Guest guest Posted February 23, 2000 Report Share Posted February 23, 2000 Hi - i heard from Kenny who was telling me about his prednisone experiences and his foods he can eat are about as limited as mine - wow - there's someone else out there... I'm loving this list - I have some other e-mails I haven't had a chance to read through yet, but this group is so great!!! Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2000 Report Share Posted February 23, 2000 Hi - thanks for writing back... You have all those children with EE and you have EE - my heart goes out to all of you! I was kind of afraid I couldn't start out low and at every other day, but i figured i'd see if anyone else there had tried that and it worked... Thanks again for writing back - Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2000 Report Share Posted February 23, 2000 Hi Beth-- I am an adult with EE (and have five sons with it). We've done the prednisone thing and I'm doing it right now. There are people who get to every other day prednisone to avoid the side effects BUT, you have to start out higher and taper down to the every other day thing. It doesn't work for me yet, but I'm still trying... Welcome to the group. We learn more about the disease the more people we have in these groups. Steph. [eosinophilic gastroenteritis] Prednisone >From: Rosie0613@... > >Hi everyone...my name is Beth and I'm new to this list - thanks to Judy! I'm >an adult with EG and I know this list is more for parents of children with >that problem, but i';m hoping someone may have some ideas for me. >I was diagnosed almost two years ago, put on prednisone for three months - >which worked great while I was on it, but once I stopped taking it, I had >problems again. I've now been off it for more than a year, and can now only >eat potatoes and corn without feeling like my throat is closing up and then >getting sick. So, I planning to return to prednisone - other drugs haven't >worked for me...' >My question is this - to try and avoid some of the awful side effects of >prednisone, i want to start on a low dose, maybe every other day and see if I >can improve myself that way, rather than starting at a high dose and weaning >down...Has anyone ever tried to use prednisone this way, and if so, what were >the results? >Thanks for any help anyone can give me...it's so nice to have a group like >this of people to talk to...I was feeling very isolated... > >Beth > >------------------------------------------------------------------------ >Get what you deserve with NextCard Visa! ZERO! Rates as low as >0.0% Intro APR, online balance transfers, Rewards Points, no >hidden fees, and much more! Get NextCard today and get the credit >you deserve! Apply now! Get your NextCard Visa at: >http://click.egroups.com/1/966/4/_/_/_/951278027/ >------------------------------------------------------------------------ > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2000 Report Share Posted February 23, 2000 Beth, Here's a good overview of us: > >http://www.fredericksburg.com/news/stories/0206harl.htm Steph. - __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2000 Report Share Posted March 5, 2000 Hi Steph; How long do you think it takes for the prednisone to kick in. Sofar it has not changed anything in s bleeds. Its very weird. They are now talking about going in again with the scope and treating him locally. Also they want an adult GI and his surgeon in on it too. Somehow I have a feeling we are running out of option and this in not just an inflamation and EOS problem. Meanwhile he is looking good and as energetic as ever. I guess they have more stamina then the rest of us. Beatrix Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2000 Report Share Posted March 5, 2000 Bea- It only takes us a week or less before the pred kicks in big time. Are they considering steroid injections? We went through that fiasco with ME years ago. I do NOT advise it for eos disease. However, Kody had epi injections directly into the site of his GI bleed and it worked wonders (that was the nasty one, it actually saved his life). It was actually performed by the adult GIs cuz they do it more. Do they know WHERE he is bleeding from? Steph. Re: [eosinophilic gastroenteritis] prednisone > > >Hi Steph; >How long do you think it takes for the prednisone to kick in. Sofar it has >not changed anything in s bleeds. Its very weird. They are now >talking about going in again with the scope and treating him locally. Also >they want an adult GI and his surgeon in on it too. Somehow I have a >feeling we are running out of option and this in not just an inflamation >and EOS problem. >Meanwhile he is looking good and as energetic as ever. I guess they have >more stamina then the rest of us. >Beatrix > > > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates >as low as 0.0% Intro APR and no hidden fees. >Apply NOW! >http://click.egroups.com/1/975/4/_/474479/_/952284243/ >------------------------------------------------------------------------ > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2000 Report Share Posted March 5, 2000 Thanks Steph. No they don't know actually where it is coming from. He has an ulcer type thing at the jejunem and such. But it goes off and on without any rhyme or reason. For instant today he ate breakfast lunch and dinner. Yet he bled all day and tonight after stuffing his face no blood. I don't get it. Somedays he has only soup and then bang his ostomy output is dark red. The only thing that is consistent is the fact he smell so bad at all times. He even complains. There are airfresherners everywhere. Well as far as I know they want to go in and treat the area. Who the hell knows what it means and why they need an adult GI. I am going to see what happens the next few weeks. The bleeds are not bad enough with getting his HMG to drop and we are giving him the max on the Iron in the TPN. I just like an easy time for a change and its not coming at all. I won't even consider reducing his TPN for now as long as he does this. Well hubby is having a rough time with the kids and he is not to up the blood pressure or his corneal transplant will go on him. So better chase them all to bed. Thanks for the info and I will keep you posted. Beatrix Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 i RECENTLY CAME OFF SOLUMEDROL AND AM NOW ON PREDNASONE AND BOY HAVE I BECOME THE BIGGEST ASS HOLE, IS tONY, I become violent when I am on steroids. Many of us do. I've never hit anyone (other than my little sister who deserved it) but give me pred and I will and have taken swings. We get to a place where the pred no longer helps-- as you can tell- and the side effects are horrid. This is where your MD MUST LOOK AT THE ALTERNATIVES. aLL THE IMMUNOSUPRESSANTS AND dmards and BRMS can be used (it'll take a combination) to get you under control. ALso, you MUST WEAN OFF the pred- so your adrenals learn to make their own cortisol-- or you could find yourself in the hospital with severe adrenal insufficiency--and that can mean death. Hang in there- talk to the MD tomorrow tell him whats up-- and get started on Imuran or MTX--to wean off pred and replace it-- and to keep the immune systme and the sarc from doing more damage. Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
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