You guys got me into trouble . . Ha ha - PMRGCAuk

PMRGCAuk

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You guys got me into trouble . . Ha ha

Lisa630 profile image
13 Replies

Got told off by GP today for reducing my Pred . . Not as Rheumy said to.

She said to take 40mg for 2 wks, 30mg for 2 wks, and 20mg for 2 wks. .

However I followed your advice and to introduce the new dose gradually so I did

40mg then 35 then 30 then 25 then 20

She was totally incapable of seeing the advantage and just said so you didn't do as Rheumy told you. . I can see if I had done it the other way round to fast then I can understand her concern, they are totally in apple of thinking outside the box, she was not one bit interested in PMRGCAUK

Next time I will be telling her exactly what she wants to hear. .

I'm so bloody mad. . Grrr

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Lisa630 profile image
Lisa630
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13 Replies
suzieh profile image
suzieh

Slowly works best. You only have to read the dialogues on here to prove that! You are right- next time tell her what she wants to hear! Probably won't help her next patient with PMR though........

daveD profile image
daveD

LO Lisa. just log on doing my mosey around the 3 forums.& yours was the first post i came to, wright or wrong i have done my journey down by info of these forums. I use Drs for meds& bloods,it has seen me down from 15 to 5mgs with no major set backs. I think we have to humor the so called experts. purely my take on things.your problems are different to mine i think. I am sure you will get better advice from some of the Girls.Good luck with your journey.Dave

PMRpro profile image
PMRproAmbassador

WHY would you complain about slowing the reduction marginally? 5mg every week is the same as 10mg every 2 weeks - but far less upsetting for the body. Whatever...

Lisa630 profile image
Lisa630 in reply to PMRpro

What ever exactly, I'm so mad. . . I've no got a funny right eye again and slight headache again. All because I had just cut down to 25mg and was told that it's now 20mg not 25mg. . .

rockyandzeus profile image
rockyandzeus in reply to Lisa630

Hi there,

Were you on high dose pred because of GCA?

And are you saying your eye is bothering you again?

Perhaps you should hold at the last dose where your eye wasn't bothering you.

Your GP won't be your seeing eye dog if you lose the sight in that eye. You and the rest of us, we are responsible for our own health. Maybe try a different GP... If you can find one!

Best wishes

Dorothy

rockyandzeus profile image
rockyandzeus in reply to Lisa630

Hi there,

Were you on high dose pred because of GCA?

And are you saying your eye is bothering you again?

Perhaps you should hold at the last dose where your eye wasn't bothering you.

Your GP won't be your seeing eye dog if you lose the sight in that eye. You and the rest of us, we are responsible for our own health. Maybe try a different GP... If you can find one!

Best wishes

Dorothy

Lisa630 profile image
Lisa630 in reply to rockyandzeus

Morning Dorothy

I've gone from 40mg to 20mg in 5 wks on Rheumys advice in a letter to GP . .

Eye feels a bit better this morning I will take things easy today and see if I need to up it slightly or not.

Good news is I can stay at this dose now as no further plans are in place via Rheumy to GP, plus Christmas coming up so I think I will be forgotten for a while.

I sa a different GP yesterday thinking she might be a bit more proactive, I'm going to stick with the other one, who is pretty uninterested but at least I might. . Might... Be able to sway her to my thinking . . I would love her to be just interested. . . In GCA x

Lisa x

Lisa630 profile image
Lisa630 in reply to rockyandzeus

Morning Dorothy

I've gone from 40mg to 20mg in 5 wks on Rheumys advice in a letter to GP . .

Eye feels a bit better this morning I will take things easy today and see if I need to up it slightly or not.

Good news is I can stay at this dose now as no further plans are in place via Rheumy to GP, plus Christmas coming up so I think I will be forgotten for a while.

I sa a different GP yesterday thinking she might be a bit more proactive, I'm going to stick with the other one, who is pretty uninterested but at least I might. . Might... Be able to sway her to my thinking . . I would love her to be just interested. . . In GCA x

Lisa x

olive2709 profile image
olive2709

Bad girl as long as she gives you the scripts for pred just smile sweetly and do what you know is right

Lisa630 profile image
Lisa630

Oh and I also asked for some 1mg Pred, as felt that once I got to 20mg I would take it very slowly and maybe do 18mg and so on. .

Was told . No we don't do 1mg Pred until maybe you get down to under 10mg. .

So I might be buying a tablet splitter I think don't you. .

Asbeck profile image
Asbeck in reply to Lisa630

Wow. There is a 10 mg and a 5 mg pill as well. Sometimes my pharmacy gives me lots of ones, when it doesn't have 5s. This is a blessing. I actually cut the ones in halves and quarters, when I try PMRpro's method. But I am prescribed 5s AND 1s. Lucky me. When I was first coming down from the GCA dose and was at 20 mg, my doctor recommended a 1 mg reduction each week (just as you intuited.) But this was to see at what dose I flared. (I didn't understand this at the time.) I flared at 17 mg. (eye); was put back up to 30 for 9 days by neuro-ophthalmologist; and then he tried a rapid reduction down to 5. We worked together with me in the driver's seat and settled on 9 as a maintenance dose. Beg for the 5s and 1s. Splitting 20 mg does not sound very accurate. If you do it make sure that you take the pieces of each split pill over a period of days. (Don't split a lot of pills at once.) Then the dose will even out over a few days. Also Prednisone is cheap. Maybe you can get it from Canada without a prescription.

mfmb profile image
mfmb in reply to Lisa630

i had a reaction between 25mg and 20mg so we decided that it would be safer to come down 1 mg a month . this has worked well and i stagger the change over .i am down from 40mg to 12mg.GP says that once i get to 10mg we may have to monitor more carefully. so 1mg tabs have been available since i started coming down from 20mg . (GCA)

Yes, I think you will need one. I had to fight for months to get the 1mg Pred and succeeded when reaching chopped up messes of about 11.25mg! I also don't admit my true reductions as 'the experts' have to argue as they know best! Good luck with yours.

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