Reducing Pred after increase for suspect GCA.....communication problems.

[Ryeland]

Diagnosed PMR last April and titrated steadily down to 7mg Pred and happy with my progress. Then I experienced increased migraine type headaches with visual disturbance in December. GP put me on 40 mg Pred on telephone advice from local rheumy in January (GP not very experienced with either GCA or PMR). CRP and ESR were normal. Head ultrasound done last week, apparently OK. No other symptoms of GCA. I have reduced myself to 30mg over the last couple of weeks. Headaches much diminished. My question is: what would be a reasonable reduction plan going forward from 40 mg back to 7mg? The GP practise has today renewed my prescription, giving me 4 boxes of 1mg Pred tablets, which is less than 4 days on my current dose level and, 'No,' the receptionist says, 'this is not a mistake...... This is what the rheumy advised'. I feel I am being given the run around, which I shall have to try to cut through. I would really welcome advice on best practice steps for reducing Pred after a substantial increase for possible GCA, so that at least I have an idea what to aim for. Thank you as ever, and good wishes to everyone on this amazing forum.

[piglette]

I think they must have either misheard or misunderstood the rheumie. Dropping from 30mg to 7mg is definitely not a good idea. Is it possible to contact your rheumie to confirm that is what he recommended? Was it your GP who said the rheumie had recommended you to drop back to 7mg immediately?

[Grammy80]

You said your headaches were diminished....that means not gone, right? Don't rush your taper or you may find yourself with the visual disturbances you just experienced in December. Not everyone has raised markers. Don't let anyone push you to rush the taper and there is no personal prize for getting there is you wind up with vision issues.

[DorsetLady PMRGCAuk volunteer]

As stated you cannot drop back down that quickly, especially if you still have head issues.

You may be able to drop down fortnightly in 10mg steps, but 5mg would be better if you have no head pain, but you do need to speak the Rheumy department especially if your GP doesn’t seem very experienced with PMR/GCA

[Purpleazalia]

I think you need to ask what the rheumy advised in full. What are they expecting you to do? Were there any clues in the dosing instructions on your 5mg or newly issued 1mg boxes?

1mg doses are usually prescribed when reducing to levels where you need to mix and match with your 5mg tablets. It's highly unlikely the rheumy would be expecting you to be using 1mg tablets in your reductions yet.

I think you need to request an urgent appointment with your GP to explain your worries and ask about following the NICE guidelines to reduce when on long term steroids for PMR and GCA.

I'll add the NICE link when I've located it again - so you can have a read if you wish. There are links through to the GCA management.

cks.nice.org.uk/topics/poly...

Even if, because of your test results, they no longer think you have GCA, your reductions should be more gradual than dropping straight back to 7mg if you've been taking higher doses since January.

I was initially started on 40mg for PMR with instructors to drop by 5mg per week until I reached 10mg, then reduce by 1mg per month (this was the ideal for my PMR, but had to be adapted along the way once at 15mg).

[SnazzyD]

I would be wanting that receptionist to say whether they are reading from a note verbatim or interpreting notes or relaying a message. Did they go off and ask (likely stick their head round the busy GP’s door) or did they have the answer with them? I also think it is unreasonable to give you a bunch of tablets with no plan so you can go an do your own maths. If it is that specific the Rheumy should have suggested a plan. I’d like to ask the GP that given how long you have been on Pred on high doses for about 2 months would they themselves be prepared to endure the likely withdrawal from the plan as it seems? Also, what should you look for if the GCA is in the other cranial arteries and not the ones scanned? We all know what but sometimes you need to help those cogs turn before they deem it case closed.

[PMRpro Ambassador]

Rubbish - you can't just stop 40mg pred since January that fast. Having been on that dose of pred since Jan could have affected the result of the u/s,

If you can't get past the receptionist - phone the rheumy's secretary if you know who they are. Or try PALS at the hospital. This is the advice I was given by Prof Mackie on another matter.

If they are sure it isn't GCA (or assuming that), you can reduce rapidly to 10mg but you are going to feel just dropping from 30 to 10mg overnight. Having got to 10mg, the other few mg should be easy enough - BUT you need 5mg tablets for that, what has 1mg tablets got to do with anything?

[TooSore]

I think in addition to the prednisone questions there's also a question of what caused the increase in the migraines. I had one with a visual field that didn't go away. After a few days I could only see a blurry spot if one eye was closed. I was given a high dose of prednisone and they took a piece of the temporal artery to check but both the retinal specialist and the rheumy sent me straight to a cardiologist, which was actually the source of the problem. Are they still investigating to find out what's going on?