Update and a few questions

[Mischevious]

Thanks to people who replied to my previous post. Here is an update, as suggested by them and a bit of a moan.

First the good news. 60mg prednisolone for three days, now 40 mg daily, as advised by the rheumatologist, feeling much better, almost human again. Biopsy arranged for next Monday, 7:00 a.m.so an early start to the day.

I am disappointed to find how the NHS has deteriorated since my last bout of gca, twice I have been given prescriptions by doctors that are not completed correctly and so pharmacists will not accept them. Over the past week it has been a constant struggle to get medication and appointments. It is useful that I know the ropes from last time. Does anyone else experience such difficulties?

Other aspects that I would like advice upon if someone does know the answers would be appreciated.

Last time I was given a steroid card to carry at all time. This time it has not been mentioned, are they still used?

Also last time I was prescribed 75mg aspirin daily and given gastro-resistant prednisolone tablets. This time I was given aspirin by the A&E GP but the rheumatologist said that aspirin not needed.

I asked about gastro-resistant prednisolone and was told that there is no value in having it but find that I have been given them.

Hope that I am not asking too many questions but I am not sure now what I should or should not do or be taking.

[DorsetLady PMRGCAuk volunteer]

Hi

Thanks for update.

My thoughts on comments

As you know biopsy might give a false negative as you’ve been on steroids. But you probably already know that.

As for incorrect prescriptions - no excuse - but GPs are under s lot of pressure. Can only suggest you check once collected before you leave surgery - unless they are automatically sent to pharmacy - then obviously you can’t. Appointments - think everyone is in same situation.

You should still carry blue card. Pharmacy should have some, but can be downloaded from internet. The charity used to send out every year with membership details - not sure if that still happens.

Think aspirin had been discontinued for everyone - but is still prescribed on an individual basis if required based on patients circumstances.

Gastro resistant tablets save having a PPI - but usually you have to request them - unless you already have gastric problems.

Think it’s a bit of right hand/left hand with your GP! Not very helpful for you though.

Let us know outcome of biopsy - but at least you are being treated for GCA - so that’s good.

[PMRpro Ambassador]

It has been decided that the risks associated with the aspirin outweigh the benefits. Otherwise - what DL has said

[Ansteynomad in reply to PMRpro]

That’s interesting. I was given aspirin at my first GP appointment and told to continue it by the doctor I saw at the hospital.

[PMRpro Ambassador in reply to Ansteynomad]

It was included in the last guidelines for managing GCA (from about 2011 I think) but they are working on the up-to-date version, have been for about 3 years or more now! Prof Dasgupta presented a paper about the new ones at a Scottish PMRGCA meeting in Autumn 2016:

pmrgcascotland.com/wp-conte...

They still haven't been published despite promises at the time they would be out in the following year. I suspect this is all due to disagreement amongst the rheumatologists involved. Which hardly augurs well for patients does it?