Skibo - update

As I promised DorsetLady, this is an update on my post yesterday. I saw one of the GPs in my local practice and we agreed on a plan. Up the dose to 20mg (from 15mg) for a week then take 15mg and 20mg on alternate days. Listen to body and go back for a review in due course. None of these rigid plans...

She's a thoroughly enlightened doc - the plan was agreed as a result of a fairly long discussion of GCA/PMR and current knowledge and research. She didn't mind me bringing up ideas from this forum; used a model of a shoulder joint to explain its intricacies; showed me a book (about back problems) that covered stuff like dealing with relapses and preparing for returning to work). A GP with a library in her surgery has got to be a good thing.

With luck I'll be back to work on Friday (immediate boss told me not to try to work for a couple of days).

Thanks again for all your support

Skibo

14 Replies

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  • Hi Skibo,

    Thanks for letting us know how you got on.

    Your GP does seem to be taking more interest, and that can only be good.

    Not sure how the 20mg one day, 15mg the next will suit you, it's quite a big difference day to day, but guess you can only try and see. I assume when you go back and if everything's okay, she'll drop you to 15mg p/day.

    Will be interested to hear how things go. Good luck.

  • Thanks DL. It's definitely a big difference but it'll be interesting to see if it does con the body into accepting 15mg. And it's easy to get an appointment at short notice (as I did today).

    Skibo

  • My rheumie had me on alternative 20mg one day and 15mg the next. Mainly because he only had given me 5mg pred tablets. It did seem to work OK.

  • That's good to hear piglette. Fingers crossed...

  • Just don't let her make you do an alternating 15/10!

  • Even my rheumie did not suggest that!

  • What was the next move? I started at 15 and never tapered by more than 1 mg at a time, although it was weekly at first.

  • I certainly will not. 1mg at a time does look like a good idea.

  • That's good to know. Best wishes Jane

  • Well - that sounds more than a 10min appointment, Skibo?! Well done for that and for getting an enlightened doc, as others have said. Upon getting my initial diagnosis in March 2015 (not from my GP, I have to say) - I was started on 15mg Pred but had to increase to 20mg and taper monthly from there. Am now down to 6mg but have shoulder-pain - wouldn't say I've hit a brick wall at this point but I certainly feel I've brushed up against it! So, if your GP is amenable, I wouldn't try more than 10% monthly drops, if I were you.

    Best Wishes for the future!

  • Thanks Rokerman. She does like to talk. If I'm OK with 15mg in x weeks I'll see what she says about 1mg drops, maybe for shorter periods (eg 2 weeks). I'm not seeing my rheumie again for several months so I'll go with the flow.

    Good luck with getting below 6mg.

    Skibo

  • Hi Rokerman,

    Sorry to hear you're stuttering a bit a 6mg, I found it a bit sticky as well. Would suggest you perhaps stay there a bit longer than normal, maybe you're just on the borderline of the amount of Pred you need. A bit longer may resolve things, but you know what to do if it gets any worse!

    Around the time of adrenals glands waking up, so sometimes a slower taper is what is needed - 0.5mg maybe if you're not already. Don't rush it now you're getting within sight of better things!

  • Hi DL - nice to hear from you! I'm getting on ok but there's just enough shoulder pain on waking up to let me know what's still lurking! There's also knuckle-joint pain (when, say, trying to clench a fist) but curiously, this varies quite a lot from day-to-day?

    However, with all the shared experience on this forum - especially those such as yourself- I wouldn't find myself back in the dark days of diagnosis if I did find myself having a flare! (But I am still extremely keen to avoid that situation - so I'm not going to rush to taper dosage)

    Best Wishes

  • Good, glad to hear it.

    It's a pity we don't have all this knowledge at the beginning of our journeys, things would be so much easier. But I guess that's like life - as the saying goes 'youth is wasted on the young!'

    Take care.

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