Guest guest Posted February 21, 2000 Report Share Posted February 21, 2000 Obviously I have no sense of direction or distance.........Mike wants to go to England to visit but I'm not a good flyer....so, he'll be going stag I guess....Hope all is well with you, Patti > >Reply-To: egroups >To: egroups >Subject: Re: Actigall/remission >Date: Mon, 21 Feb 2000 08:44:24 +0000 > >Patti, > >sorry, but no. Brighton is a long way from here (By English standards) >and I don't know much about music these days anyway. I only listen to >the BBC radio 2 channel which plays undemanding music; just right for my >age group <g>. > >Steve. >------------------------------------- > >p mc wrote: > > > > No 'pop'quizzes please.....I'll have to get my cheat sheet ready. > > Mike has relatives in England, Southern Brighton, their names are >and > > Judith Young, he plays in a band called Diamond in the Rough...ever >heard of > > them? > > Patti > > > > > > > >Reply-To: egroups > > >To: egroups > > >Subject: Re: Actigall/remission > > >Date: Fri, 18 Feb 2000 13:33:20 +0000 > > > > > >Patti, > > > > > >as with all the drugs 'they' put into us, I couldn't pin down what any > > >of them do to help me. The Ursofalk keeps my LFT's in check. Until > > >recently I was taking Prednisalone (6 mg/day) and had been for 5 years. > > >These kept me from getting severe joint pains and stomach problems >(most > > >of the time). They also caused me to develop osteoporosis. Because of > > >this 'they' put me on to Azathioprine (100 mg/day) and cut down the > > >Prednisalone to 2 mg/day. This upset some LFT's so I still take the > > >Prednisalone until the LFT's settle down, then I can stop taking it. > > > > > >I hope your taking notes: I'll be asking questions later <g>. > > > > > >Steve. > > >-------------------------------- > > > > > >p mc wrote: > > > > > > > > Steve, > > > > Has the immunosuppresant put your PSC in remission or helped with >the > > > > overall progression of the disease? That doesn't seem to be a >standard > > > > treatment here in Canada! Mike is also taking digestive enzymes and >a > > > > product called hepatogen, it contains artichoke which is very >soothing > > >for > > > > the digestive system and excellent for the liver, so perhaps it's >not > > >just > > > > the Zantac but a combination. > > > > Who knows what works for one and not another. > > > > Patti > > > > > > > > > > > > > >Reply-To: egroups > > > > >To: egroups > > > > >Subject: Re: Actigall/remission > > > > >Date: Fri, 18 Feb 2000 09:26:19 +0000 > > > > > > > > > >Patti, > > > > > > > > > >now there's an odd thing! I too had problems with acid and the doc' >put > > > > >me on Zantac but it didn't do much good. Then I started on immuno > > > > >suppressants and the acid problem went away. > > > > > > > > > >Steve. > > > > >---------------- > > > > > > > > > >p mc wrote: > > > > > > > > > > > > Mike takes 5x250 mg. urso per day and we are hoping to work that >up > > >even > > > > > > higher. I recently read that they (whoever they are) think that > > >doses > > > > >could > > > > > > go up as high as 30 mg. per kg of body weight, in an effort to >halt > > >the > > > > > > progression of PSC. I think I read that on the British Liver >Trust > > >web > > > > > > site. It is a good site and if you go there, read the notes >from > > >the > > > > >Oxford > > > > > > Lecture. It is good reading and doesn't paint the disease as >being > > >as > > > > > > totally grim as I find Canadian and American web sites do. >Don't > > >get > > > > >me > > > > > > wrong, I don't have my head in the sand but I choose to put my > > >energies > > > > >into > > > > > > the positive things that can happen instead of the doom and >gloom, > > > > >because I > > > > > > don't believe it has to be that way for everybody. Autoimmune > > >disorders > > > > >can > > > > > > be put in remission, that is my goal and prayer for Mike. > > > > > > So far we've been lucky with Mike tolerating the dose, and >Zantac > > >has > > > > >really > > > > > > helped the acid thing, he started taking hepatogen and is eating > > >like a > > > > >pig, > > > > > > I love to see him eat well, he's starting to look more like his >old > > > > >self. > > > > > > > > > > > > Patti > > > > > > > > > > > > > > > > > > > >Reply-To: egroups > > > > > > >To: egroups > > > > > > >Subject: Re: Actigall/remission > > > > > > >Date: Thu, 17 Feb 2000 08:49:08 -0800 > > > > > > > > > > > > > >Phil is taking 4x300 mg a day of actigall. He has not had an > > >infection > > > > > > >since the end of March 1999. Do you think the high dose can be > > >what is > > > > > > >keeping him well? He does get fatigued and has pain in his > > >shoulders > > > > >and > > > > > > >neck but his liver functions have basically been hold at close >to > > > > >normal. > > > > > > >It's hard not to wait for the other shoe to drop though. He >weighs > > > > >about > > > > > > >150 > > > > > > >lbs. Don't know how to convert body weight. The psychiatrist > > >wanted > > > > >to > > > > > > >put > > > > > > >Phil in a study using MRI but he can't have an MRI since he has >the > > > > >metal > > > > > > >flecks in his eyes. > > > > > > >Peg > > > > > > > > > > > > > > Romlein wrote: > > > > > > > > > > > > > > > Many members of the > > > > > > > > list are taking it in a range of dosages > > > > > > > > High doses (20mg/kg) are under study, but preliminary >results > > >seem > > > > >to > > > > > > >show > > > > > > > > some halting of PSC. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >------------------------------------------------------------------------ > > > > > > >bargainclothing.com > > > > > > >20-70% off retail prices > > > > > > >Junior, missy and plus sizes > > > > > > >http://click./1/1461/4/_/24674/_/950807008/ > > > > > > > > > > > > > >-- Create a poll/survey for your group! > > > > > > >-- /vote?listname= & m=1 > > > > > > > > > > > > > > > > > > > > > > > > > > ______________________________________________________ > > > > > > > > > > > > > > > >------------------------------------------------------------------------ > > > > > > If you took Podimin™, Redux®, or the combination " Fen-Phen, " > > > > > > visit the OFFICIAL site. 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