Prednisone

[jola57]

Good that you are on an upswing. here I am 4:00 in morning blogging and web surfing. I can't cuddle to my hubby of 25 years and sleep alone, all because of the pred yet being without it is unthinkable. I too hate my look, especially when I was on my cruise vacation and had to wear my fat clothes, but life goes on.

[coffeelover]

Jolanta,

I too sleep alone. We have a waterbeds which I just love, but since my trach surgery I get bouts of heatburn and GERD and prefer to sleep upright. I think we need to go bed shopping......

[jola57]

Heartburn - my almost constant companion - what is he doing in your bed??

[Jack]

I too sleep alone. I cough all night so I'm not a very pleasant person to share a bed with.

[Sangye]

I have a suggestion for heartburn that even gets rid of my cellcept heartburn. Twice a day, drink 2 oz of Aloe vera gel mixed in water or juice. Make sure you use the gel, and whisk it to dissolve (there will still be some blobs). It's bitter, so you can add a little juice to hide it, or just get used to it. You won't believe how well it works, and it also heals your entire GI tract. Make sure you refrigerate the open bottle of gel.

I'm sure you know heartburn can cause or worsen a cough. Maybe if it decreases it a little, you can sleep better!

[Jack]

Thanks for the sugestion Sangye, but I take Lansoprazole for acid problems and it works very well. I certainly know about it if I run short!
My cough is caused by Bronchiectasis which I am told is not connected with Wegener's, but I think they are wrong!

[Sangye]

Yes-- it occurred to me that anyone on higher doses of pred, really needs a pharmaceutical acid blocker. Pred can cause gastric bleeding, and there's no natural way to prevent it if you're on higher doses. I forgot!

I agree with you about the bronchiectasis being linked to the Wegs somehow-- maybe part of the disease, part of the lung's reaction to the disease, or a drug side effect. I think MDs sometimes get caught up in the "We can't prove an exact link" thing and they just shut down all evidence to the contrary.

[coffeelover]

I understand your frustration. I still ahve a trach in for another 3 months or maybe more and I can handle that better than the Prednisone. I am also on 20 mg and still suffer from the weight gain as well.
Someone on this forum told me to try to accept the new normal and that includes the pred UNFORTUNATELY!

[crackers]

yes i'm afraid pred is a necessary evil.i've been on it for 2 years now and every time the rheumy tries to wean me off i have a flare up.can't live with it can't live without it...........or is that womenjohn

[Luce]

So annoyed right now! I've been tapering the pred since I was diagnosed 5 months ago and had got down to 10mg, which Ive been taking for the last month. My face had almost returned to normal and I was so pleased everything was heading towards remission really quickly.
However, I had my usual weekly blood test yesterday and my consultant rang to tell me that my ANCA had shot up from 23 to 170. So I have to up the pred to 30mg and may have to switch back to cyclophosphamide as the azathioprine isn't working.

I could think of quite a few swear words right now....