Re: Sulfasalazine - 7-day wonder?

[Guest guest]

I think we should be very cautious with this sulfasalazine story coming out of The Freeman Hospital, Newcastle, England. It's too good to be true. Some people on the PBC on-line forum are jumping with joy and thinking that now they'll never need a tx. Sulfasalazine (combination of sulfonamide + a salicylate), was an early med for IBD which is quite effective but some people can't tolerate the sulfa part of it. It can also be hepatotoxic for a few patients. Generally superceded by mesalazine (Asacol, Pentasa) which has fewer side-effects. I'm sure quite a few of us are on this. The story has been reported in a bizarre way all around the world, as a cure for alcoholic liver disease and alcoholics will be able to continue to drink! (Is this research effort funded by the liquor industry!?) You should know that a lot of so-called health- correspondents know nothing about science and - as we say in Britain - don't know their arse from their elbows. They're looking for dramatic headlines which are forgotten a week later. Yet they do quote some of the research team and if these

quotes are correct I think the team were either drunk at the time or trying to drum up badly needed research funds. I hope I'm wrong but I doubt it. Because notice that these are experiments on animals and trials on humans are only to begin next year. So how can they be sure that the damage done by cirrhosis can be reversed? I'm sorry to see the name of Prof. included in this - a highly respected PBC researcher.

Ivor

[Guest guest]

>>> I think we should be very cautious with this

sulfasalazine story

I agree, sulfasalazine can be both good and/or bad (I guess you

can say that about any drug) but ya know, it’s nice to see someone,

somewhere, at least open to thinking about other drugs. If it causes a little

excitement and gets folks moving towards thinking outside the box, I’m

all for it.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

[Guest guest]

Joe was diagnosed with Chron's in 1987 but his dianosis was changed to UC eventually. Joe was 14 at the time of his diagnosis and was very, very sick. He 45 pounds in about 6 weeks! He was also diagnosed with PSC at this time. The doctors at Texas Children's Hospital told us he would need a liver transplant eventually. Joe was put on large doses of Azulfidine, Prednisone, Reglan, Carafate and then 6-MP, and treated with long-term Vancomycin and Flagyll for an infection of C-dificile. By the time Joe was 18 there was absolutely no sign of PSC! Joe's UC was always difficult to control though, and he eventually needed to have his dysplastic colon removed and a J-pouch constructed in order to survive the ravages of UC. In 1999 we all thanked God Joe was finally well, and completely out of the woods after his successful J-pouch surgery! Again, no sign of PSC! Joe then had 7 wonderful years of good health, an active life, and incidentially on no medications! There was no sign of PSC until 03/06 when Joe suddenly turned yellow, and went into liver failure, multiple organ system failure and acute pancreatitis, which he survived against all odds! What a trooper is Joe, but what a hard life he has had!

The question now is, did the Azulfidine and the Vancomycin put the PSC into remission for all those years? Should Joe have continued the Azulfidine and the Vanc even after his J-pouch surgery? I guess this is moot, but I do wonder...

Chris

mother of Joe (32), UC 1987, J-pouch 1999, PSC, acute pancreatitis 03/06

[Guest guest]

Joe was diagnosed with Chron's in 1987 but his dianosis was changed to UC eventually. Joe was 14 at the time of his diagnosis and was very, very sick. He 45 pounds in about 6 weeks! He was also diagnosed with PSC at this time. The doctors at Texas Children's Hospital told us he would need a liver transplant eventually. Joe was put on large doses of Azulfidine, Prednisone, Reglan, Carafate and then 6-MP, and treated with long-term Vancomycin and Flagyll for an infection of C-dificile. By the time Joe was 18 there was absolutely no sign of PSC! Joe's UC was always difficult to control though, and he eventually needed to have his dysplastic colon removed and a J-pouch constructed in order to survive the ravages of UC. In 1999 we all thanked God Joe was finally well, and completely out of the woods after his successful J-pouch surgery! Again, no sign of PSC! Joe then had 7 wonderful years of good health, an active life, and incidentially on no medications! There was no sign of PSC until 03/06 when Joe suddenly turned yellow, and went into liver failure, multiple organ system failure and acute pancreatitis, which he survived against all odds! What a trooper is Joe, but what a hard life he has had!

The question now is, did the Azulfidine and the Vancomycin put the PSC into remission for all those years? Should Joe have continued the Azulfidine and the Vanc even after his J-pouch surgery? I guess this is moot, but I do wonder...

Chris

mother of Joe (32), UC 1987, J-pouch 1999, PSC, acute pancreatitis 03/06