tapering on GCA

[Renaissance]

Hello everyone

I've only posted once before and I thought I was doing fine, if slowly! I was diagnosed with GCA (only) at the beginning of January and this was the pattern of my pred intake:

80 mg intravenously for 3 days

60 mg for 2 weeks

30 mg for 2 weeks

25 mg for 2 weeks

20 mg for 2 weeks

17.5 mg for 2 weeks

15 mg for 2 weeks

12.5 mg for 2 weeks

10 mg for 4 weeks

9 mg for 4 weeks

and then bang - a relapse with a CRP of 24.2

so 20 mg for a week

30 mg for 2 weeks

then change to methylpred

16 mg (equivalent of 20 mg of pred) for a week

and now and for the next month at least

14 mg (equivalent of 17.5 mg pred) methylpred one day

12 mg (equivalent of 15 mg pred) methylpred the next day

I think I'm starting to stabilise on this dose, but it's the extreme fatigue that suddenly hits me that I find most difficult to take.

[PMRpro Ambassador]

I don't see that as slow! To be at 10mg by now with a diagnosis in January is way ahead of the curve for most people.

Once you get to 20mg with GCA it is time to slow down to 2,5mg steps as you did down to 15mg but stay at each new dose for a month - you need that long to know it is still enough.

Why have you been switched to methyl prednisolone at this stage? Is the doctor blaming the pred for not being "enough" rather than it being an over-enthusiastic tapering approach? I personally had awful problems with methyl pred and needed more not less than I did of pred - no idea why but all it did was provide increased steroid side effects!

The fatigue is a component of the underlying autoimmune disorder which is not really impacted by the steroid. That is something you have to learn to manage - which is difficult with the SDOFD variety (sit down or fall down!) Have a read of the links in this post:

healthunlocked.com/pmrgcauk......

There are different sorts of fatigue associated with all autoimmune disease - and I think it is probably worse than the symptoms to deal with.

[DorsetLady PMRGCAuk volunteer]

I’ve answered your PM, but looking at your taper - the reduction every 2 weeks especially once you got below 20mg may have been the start of inflammation not being totally controlled daily.

The 4 weekly taper after 10mg is certainly more like it, but unfortunately things may have been sliding out of control beforehand, and 9mg is where everything went to rats. From then you’ve been trying to stabilise again, but it’s more difficult once you’ve flared.

We’ve discussed the alternating doses protocol on here recently, and although it’s recognised and suits some, personally I think it doesn’t do the patient any favours (personal opinion only) - because the body likes a steady dose, not up one day, down the next - unless you’re at the level when you maybe want to nudge the adrenals into action.

As for fatigue, partly illness, partly medication. You just have to manage as best you can - but have a look at this - healthunlocked.com/pmrgcauk......

Ps did you get email?

[Renaissance in reply to DorsetLady]

Thank you for your helpful advice and yes I did!