Call from doctors 2am about GCA and ESR levels

[Flrchrs]

Call from Doctors 2am !

Had a consultation with a rheumatologist yesterday because of the new GCA and bloods done they called to say my ESR levels had increased from 49 to 60 even though I’ve been on 40 mg pred then 60 mg for four day and back to 40 for the past two weeks . Been saying the headaches are unbearable for the past for weeks. Middle of the night what can I do till the morning.would have been better to call at 8or for them to call doctors and they call me.

One last thing is 60 very high?

Time for a cuppa I think

[HeronNS]

Yes it is high. Is there an emergency line you can phone to get advice about taking an emergency dose of pred until you can be properly cared for in the morning? The issue as you undoubtedly know is saving possible damage to your optic nerve. If not, perhaps you should take extra pred right now to get your daily dose back up to the 60 you'd been taking until recently? Obviously no one on here can advise you as to dosage, etc, or increasing above what you have already been taking. Kind of shocked they would call you at this time and yet not give you advice about what to do.

[Flrchrs in reply to HeronNS]

Thank you for replying. Yes crazy time to call . Think I will take 60 now instead of 40 at 7am . Kept say to doctors and rheumatologist that the headache was so bad . He was saying yesterday two more weeks at 40 mg then reduced to17.5 mg over 3months . Think that might change

[HeronNS in reply to Flrchrs]

Yes. I think it should change. Do keep in touch with us and let you know how things go over the next few days. I'm signing off now because it's late (after 11 in my time zone), so have your cuppa, a bit of food and your medicine, and I hope you get some sleep. Best wishes. 🍀

[DorsetLady PMRGCAuk volunteer]

60mg is high yes, but some of us have been on higher…..

Strange response from hospital- as HeronNS rightly says should have given course of action, not just results, but hopefully you can speak to Rheumy Dept this morning….and get guidance.

You have done the correct things in taking extra, but it may still take a few more days, or a slightly higher dose to get headaches fully under control.

Please keep us informed, and good luck.

[PMRpro Ambassador]

It IS high but these things are relative - if you need 60mg to keep the inflammation down, that is what you need, 80mg is often needed and one approach to GCA is to give 3 days f infusions at up to 1000mg per day - needless to say, that is done in hospital.

WHO rang you at 2am to tell you that? In the UK at 2am there are two options - 111 and 999 and 111 does give you access to a doctor out of hours.

But I don't think you will be aiming for a reduction to 17.5mg over the next 3 months somehow - if they suggest that, I would be seeking a second opinion.

[Flrchrs]

Just had a call from rheumatologist department. She's going to try to find out who called at that time in the morning. Call back this afternoon if I need different medication dose. Surely I need to go up if esr is going up . They're the experts🙄 good this forums here

[jinasc]

No I started on 60mg and know others who have had to go into hospital and given higher doses intravenously. The aim is to get it under control and then slowly come down - and I mean slowly.

I was called (can't remember but think it was 111) like you at around 2am when I had got to 40mg and told to up the dose by another 20 mg straightaway. I did as I was told. Them my GP called at 7am to ensure I had taken it. They will do anything to protect your sight.

It took me 6 months to get down to 40mg...............

PS: My index finger is out of action and typing is difficult please excuse errors.

[Flrchrs in reply to jinasc]

Can’t really complain they are doing their job . Got rheumatologist calling the afternoon too. After 5.5 years of PMR . Now this . As the lady at work said . Now you’re over 60 you over the hill . Replied ‘yes I’m charging down the hill now

[piglette]

60 is high but my ESR floats around the 50 mark most of the time and every so often goes over 100. The highest it has been is 415! My doctor just ignores it and my high CRP now and calls them both SATISFACTORY!

[Sharitone]

I think the standard is 1 month on 60mg, then decrease by 10mg each month down to 30mg, all being well. Good luck!

[jinasc in reply to Sharitone]

Sharitone, that was changed some while ago (someone else might remember the date.

No more than 10% at a time so 60mg = 6mg drop.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

Trouble is the guidelines don’t reflect the 10% - I know we always refer to it, but is it actually quoted anywhere… ..would be very useful if it was.

T link from charity’s page to BSR/BHPR guidelines still quotes /

Suggested tapering regimen

. 40-60mg prednisolone (not <0.75mg/kg) continued for 4 weeks (until resolution of symptoms and labora- tory abnormalities).

. Then dose is reduced by 10mg every 2 weeks to 20 mg.

. Then by 2.5mg every 2-4 weeks to 10mg.

. Then by 1mg every 1-2 months provided there is no relapse [46, 47

[PMRpro Ambassador in reply to DorsetLady]

The 10% bit came from endocrinologists I think - but you can't imagine the average rheumy listening to that can you?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes, that’s the problem isn’t it… never mind, we shall keep quoting it!

[PMRpro Ambassador in reply to DorsetLady]

It's about titration of a medication to find the right dose for this patient - and they aren't used to doing it this way round. With BP meds you start low and work up - but as we know, it doesn't work for PMR and would be disastrous in GCA.

[jinasc in reply to PMRpro]

I have an idea it came from John Kirwan..........will try and dig into the whole heap of stuff I have not looked at for years.

Do you remember this: posted 7 years ago. Sent you a PM with the link

[Sharitone in reply to jinasc]

Oh dear, someone had better tell my rheumy! A month for each 10%?

[PMRpro Ambassador in reply to Sharitone]

At least 3 weeks - sooner you don't know if the new dose is still enough. To be fair - at the very high doses 10mg is probably OK providing they take a month before the next attempt. The lower you get, the more important it is to not go in leaps and bounds. It may sound slow - but it avoids the trap of overshooting and having then to go back up but not having a clue where it all went pear-shaped. It isn't slow when it works

[DorsetLady PMRGCAuk volunteer]

Yes appreciate that - but until it’s written down, some Rheumies will still go by the old regimes…