Pred 12 years...Hydrocortisone 3 months...back to Pred.............

[karools16]

After 3 hellish months of Hydrocortisone, for Addison;s Disease, I have asked my Endocrinlogist to put me back on Pred, as I can no longer feel 'manic'. This is not brain fog. This is not knowing what you're doing anymore. Last week, I 'forgot' to order HC and a weekend coming up. Fortunately, after a few calls, it was delivered late afternoon. A few days later I 'forgot' to take the lunchtime dose, with the dosette in front of me. I remembered at 3.15pm, and took the dose. Minutes later, I remembered that I should'nt have taken it, but waited for the evening dose at 5pm. Rang dr to check it out;she didn't know, but did make enquiries, and said to take dose at 5pm. The next day, en route to town, I remembered that the heating was still on.This is NOT NORMAL for me.The Endo will write to my GP, whom I am seeing on Thursday, and tell him to put me on 4mg Pred.That is equal to 20mg HC. The result of the diabetes blood test, was that no diabetes, at present, but borderline.

Apart from all this, I appear to have PMR symptoms? Both shoulders ache, neck, and stiffness am. I am asking GP for a steroid inj in my left shoulder as I am at yelling point. I am not a happy bunny. When on 2mg Pred in May, and feeling really well, my Neuro thought the GCA had burnt out. Am not so sure, as a few hairline headaches have been creeping in.

[DorsetLady PMRGCAuk volunteer]

Hi karools16,

So sorry to hear that you think illness not in remission after all.

Do hope you get some relief soon, and life is not so crappy (sorry, but that's what it is!).

Take care.

[karools16 in reply to DorsetLady]

Thanks DorsetLady. Yep, that's the word for it....crap!

[PMRpro Ambassador]

How sensible! Wonder if they had left you on pred in the first place if this wouldn't have happened. At least you aren't going to have to fight the "get off pred" battle!

[karools16 in reply to PMRpro]

I asked to be left as is, but overruled by Endo. Years ago, when I was on 5mg Pred, I asked my Neuro to leave me on that forever. He said he would prefer me to be off them altogether. I am sorry that, at 3mg Pred, he handed me over to my GP, who has no knowledge of GCA. Once, he said, almost under his breath,'you should've been off them long ago'. I put my hand up and told him not even to go there.I will be seing him Thurs and hear what he thought of the spoons and the gorilla!

[SheffieldJane]

So sorry this has happened to you karools. Pred is the way forward then. I was told by a doctor that Cortisone has few or no side effects and would sort out Addisons no problem. I imagined it being like the Thyroxine I take for my thyroid. Another thing to dread.

Sorry particularly, that your remission was not in fact happening. I bet you wish they'd left you alone!

[karools16 in reply to SheffieldJane]

Many doctors tell patients to 'ignore' the leaflets with medication, as you think, when reading, you have those symptoms. However, with the HC, some symptoms are immediate and others, later, as the leaflet states.I can only hope it gets better, from now on.