OUTCOME OF APPOINTMENT: Hi there :) saw GO as... - PMRGCAuk

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OUTCOME OF APPOINTMENT

Hev1964
Hev1964

Hi there :) saw GO as originally planned - CRP still raises, told him about the retinal auras ans left sided head/eye pain etc. He phoned hospital, spoke to opthamologist first, then a physician, ,for advice. After fairly long conversations he came back saying suspected GCA along with my PMR. My 10my was increased to forty until next Monday when they want bloods again and evening appt with him by which time he will have result of CRP. . Have been given 75 mg aspirin to take alongside the Prednisolone and to take EIGHT aspirin if I have another aura! (at present they are approximately weekly). Any thoughts on this would be much appreciated -is 40 mg sufficient? Many thanks xx

37 Replies
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PMRpro
PMRproAmbassador

If it stops/greatly reduces the symptoms it's enough - and far better than 10mg anyway!

I think 60mg is seen as the starting dose if you have any visual symptoms - a weekly aura doesn't sound too suspicious but you never know I suppose. What on earth are the 8 low-dose-aspirin supposed to do? If I were to have visual symptoms I would be taking the extra pred (rather than the aspirin) and hot-footing it to A&E at the same hospital if that is possible.

Hev1964
Hev1964 in reply to PMRpro

Thank you. Yes I wondered myself about the aspirin, not seen anyone else saying take extra aspirin with an aura. I do also have left sided head/eye pain and sore temple area, as well as the auras. It was a consultant physician that gave my HP that advice, not a rheumatologist. I will see how the week goes and if it removes the eye/head pain and the auras I will be happier sitting at the forty than sixty and them move forward. Does that sound reasonable do you think or should I see a rheumatologist for specialist advice? X

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Hev1964

As PMRpro says 60mg is the usual starting dose with eye problems..and I would be happier for you to start at that. 40mg may well be enough, plus of course it can always be increased if necessary, although I would rather go high to start with, but that’s just my view.

As for the aspirin, I can only imagine he’s thinking the aura may be signs of something else. My late hubby had angina, and if he had a bad attack, or suspected MI the first thing the ambulance paramedic gave him was 300mg of aspirin.

But as we say, any further problems - straight to A&E.

Hev1964
Hev1964 in reply to DorsetLady

Aw thank you. The auras were diagnosed as not being associated with migraines and just atart d along with raised blood pressure round about the time the PMR was diagnosed (October). Thank you for replying to me and giving advice - don’t think my go very ezperienc d in it but at least he did phone and ask for advice from those he thought New better. Will give the new regime a go and see how it goes x

PMRpro
PMRproAmbassador in reply to Hev1964

If it were me I'd give the 40mg a day or maybe two at most - and if the symptoms weren't greatly improved, would go for 60mg.

In-house paramedic says aspirin is given to break down any clot. I have to say I'm not sure it would be a clot you have to be bothered about but I don't know. Take the aspirin - one-off no harm done. Unless you have a duodenal ulcer - in which case, don't...

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Hev1964

As PMRpro says 300mg aspirin stopping clotting by thinning the blood so maybe advice was more aimed at HBP rather than GCA, but as she also says if no marked improvement on 40mg then 60mg should be discussed.

Hev1964
Hev1964 in reply to DorsetLady

They seem to be basing the diagnosis on when Ingo next Monday, if symptoms not gone then probably not GCA? Not sure what they would intend so do if the forty doesn’t help? They don’t appear to have much knowledge of it. Then again I am in the North of Scotland and don’t know how many cases they would come across regularly up here :/

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Hev1964

Actually Scotland seems to be ahead of the game, they have their own website, and a good infrastructure - but I guess it depends how far north you are! It’s them Vikings again!

We spent 2 years in the Outer Hebrides in the 1980s when hubby was at RA Ranges on South Uist, lived on Benbecula! Bit wild and woolly there.

Hev1964
Hev1964 in reply to DorsetLady

Oh well that sounds useful I will look into that! Not that far North , thankfully, Inverness, just not sure how prevalent it is that GPs would know exactly the best reaffirm etc . I will communicate with doc next Monday though. ThNk you :) x

PMRpro
PMRproAmbassador in reply to Hev1964

The first charity and website was the Scottish one and they advised on the setting up of the NE of England charity and site. They are based in Dundee (or maybe Perth, it isn't clear, it was Dundee)

pmrandgca.org.uk/

They have a helpline - you can't choose where you go but they may be able to help. There is also a Highland support group run by David Carrot and who are having a meeting on 24th Jan in the Spectrum Centre:

pmrandgca.org.uk/highland-g...

They organised a Scottish rheumatology meeting about PMR and GCA in Glasgow - it has at least the same status in Scotland as England. If not higher.

Hev1964
Hev1964 in reply to PMRpro

Many thanks am joining them at their meeting next Wednesday. X

Hindags
Hindags in reply to Hev1964

Hev1964, I was told by a Rheumy when I was first diagnosed with PMR that should I develop any visual symptoms of GCA that i should take 80mgs of Pred and an 81mg aspirin and get to the emergency. Are you sure your heard 8 low dose aspirin or was it an 81mg low dose aspirin or "a" low dose aspirin.

I hope he wrote that down for you. So easy to hear the wrong thing. LOL

Hev1964
Hev1964 in reply to Hindags

Thank you! Yes I had hubby with me and it’s written down. I will clarify with him next Monday if that’s what he meant to say - he was taking instruction himself over the phone at the time so maybe wrote Aspirin instead of Pred as was scribbling quickly the info being given. Don’t think it was to so with my BP as it’s being treated and wanted even mentioned during the consult :/ will definitely double check though, thank you xx

Not sure how you would be able to take 81mg of aspirin?

They are made as 75mg or 300mg tabs.

81 mg and 325 mg aspirin in US.

Aah. OK. Thanks

I don't know if it is working but I was having 2 aura's a week ... since PMR and prednisone but now am taking CoQ10 and so far haven't had another. I am HUGELY influenced by placebo..so have no idea if CoQ10 works...really or if it is quackery. anyone? but mind you I do NOT have GCA and would go directly to doc if I had other symptoms

Hev1964
Hev1964 in reply to yogabonnie

Thank you so you feel the PMR caused the aura of the mess’s? My auras started before diagnosis (just a month or so) stopped on 15mg but started again on 10 mg x

I have had them but not so often.. and more after PMR.. but also when I tried to cut back the prednisone they seemed to come. do you have OTHER symptoms of GCA? Like pain chewing? more I think when you chew... but I need to stop here because I do NOT KNOW anything about it.

Hev1964
Hev1964 in reply to yogabonnie

Yes, I do, jaw problems there before PMR was diagnosed but symptoms just weren’t linked at appointments I don’t think. (Other things going on at the time as well). But yes, side of head pain and headache on left side and exhausted, ridiculously so :). Thank you for replying though, all input is useful to me x

Definitely good you seeing Doc! listen to Dorset Lady and PMR pro! Good luck. !

Thank you! :) x

Although I'm sure I've read recently that this is no longer considered the case, can't remember where, the literature which pops up when searching Dr Google suggests quite strongly that aspirin does indeed deal with the same type of inflammation as pred does in GCA and people taking aspirin have better outcomes. I'm puzzled why baby aspirin doses are recommended, the kind used for avoiding heart conditions. Wouldn't one or two adult aspirin be more convenient if zapping GCA symptoms?

PMRpro
PMRproAmbassador in reply to HeronNS

The aspirin in GCA has been recommended in the hope of reducing the incidence of cardiovascular events associated with GCA - there is a raised risk in the first year or so after diagnosis. That's why it is the same dose as for cardiac prevention.

HeronNS
HeronNS in reply to PMRpro

But 8 of these little tablets - that's what I was questioning. Why not a regular size tablet?

PMRpro
PMRproAmbassador in reply to HeronNS

My suspicion is that something may have got lost in translation. But if you have a patient on low dose aspirin they will have low dose aspirin in the house but probably won't have any normal dose. And I believe low dose aspirin now comes enteric coated. Ordinary probably doesn't.

HeronNS
HeronNS in reply to PMRpro

I guess I have a cavalier attitude towards aspirin as it's my go-to painkiller for headache anyway, so I always have a supply of extra strength aspirin in the house. And uncoated because coated takes too long to work. Why are people so afraid of aspirin yet quite okay with naproxen. It was naproxen which hurt my stomach, I'll never use it again. Acetaminophen is generally ineffective, ibuprofen is contraindicated for me. Aspirin I understand and find effective....

PMRpro
PMRproAmbassador in reply to HeronNS

Why is ibuprofen contraindicated for you? It is also an NSAID, no different from aspirin. I have been told NO NSAIDs - end of.

HeronNS
HeronNS in reply to PMRpro

There is something I read which owing to family history of brain haemorrhage indicated not good idea. I've checked on this a couple of times and get the same result. But I don't need anything besides aspirin, although very occasionally I find a dose of codeine helpful if I need to get over a headache a bit faster. Anyway seems like stupidity to take a chance on ibuprofen even if the risk is small. My daughter used to use it until I learned this information. I think I've posted here or on Patient the fact that three members of my family have had a brain haemorrhage, my mother and two first cousins.

PMRpro
PMRproAmbassador in reply to HeronNS

I suspect you may find that all NSAIDs pose a problem, not just aspirin. Though it is worse in combo with other medications - and i'm not sure if pred counts.

HeronNS
HeronNS in reply to PMRpro

I don't have problems with aspirin. It's all the others. :D

Hev1964
Hev1964 in reply to PMRpro

Yes Inpresume that is why they said to take those. As they have given them to me. All instructions given to me by the Go were also written down by him so fortunately no confusion. I will however clarify on Monday whether I am required to just take aspirin in the event of an aura or take prednisolone too, which is probably what I would have been more likely to do anyway. Thank you for the information it’s all very useful :)

I am interested in what kind of aura you had and one sided head aches. It sounds so familiar.

Thanks

HeronNS
HeronNS in reply to dinhal

Actually sounds like migraine.

Hev1964
Hev1964 in reply to HeronNS

Had these at the end of last year when I had a BP problem and eye people found they were ocular auras - eye based as opposed to head based, not linked with migraines or classed as migraines. I have however had migraine headaches, for many years, quite severe ones and interestingly never had one aura over all the those years. NEedless to say the auras were a bit scarey when they randomly appeared, :/ getting used to them now though x

HeronNS
HeronNS in reply to Hev1964

That's interesting. The human body is so complex. I read a long time ago that geriatrics is actually more interesting than obstetrics or pediatrics. It's because most babies are much alike, even children aren't that different, but by the time you've lived most of your life you've become an interesting unique case!

Re auras, I occasionally get those classic zigzag patterns, sometimes without even getting the headache. I'm unable to focus on things in the centre of my vision for a few minutes, then it travels to the side out of my field of vision. I guess that is in my brain because it's not one eye, seems to be in the space in front of me. I can imagine your first experiences of the ocular aura must have been disconcerting to say the least! Have they lessened since you got your BP under control?

Yes apparently the one eyed thing is what makes them different. No, :)!BP treatment didn’t but when I got pred for the PMR they stopped! When I reduced from 15 down to 10 the auras started coming weekly or more! Not had one this week since being on the 40mgs interestingly enough!

Ps! I’m only 53! :) :) :) x

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