Your support is wonderful

[Linda3009]

Thanks to all who have taken the time to contact me. It's good (if galling) to hear that I'm not the only one with a stubborn consultant.

I work as a hospital pharmacy technician and in my 40 year career, I've only ever seen one patient with GCA.

That doesn't mean that I don't believe in it though. . ....

I wonder if I could pester you for some more help?

Since my biopsy on Friday I've increased my dose to 50mg (previously did well on this dose)

Now however, I've got eye/cheek pain but not much fatigue.

I'm wondering if this is a post op problem or a flare.

All opinions welcomed. .........

[Hidden]

Hi linda3009, there seems to be a lot of them about.

I wondered if you had tried OTC painkillers as any op can cause ongoing pain. You will know in a couple of doses. If after a day or so it doesn't work then you can rethink and revisit the dose of pred. HOWEVER, if it feels worse or ANY eye issues up the pred and a and e. I am sure those who have actually had biopsy, unlike me, will have good advice and info re the post op pain. 🌻

[Linda3009 in reply to Hidden]

Thanks, yes I've been taking paracetamol but no relief so far.

Am considering increasing to 55mg and see if it goes away

[Hidden in reply to Linda3009]

I suspect that's wise. If you do and it works you know then.

[PMRpro Ambassador]

The trouble is when a flare happens because you reduced the dose ut us often harder to get under control. What did they tell you to do?

[Linda3009 in reply to PMRpro]

Ive had absolutely no direction other than to keep the dose as low as possible preferably 45mg.

I can't see my GP until next week and consultant appt is 29th of this month

[PMRpro Ambassador in reply to Linda3009]

Yes, well, as low as possible is right enough but it has to be enough to manage the symptoms. And then you stay there for a few weeks to be sure you are OK. THEN you can try reducing. CArefully.

[Linda3009 in reply to PMRpro]

I agree. GP started me on 60mg and I stayed on that dose for 9 days at which point I saw the ophthalmologist and he reduced it straight down to 40mg.

Since then it's been a struggle and I put the dose back up to 50mg myself for two weeks until my next consultant appt when he reduced it again to 45mg.

Following the biopsy on Friday he grudgingly agreed to go back to 50mg with proviso that I taper down as soon as possible.

I work in pharmacy and know this can't be right, but it's a different experience being the patient.

[PMRpro Ambassador in reply to Linda3009]

They should have left you at 60mg for at least 3 weeks - and then tried a drop to 50mg. Yes pred is horrible, high dose pred is even more horrible. But it beats losing your sight,

[Linda3009 in reply to PMRpro]

You're right. I find it hard to comprehend why the ophthalmologist reduced it so quickly.

I feel he's on a mission to prove its not GCA .

Meanwhile I'm out on my own.

Apart from you guys....😘

[PMRpro Ambassador in reply to Linda3009]

I wonder if he knows that some doctors start with an i.v. pulse therapy of up to 240mg/day - and it is thought to reduce the overall total dose and reduce relapses?

It just hasn't been looked at - there is too much risk of sight loss with a low dose but until they have something better than TAB for diagnosis it's a bit of a dead loss.

[Linda3009 in reply to PMRpro]

That's an interesting approach. I'm going to do some research tomorrow.

Thanks again for taking the time to chat. I really does mean a lot

[Hidden in reply to PMRpro]

Surely that's a better first start for GCA? Probably would just take a bed up for a bit. I know there are potentially other diagnoses that both the symptoms can be and treatment can address, but to potentially save sight and decrease total dose etc seems a better protocol in these kinds of cases.

[PMRpro Ambassador in reply to Hidden]

It really would help if they sat down and thought about it ...

[Hidden in reply to PMRpro]

That trying to combine good practice and commonsense.....not good odds.

[lesley2015]

Hi Linda3009

Sorry you are struggling so.

I was initially put on 40mgs for GCA, (4 years ago), but a recent flare up necessitated me going up to 60mgs ...... it took a while to calm it down, now I am reducing nicely again. When I have a flare I have eye and cheek pain, mostly on one side .... for me it comes with the GCA.

Consultants!! On my second and this one is only marginally better than my first ... mainly because I don't get to see her, I usually see the registrar who changes each time ... all they seem to want to do is reduce the steroids, muddy the water with other diagnoses as add-ons and add further medication - my GP is good though.

Hang on in there, it will get better ..... and PMRPro is right the high dose of steroids is nasty but the alternative is worse.

Good luck

[Linda3009]

Thanks Lesley.

It's been really good to hear from people who have been through this.

I'm trying to stay positive, and visiting this forum is a huge help with that

[jinasc]

Linda3009, it is hard at the start, but the more knowledge you gain the better and with a good Consultant and GP you will get through this just remember you are still a person as well as a patient and knowledge is power.

I was started on 60mg and left there for one month until I saw my Consultant again. I did not have a biopsy because I had been on 60mg for 4 days and the Consultant said, "waste of time and money".

I saw him one month later and he reduced it to 55mg told me I would probably need to wait 5 days before it settled down, if it did not settle down, go back and wait a couple of weeks and try again. He went down at 5mg a time, till I got to 20mg and then a flare, back to 60mg and then down slowly but quicker drop this time, but never more than 10%. 2nd flare, but this time back to 40mg and down again...............this time with no problems and when I reduced to 10mg, by this time we had met Ragnar and DSNS and TAH had been devised. 5 years and remission.

I saw my Consultant every 3 months without fail. If there was a problem my GP called him and it was sorted out. My GP had never had a case of GCA, but one of the partners did. I could not have been in better hands.

I did not have a smooth ride, side effects grrrrrrrr, the only one I liked was the moon face, it had my chicken neck and I was sad to see my moon face go.