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[Stellamavis]

Diagnosed PMR in 2015 started 10mg Pred pain free after 4 days..lowered dose 1 mg a time every 8 wks ok till pain returned then upped..then lowered over time got down to 5mg all ok lowered down to 1 mg over time..great will be off meds soon..no chance had a very bad flu at time of COVID and all joints were excruciatingly painful..cried over phone to doctor who raised dose back to 5mg in 2021 all great at this point until a few weeks ago totally pain free but then tender scalp over a few weeks and then headache morning through to night for 2 weeks re read info on PMR sent me to a link about GCA phoned docs called me in for tests sent me for scan 2 days later on temporal artery..all seems fine but doc pushed up my meds from 5mg to 40mg and I’m struggling as it’s making me whoozy the whole day am so out of balance some days I’ve only managed to get 30 mg in..next lot of meds will be 2x20mg and coated so that may help with the dose but why am I feeling my head is connected to a spring..also the headaches stopped by next day but am getting a little tension on upper left side..it’s the loss of sight I fear if I don’t stay on 40mg for next 4 wks..will gradually be lowered later and eventually put on methotrexate as now in my 6th year of steroids..feeling very low today

[DorsetLady PMRGCAuk volunteer]

Sorry to hear you have now been diagnosed with GCA, but whatever the side effects (which should diminish as your body gets acclimatised to bigger dose) you do need to take 40mg, however difficult that might be.

To be honest taking 40mg some days and 30mg on another is probably not helping your body either and certainly not your GCA.

You need same dose every day at this stage.

The fact that your headache seems to have gone is good news, shows the dose is working.

Would suggest the tension is from you worrying about sight loss, which is understandable (I know), but to be honest, counterproductive.

If you have any sight issues, however minor, then get immediate medical attention, if you don’t, then stop worrying.

Just let the Pred do it’s work.

[Stellamavis in reply to DorsetLady]

Thanks for your reply I have found so much good advice on this forum, yes will continue with 40 mg as doctors orders and my new prescription is due soon and will be enteric coated 2x20mg so will be taken just twice a day instead of 4 times of 2x5mg which for one reason or another I couldn’t seem to fit into mealtimes..breakfast lunch and teatime meals are ok it’s the last dose at bedtime that I end up missing (only a couple of nights) as my stomach reacts severely as also have gall stones so take 300mg ranitidine as and when it flares..have been on lansoprozole since start of steroids 2015 and am taking dispersing aspirin since last week..also had 2nd Pfizer vax day before doc appt which was fine on day but worse symptoms the following day at docs...also on here some say they take their pred in the early hours this has never been suggested by any doctor..I feel frustrated that we find this info on a forum like this rather than our doctor who who you trust to keep you informed with much needed info to help ease us through it

[DorsetLady PMRGCAuk volunteer in reply to Stellamavis]

Well, actually the Pred should be taken as one dose in the morning with/after breakfast - if you’ve been taking it at 4 separate times that’s maybe why it’s had the affect it has.

Not sure why your doctor told you to take it as he did....GCA patients in particular are recommended, particularly early days - one dose.

The early morning is sometimes suggested on here, if someone is having really issues with symptoms before the morning Pred kicks in. But that’s patients advice, don’t know that most doctors would think of that.

Unless you have other issues, then it’s not usual for aspirin to be added in nowadays...

Just be aware that the enteric tablets take longer to get into your system - so in your case maybe you’d be better sticking to tge twice a day regime ...... I never took the enteric kind so not sure, others who have will be along to advise.

The only thing I wonder about splitting your dose, is does the tapering become a bit more complicated as you get lower - but that’s for another day.

Please let’s us know his you go on.

[PMRpro Ambassador]

I'm rather concerned about you being told to take 10mg 4 times a day - it is particularly important in GCA to take the dose all at one to achieve the greatest antiinflammatory effect. The effect lasts 24 hours for many patients and the idea of the high dose is to reduce the inflammation quickly. If you are switching to enteric coated, the highest level in the blood tends to be lower than with plain pred.

To the best of my knowledge, e/c pred doesn't come in 20mg doses, just 2.5mg (brown) and 5mg (red) tablets.

[EggAndBacon in reply to PMRpro]

Just for info, e/c pred also comes in 1mg yellow tablets.

[Stellamavis]

Thanks for your reply I’m feeling less anxious after reading posts related to all this..my doc is due to place a new prescription so in a day or 2 i should be on 2x20mg tabs...he’s a very young doc and this maybe new to him as it is to me at this stage..up until the tender scalp and headaches I was coping nicely on 5mgs everything seemed back to normal it’s the shock of reading into the GCA that has made me fret...so I’m trying not to let it get into my head..thank goodness for this forum the only place that I feel sufferers expressions won’t glaze over at the mention of this ailmant that has taken me by surprise..even though I’ve had it for going on 6yrs although probably in hips for much longer and treated as anything but PMR..it’s the feeling great on a certain dose then drop a mg and whoosh all change not for the better...outwardly all looks fine as we take our meds and it’s controlled so friend’s and family don’t see us at our worse (mine don’t) so they are the eyes that glaze over so I’ve not mentioned how I have really felt over the years..sorry I’ve waffled on a bit it’s easier to chat to a screen and let little bits out the release feels good..thank you all x

[PMRpro Ambassador in reply to Stellamavis]

No problem - it's why we are here so you do have a place to vent without explaining it all.

[Stellamavis in reply to PMRpro]

Just phoned docs for emergency prescription as not had enough prescribed when had all tests for GCA about 10 days ago..have to collect from any chemist via a code he has just sent me so will collect tomorrow as only have one dose of 40 mgs left and 2 more weeks of taking them..oh the stress of this situation..I have followed advise on here and have now been taking 40mgs in one hit these last couple of days and am feeling less whoozy as time goes on..I think out of 10 days 3 were less than the full 40 mgs ..I was also prescribed 75mg dispersable aspirin taken daily..I think my blood pressure was a bit high as he took it 3 times and then prescribed. I think in a day or 2 I will be a lot calmer about the whole thing it’s just the not knowing how serious this all is or can be..am so grateful my daughter found this forum for me..I think I’d bumble along taking all info from docs and accepting this is it from now on..but I found a lot of help from so many different situations of sufferers thanks to you all I’m breathing a little easier ....

[PMRpro Ambassador in reply to Stellamavis]

You are getting there ... It will get better, promise ...

[Stellamavis in reply to PMRpro]

The emergency prescription was not the enteric coated which I received but am happily taking the whole 40 mgs in one hit..the whoozy feeling has subsided..thankfully...and have managed to get a phone appt today with a doc but not my usual doc