2nd Flare ???

[zarzis]

Hi all you kind people

My last post was over 3 months ago, and progress slow but not so bad, however during the last 3 weeks I guess I had a second Flare, I have weaned down to 12.5mg Pred and then I started to get short winded, and Pain down right side on my face and scalp, feet started to swell again and not so comfortable now, My GP said the last Blood Test before Christmas was up to 41, and if it does not come down up to next Blood Test then he will send me to a Rheumatologist. Without consultimg my GP I have upped my pred to 15mg to see if I can feel a little better again, do you think thats wise, Hope you all had a lovely Christmas and wish you all a Happy New Year and gradual freedom from this awful illness/Side effects

Regards

Peter

[DorsetLady PMRGCAuk volunteer]

Hi Peter,

Probably very sensible, sometimes we have to make our own decisions. But I wouldn't go any higher without medical advice. Hopefully back up to 15mg will do the trick. Whether it does or not you need to tell doctor at next appt, I wouldn't have thought he'd have a problem with it, but some are a bit more precious than others!

If it does solve the problem then good, and would suggest when you start reducing again, you only do 1mg a time until you reach 10mg, unless that's what you're already doing. If so, then maybe a taper over a few weeks is called for rather than an 'overnight' drop.

Good luck

[zarzis in reply to DorsetLady]

Many thanks Dorset Lady, I am supposed to reduce 2.5mg each month, then when at 10mg, I reduce at 1mg per month, so lets hope, I am feeling better since I increased to 15mg again, so fingers crossed, Thanks again

Peter

[DorsetLady PMRGCAuk volunteer in reply to zarzis]

Hi again

Agree with PMRpro think 2.5mg is too much between 15mg to 10mg although it is recognised taper.

Even though you've only reduced by 1mg a time, and it's still caused a problem it might be worth trying a slow taper - whether it's the DSNS or one of your own.

As the saying goes- there's more than one way to skin a cat! Very I un PC I know but true.

[zarzis in reply to DorsetLady]

Still have not got a diagnosis confirmed since first went to GP last April, he treated me as if I had GCA ,had a Sample taken and was negative, but maybe its PMR and not GCA was on Pred 60mg to start with, reduced to 12.5mg then had a flare, then back up to 80mg and soon as I get back down to 12.5mg another flare, so I think at this time 15mg suits until I see my GP, he did say if no improvement in my Bloods he will refer me to a Rheumatologist, !

Thanks again dorset lady your help and advice along with PMRpro is priceless

Regards

Peter

[DorsetLady PMRGCAuk volunteer in reply to zarzis]

Peter,

Unfortunately a negative biopsy doesn't necessarily mean you don't have GCA. Can happen that the section of artery taken as a sample was not affected, so the procedure is a bit hit and miss! But as you've reduced down to15mg that might suggest it is PMR rather than GCA, do hope so! Don't really like the sound of the face pain though. Might be prudent to ask the GP to refer you to the Rheumy to make sure.

[zarzis in reply to DorsetLady]

Hi Dorset Lady

Many thanks for your answers, and have taken all you advice onboard, hope to enjoy benefits of yours and PMRpro's intersting answers, will keep you adviced, as I seem to get more advice from you 2 than the GP's

Regards

Peter

[DorsetLady PMRGCAuk volunteer in reply to zarzis]

Hi again,

Unfortunately most doctors do seem to out of their depth with PMR and/or GCA. Not really sure why, whether it doesn't follow the pattern of most illnesses or it's just not that common, but that's no excuse not to do a bit of research when a patient presents.

If you do have GCA then because of it's implications you should see a Rheumy, although I didn't- too much went on before diagnosis (GP on completely wrong track) - but a fairly simple, albeit long journey followed.

[PMRpro Ambassador in reply to zarzis]

Yes, reading it again: you are telling us you went from 60 to 12.5, back to 80 and back down to 12.5? All since April 2016?

I feel sorry for your body - it can't have any idea where it is and your GP is totally out of his depth doing that. If he had taken the sort of approach with a possible GCA patient that is described in the paper I have given you the link for below you might have been down to 15mg by now, for the first time! What he's done sounds more like snakes and ladders...

[zarzis in reply to PMRpro]

Yes PMRpro, thats correct 60mg down to 12.5mg then up to 80mg and down to 12.5mg, but I increased to 15mg on my own back, as I have to go to Holland tonight, and needed to feel better, and you are right the GP's are like headless chickens when it comes to GCA or PMR

Thanks

Peter

[PMRpro Ambassador in reply to zarzis]

Time for either a new GP - or even better, a good rheumy.

[PMRpro Ambassador]

I see the biggest problem as being the fact it will mask the possible flare by reducing the blood markers and the GP won't associate the two. When was the GP intending repeating the test? He should have suggested after a week.

Did you drop from 15 to 12.5 in one step? That would be asking for trouble - 1mg at a time is quite enough in PMR. Not that the average GP will accept that but most patients on the forum will back me up!

[zarzis in reply to PMRpro]

Hi PMRpro

I have my Blood Test end of next week, but I will tell my GP that I increased to 15Mg, and yes I was dropping 2.5Mg per month prior to this flare, so now back on 15Mg and feeling better already since this mornings meds.

Thanks for your advice

Best wishes

Peter

[PMRpro Ambassador in reply to zarzis]

Yes - if you were only on 15mg for a month I think that was maybe pushing it.

There is a paper where top experts suggest 6 weeks before trying another reduction and then another 6 weeks at 12.5mg. - and that is after starting at 60mg for GCA and taking 6 months to get to 20mg. You have been shooting up and down the doses- and probably without need. If the suspicion was GCA then you should have been referred to a rheumatologist as an emergency - GPs are usually out of their depth with complex patients,

rcpe.ac.uk/sites/default/fi...

But from here - since you have flared twice at 12.5mg - try this approach using 1mg reductions:

healthunlocked.com/pmrgcauk...