How much to increase Pred.

[SurreyFlower]

I saw my rheumatologist back in June and have been tapering very slowly from 15 down to 12.5 Prednisolone (for PMR) . In all honesty never totally pain free (except for the initial magic couple of weeks on Pred) but manageable for most of the day and no sleep disturbance. However this last 10 days the pain has been getting worse particularly in my legs and even uncomfortable during the night.

My rheumatologist isn’t available until 28th September for a telephone consultation. It was suggested by his assistant that I go back up to 15 for a few days and then straight back down to 12.5. Sadly this has given no relief.

Would others think it advisable to increase the dose even more ?

Many thanks for your thoughts

[PMRpro Ambassador]

The stage you have got to I would doubt that a few days at 15mg is long enough - it is always more difficult to get a flare under control once you have been on pred for a while. Top experts recommend adding 5mg to the dose where you flared before dropping back to above the flare dose. That would be 17.5mg.

Assuming this is definitely PMR there are two things to consider. 1) is it progressing to GCA? But far more likely is 2) have you adjusted your lifestyle and activities to accommodate PMR? The pred only deals with the inflammation - the actual autoimmune disorder is still active, grumbling along in the background and leaving your muscles intolerant of exercise. Do too much - and that is far less than it used to be - and you will suffer payback!

[SurreyFlower in reply to PMRpro]

Thanks PMRpro. No GCA symptoms. I’ve had several blood tests to rule out RA, cancer etc. ESR & CRP levels at recent blood test negligible but as we know and, Dr Hughes acknowledged , no true indication . I’m just so reluctant to yo-yo again back up to 17.5 but I guess needs must. How long would you suggest to give it a try ? Go straight back to 12.5 when things are improved ?

Thanks for your time

[PMRpro Ambassador in reply to SurreyFlower]

This isn't a semi-permanent yoyo (if you see what I mean) - and just a few days should be enough. Just as 15mg might be enough if you stayed there a lot longer. Like emptying a bucket using a beer glass rather than a shot glass...

If the increase in symptoms happened at 12.5mg that suggests that you might not be ready for that low yet.

[SurreyFlower in reply to PMRpro]

Thank you that makes sense.

12.5 does seem to be a sticking point for me ...

[Loyd]

I had a similar experience. After tapering too fast from 15mg down to 3mg I had a massive flair and went back to 15mg which didn’t help much. My doctor put me up to 30mg for 4 days which worked immediately and I’m now on 20mg and going to go sooooooo slowly down from here on. Hope you get some relief and you find the right dose. 👍👍

[SurreyFlower in reply to Loyd]

Thank you so much. I have been tapering very slowly. I’m going to bring up the possibility of LVV with my rheumatologist as I don’t really feel I’ve been anywhere near stable since my diagnosis in December. Another lady in my local support group had a similar experience where she could not get below 12.5. and became very poorly. She was subsequently diagnosed with LVV.

As a back up ,before my telephone consultation with my rheumatologist, I contacted my GP surgery yesterday late afternoon . In all honesty, despite the surgery having been very good, I didn’t expect a reply until after the weekend but within the hour a GP called me back! He confirmed PMPro’s suggestion to go up to 17.5 for a while and if it wasn’t working to call them back on Monday .🤞

Once again thanks fir your kind thoughts

[Suffererc in reply to SurreyFlower]

What us LVVplease

[PMRpro Ambassador in reply to Suffererc]

Large Vessel Vasculitis. Probably GCA attacking the large arteries in the trunk, including the aorta, causing vasculitis, inflamed blood vessels. It isn't called GCA because that is a specific form of vasculitis characterised by very large cells with multiple nuclei and they can't biopsy the arteries without a major operation so it is only done on the temporal artery.

[Suffererc in reply to PMRpro]

Thank you

[SurreyFlower in reply to Suffererc]

Apologies ! I’m always telling my husband off for talking in acronyms 😀

[Cpires2323]

Just read the entire exchange above, you all are so amazing! Over the moon that I found this support group.

PMRpro, you are a superstar! Thank you, thank you, thank you! So much valuable information!

Thanks so much to all of you in the group! 🙏🏻💕