last day pred...not glad nor sad..............

[karools16]

It's Tuesday 11 July 12.43 am. I should be asleep. Today is my last 1mg Pred. From Wed it's HC only. At first, I decided to call these awful new tablets...HORRIBLE CURSE. IF I am to be on them long-term, that's not really what I want hanging over me. I have changed it to..H for the Consultant and C for me. I would be lying if I said I wasn't anxious. It was not my idea to jump from 2 mg Pred to zero, in 2 weeks. I had, successfully, tapered from 3mg to 2mg with PMRpros wonderful DSNS method.

The worst side-effects from HC are the tummy aches, and, no, I don't want any more pills. I am also extremely irritable and irritated, for the most part, with myself. When I asked my GP what would happen in the event of headaches returning, he was flippant, over the phone, and said'just come to the surgery' Whatever for? He knows zilch about GCA. He also mumbled about me being on Pred for far too long, and should've been off them a long time ago...boring..change the record.

So, a new chapter begins Wed. I refuse to put the 20 year label, as length of time to be on HC, per the GP, on myself. I will set no target. Am waiting for Endocrine appt, and making list of questions for the Consultant who has never seen/spoken to me.

How do I know if and when gca has left? IF headaches should return, is it back to Pred? You'd think after 12 years, I could answer my own questions, but I feel as if my 'comfort blanket' has been taken from me. My Neuro handed me over to my GP, when I was on 3mg.The Endo is concerned with the adrenals, and nobody for GCA, any more. It's now after 1.00 am, so I'll sleep on it.

[podo]

Hope all goes well for you off the Pred, after 14 years of it and several relapses I would be cautious about any sudden change, even on such a low dose.

It's about time we had some holistic thinking in the medical profession but maybe that's too much for single brains to handle!

[Polylinc]

karools16

I cannot believe that you only have one reply ... So here's another ...

I feel so sad that after you've carefully done dsns for a quite a while, that you have now been advised to cut the Pred off altogether !

A 10% drop in all that is ever advised and if you were at 1mg, you could have stayed at that indefinitely, with little or no adverse effects.

I guess you still have some Pred left and a pilll cutter so ...

You could "do your own thing" with the Pred for as long as you wish.

karools16 take care, relax and best wishes with your remaining journey x

[PMRpro Ambassador in reply to Polylinc]

You have to remember this is a different thing - a synacthen test showed karools adrenal function is poor. Hydrocortisone is the usual management. And it will do the same as the pred - they are both steroids.

[karools16 in reply to Polylinc]

Polylinc, Thanks for your reply.I am unable to do my own thing as this Endocrinology Consultant, stipulated, in writing , how and when I should be off Pred. Yes, I have 1mg, 5mg Pred and a pill-cutter, but think I must wait for the appt.

[PMRpro Ambassador]

I think you would know - and the hydrocortisone is replacing the pred. Think of it as a comfort duvet instead of a blanket. And your body will probably get used to it in time - just be patient a bit longer. xxx

[karools16 in reply to PMRpro]

Thank you PMRpro. I had no sleep at all last night. I wasn't worrying...just could not get off. Took 1 co-codamol, which usually helps and it didn't. I am a real grizzly bear today. When my electricity supplier rang, I bit her head off. I cannot go without sleep. Am going to try and have a nap now.

Yes, you are right. I have to give it time and patience!!

If I thought GCA was difficult to explain, adrenal insufficiency is even worse. I don't think some folk know where/what they are, by the expression on their faces. I also think folk think I could be hypochondriac, as, seemingly, never really well, except prior to synacthen test.Rant over. Sleep.I will still be 'tuning in, daily, to read how you are all doing.

[Rose54]

Fingers crossed for you

[karools16 in reply to Rose54]

Thank you Rose54.

[Rocketronzy]

All the best I too have not a lot of faith .in gps.

[ValFF53 in reply to Rocketronzy]

Or Rheumatologists 😟

[karools16 in reply to ValFF53]

Can't comment on rheumatologists, but I had a wonderful Neuro for 12 years, who knew about GCA.

[PMRpro Ambassador in reply to karools16]

I don't really care what their label is - it's the knowledge that counts! My GP is good - and when we are out of our depth we ask the local Head of Medicine whose hobby is GCA/PMR. When I see him we talk PMR and he prints off papers from the hospital medical library

[karools16 in reply to Rocketronzy]

Thank you ronzy. Hard to have faith in a dr when they don't listen to the patient. Perhaps it's because we patients often know more than them and they don't like our input.

[Rocketronzy]

All the best my friend. And as you say there is only one person that feels YOUR pain no one knows YOUR side effects. As

You do because it's your body.

I bet more people fall out with there doctor over prednisone than owt. 😱

Strange things drugs. To me over the last 5 years or so I love prednisone 😱😜

It done good for me makes me feel fitter etc.

Sorry I'm bragging

All the best.