply to Hidden]

If I wasn't on Candesartan, my BP would be something like that too. Raised BP is also a possible side effect of pred. Am waiting w interest to see if mine returns to 'normal' when I get off pred. Not holding my breath.

[Hidden in reply to BonnyQuine]

I was put on linsopril at that point having been on diuretics for years. It still ran a little high once on pred but Since I hit about 7mg it's come down. 145/67 last week and I am at 6mg. So you never know!!

[Painter-girl]

I had similiar feelings in my eyes when on 40mg pred for GCA 20 months ago, so asked my local optician for an appointment and he confirmed raised pressure in both eyes. He referred me to Opthamology Department at local hospital immediately who confirmed pressure was high and treated with eye drops for about a year with regular appointments in the Glaucoma clinic (although they reassured me it wasn’t glaucoma, but was ocular hypertension due to the pred). I am now monitored in the community with a participating optician and will be referred back to hospital should the pressure rise again. It seems in my case that as I reduce the preds so the eye pressure reduces. My eyes certainly feel different since having GCA. I hope you get your symptoms sorted quickly.

[BonnyQuine in reply to Painter-girl]

Interesting!. Thanks for info.

[Fifelassieo]

Thanks painter-girl

[Sho-Sho]

I have exactly the same symptoms, have had GCA for nearly 3 years and am now on 7.5mg of pred, strangely it has got worse since I reduced, have my eyes checked every 3 months and all fine, plus bloods checked regularly and also all good, so Rheumi thinks it is just the side effects of pred - yet another grotty side effect of the pred. My GP has prescribed a nasal spray which helps, but I would definitely get it checked out.

[Fifelassieo in reply to Sho-Sho]

Thanks for reply, l have got a dr appt next week

[Purplecrow]

Most of the others have answered the technical aspects of your headache question, so my contribution is merely to confirm that at my highest doses (between 20 and 15), I experienced a daily "pred headache ".

I suffered migraines headaches all my PRe-menopausal life, and pred headaches were nothing like the migraines. The pred headache was a nuisance, but manageable with paracetamol.

Kind regards, Jerri

PMR diagnosed 2013.

[Fifelassieo]

Thanks jerrri

[Hidden]

With headaches be sure and monitor your blood pressure.

[Fifelassieo]

Yes l have been. It is on the low side