Passing the buck….New Rheumy!😱

[Angelsmummy]

Well what do you know,new Rheumy who put me up to 15 mg because of flare has sent me a copy of letter to my dr,asking him for HIS opinion in dosage going forward as the lowest I have managed to get to is 4 and 1/2 mgAlso said Adrenal insufficiency at 4 and 1/2 mg ( which I now know from the forum is totally expected at this dose!So upshot is that I know my doc will let me stay on 5 mg for life( if needed but hopefully not) but because I went from 10 mg from 4 and 1/2 mg on the 6 th Jan,then 15 mg from the 14 th and still on it,,signs of flare have gone,I now want to taper again SLOWLY.But because the 2 weeks have passed how should I now decrease safely?Losing faith I tell you!Thank god for proper info on here eh?xx😱😜

[SnazzyD]

If it were me, 0.5mg per 6 weeks for starters. This is because of the flare and your debated adrenal function. Then depending on how you feel, I’d go slower from 5mg or before that if your amber light starts to flash. Your body needs some stability.

[Angelsmummy in reply to SnazzyD]

Thanks SO much S,seems like a great plan,would not really trust my docs to dictate doses,four of them up my surgery couldn’t even diagnose that I HAD GCA.!Will start my nice slow taper tomorrow.Many,many thanks to you and for your knowledge!xxx💐💐💐💐😜

[SnazzyD in reply to Angelsmummy]

Stand by for more opinions though ! Whatever, you’re doing, do tell your GP as after all they are the prescriber and are accountable.

[Angelsmummy in reply to SnazzyD]

Absolutely S,but think my doctor ( who doesn’t seem to know much about our diseases) will be more than happy if I have a sensible plan!He knows I only take pills if I have to .Will see if anybody comes up with anything different but pretty sure you are well respected on here ,even if there are a couple of tweaks to what you advise.Will contact dr tomorrow with whatever plan I have.Thankyou!xx💐💐💐😜

[PMRpro Ambassador]

The 6th to today is 13 days - barely 2 weeks.

If it were me I would drop to 10mg and see if that is still enough, Then 1mg over not less than 4 weeks and preferably 6 - and be very watchful. But of course, you may find 10mg isn't enough - in which case I think it would need to be 15 and Snazzy's slow taper from there.

[Angelsmummy in reply to PMRpro]

Oh dear!Feel SO well on 15 mg,I realise what you are saying, just wondering if I drop to 10 in a couple of days ,then feel dodgy,would have to go back up again to 15!Think I shall wait and see if DL logs in and see if there is a feeling of 2 to 1 in suggestions.Absolutely NO disrespect to you though PRO!Thankyou for answering.xxx💐💐💐💊💊💊

[PMRpro Ambassador in reply to Angelsmummy]

Not even thought about. If you - and more to the point your GP - are happy basing it all at starting from 15mg, go for it. You were too low - but most people would want to go back to a lower dose. And most GPs might baulk at a 10mg increase.

[Angelsmummy in reply to PMRpro]

Glad about that PRo.,Don’t want to bitethe hand that feeds me!As for the 15,Rheumy said up to 15,when doc phoned on Friday,he told me to stay on 15 until tingly scalp went( which it has!) but no input on lowering etc,which is why I have asked for advice.Of COURSE I want to go for a lower dose of ten,just a bit frightened of dangling my toes in the water!💧 😱😱😜

[PMRpro Ambassador in reply to Angelsmummy]

How fast you can retreat from 15mg rather depends on whether it was a return of the symptoms because you overshot by a bit at the end or whether if it is real flare. But you have to try to see which it was. But only you can know,

[Angelsmummy in reply to PMRpro]

OK PRO,.xx💐😜Many thanks

[DorsetLady PMRGCAuk volunteer]

As you have only been diagnosed and on Pred for 2 years, it be inclined to taper from 15mg as if it were your ‘new dose’. You may have got as low as you did previously, but I would say too low too quick… so maybe new year, new slate, new taper.

[Angelsmummy in reply to DorsetLady]

Sorry DL PRED BRAIN!!Please could you describe taper,head in a mess at present!DUH!Are we talking 1 mg every 6 weeks until I reach about 10 mg then start 1/2 mg every six?Thought I had it sussed but obviously not!Such a wally!( no comment please!) Thanks for replying!.Doing anything nice today?xxx💐💐😜

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

That sounds sensible ….nothing much on cards for today . Typical Monday -washing! -lovely sunny day -so maybe meander out somewhere later..

View of sunset on Saturday evening - in garden 😊

Sunset

[Angelsmummy in reply to DorsetLady]

Many thanks DL,very similar to Snazzys reply,and I also took in consideration your comment about only being 2 years in and being too low too quick.,Pretty sure doc will go along with this……Thankyou for taking your time out of your holiday to teach an ignoramus!Beautiful photo,love the grasses,a special favourite of mine!Enjoy your washing!💐💐💐😜