Advice please

[Uride]

Hi everyone can you help me with some advice. Diagnosed 18 months ago GCA/PMR started on 30mg pred then very quickly up to 60mg to protect my eyes. Been slowly tapering down with all the usual side effects. Three weeks ago down to 7mg then relapsed agonising pain in groins thighs hips etc. Increased pred to 8.5mg still in pain but no so severe should I increase to 10mg if so for how long. So disappointed. Thank you for all the posts and ongoing support

[DorsetLady PMRGCAuk volunteer]

Hi,

Might be sensible to try 10mg for 4 or 5 days, see if it helps. If so you might be able to drop back down to 8.5 or even 7.5mg easily if you’ve caught it quickly enough.

But you are only 18 months in, so don’t push things too much, you are coming to a difficult dose for many, so the message is the slower the better!

I found with my GCA it took disproportionately longer to get from 10mg to zero than it did from 80mg to 10mg.

[Uride in reply to DorsetLady]

Thank you for your support in think I will try that it is how I have been thinking

Keep well

[piglette]

Adding 5mg and then going down seems to be a good solution rather than going up slowly. As Dorset Lady says try 10mg.

[PMRpro Ambassador]

If you relapsed at 7mg you might find a week of 12mg is what you need - that is what a lot of doctors suggest for a flare due to dropping too far. After up to a week you can drop back to just above where it happened. The only cavil is whether the flare was from overshooting or an increase in disease activity,

[Marijo1951]

Going by my own experience, you seem to have tapered very quickly. I was diagnosed with GCA and PMR 15 months ago, started at 60 mg pred per day and I'm now still on 15 mg per day. I did have two flare ups on reaching 25 mg per day, but was then prescribed methotrexate which seems to have helped me to reduce further without problems. I'm seeing my rheumatologist this Wednesday and expect to reduce the pred again. I'm also going to ask her if she's okay for me to stop the methotrexate to see if I can manage without it. I'm grateful for the help it's given so far, but don't want to burden my system with unnecessary meds.

[Uride in reply to Marijo1951]

Hi Thank you for the advice this tapering can be complicated. I have upped the Pred this morning oddly my Rheumy wanted me to reduce much more quickly it is by reading all of the experiences on the forum and my GP that we have stuck to a slower pace.

I wish you well at your appointment you are doing great good luck.

[Marijo1951]

Good luck to you too. We all need it!

[Sho-Sho]

You seem to have come down very quickly, as Dorset Lady says from 10mg down is very difficult. I was on 10mg at Christmas but have only just managed to reach 7.5mg - I am under a fantastic Rheumatologist with a long experience of GCA and she highly recommends no faster than a 0.5mg drop over 5 to 6 weeks at this level, but always wait until you feel right on your dose before dropping again.

Good luck.

[Uride]

Hi Thank you for info it is such a different journey for us all we are so anxious to get off medication I have upped Pred this morning and will take your advice. If my Rheumy had his way I would have reduced much faster so pleased for this forum a mine of great information. Good luck