Lowering from IV pred

[Pippah45]

Hi lovely people - I have a virtual friend in hospital who has had a terrible journey getting a diagnosis - but finally it seems to be PMR and GCA plus possibly Lupus. She is in hospital abroad and I am wondering if her IV dose to oral dose went down too quickly. Did I dream it or is there a percentage number for dropping the dose? Something like 10%? I know someone said I had dropped too quickly from 15 to 12.5 my body agreed with that - a certain amount of visual problems - I shall drop by 1 next time.

[DorsetLady PMRGCAuk volunteer]

Hi

Recommendation is not more than 10% of current dose certainly for lower doses.

But in respect of the initial high doses for GCA it’s not always followed- for example mine went from 80mg to 60mg after 2 weeks - when everyone happy remaining eye ok. But then stayed at 60mg for 6 weeks.

Change from high IV dose to oral dose may be more difficult to balance - as I don’t have personal experience of IV cannot comment - but hopefully correct protocol was followed.

Are you asking because she still has symptoms?

[Pippah45 in reply to DorsetLady]

Basically yes she says she is climbing the wall in pain!

[PMRpro Ambassador in reply to DorsetLady]

Um - 100%????

[Pippah45 in reply to PMRpro]

A zero too many?

[DorsetLady PMRGCAuk volunteer in reply to Pippah45]

Corrected! Although some doctors might prefer!

[PMRpro Ambassador]

The i.v. pulse dosing that is used in early GCA by some doctors is only for 3 days - and then the patient transfers to a more usual oral dose, sometimes 80mg but more often 60mg/day. Experience with the i.v. pulse dosing show it is possible to reduce quite quickly - the i.v. level is massive and clears the existing inflammation very quickly so there is less need for the high oral doses at the start. Overall, they have found that the total or cumulative dose is lower over the course of treatment.

The 10% rules is for lower doses, although 5mg at a time is easier for many patients to tolerate than the 10mg at a time often seen in GCA to start with. Many do manage the 10mg at a time down to 30mg well. It is more important in PMR where you only start at 15 or 20mg - and for either once you get to 10mg daily dose and you are looking for adrenal function to return.

Where is she?

[Pippah45 in reply to PMRpro]

She is somewhere in the Middle East but the fact that she is in great pain seems wrong to me.

[PMRpro Ambassador in reply to Pippah45]

Do you know the details of the pulse therapy? Did it work? Do you know what dose she is on now?

[Pippah45 in reply to PMRpro]

She was certainly out of pain when having the IV - but she seems to think it was 1000 IV pred dropping to 80 mgs - I think she must be confused. She has been sent home and reports that she is climbing the walls.

[PMRpro Ambassador in reply to Pippah45]

No - 1000mg in the pulse therapy is perfectly possible. What pain is the problem? But she must get back to the doctors if 80mg isn't holding it, that is a high dose for GCA anyway.

[Pippah45 in reply to PMRpro]

I have told her to get back to the doctors - I think she is only on 60g and it's jaw and head pain the worst but shoulders and arms as well I think. She needs to come on here and do things first hand. Thank you very much for your help.

[PMRpro Ambassador in reply to Pippah45]

It COULD be the pred itself - the shoulders and arms are not due to PMR at that dose. And pred can cause headache. But she must go back to the medics. If she doesn't tell them - they can't know.

[Telian in reply to Pippah45]

Sounds similar to me when I was first diagnosed - wasn’t on IV but from my first taper I got terrible headaches which turned out were withdrawal symptoms - they go after a few days but were painful - very like the GCA so is scary as you worry about your sight. I took paracetamol which didn’t get rid of the pain entirely but made it more bearable. I’ve been like it with every taper - just got down to 8mg and suffering withdrawals. I’m 6 years GCA & PMR.

Your friend does need to speak to her doctors. You’re a good virtual friend.