Guest guest Posted February 23, 1999 Report Share Posted February 23, 1999 Tina, I take 1800 mg of Actigall a day based on research that says 20mg/kg of body wt. may inhibit further sclerosing of hepatic and or bile ducts. I haven't had any symptoms of PSC or any adverse side effects from Actigall since starting this regimen. I've been taking Silymarin, turmeric, green tea extract and several other natural anti-inflammatory's as well, which I believe are positive contributors to my good health because of the possible nature of the disease. A friend of mine, who is a surgical oncologist, and I feel as though PSC may reside etiologically in the group of autoinflammatory disorders. Because inflammatory bowel disease is involved, the gene locus would have to be very close to the hepatic locus which would demonstrate the correlation. Now, if the researchers with their millions can just identify the locus and torpedo the response messenger replicator (rna or whatever) the condition would 'cool' down. Suppressant therapy is very general and nonspecific, but probably the best we've got right now. Norm At 07:15 PM 2/22/99 -0500, you wrote: >Hello group, > > I have noticed a problem with concentration lately. I was hoping it >was only a side effect of the high medication doses I've been on lately. >I'm tapering off Prednisone and I'm taking Actigall 900 mg, Asacol 2400mg, >Dicyclomine 40mg and birth control. This high amount of meds are due to >the recent flare up of UC. My fear is that the lack of concentration is >not from the meds, but from the PSC. I've heard others in the liver >support group mention "brain fog" and I was wondering if that's true with >PSC? I really have no symptoms of PSC that I'm aware of, so I'm still >leaning towards the side effects of the medication being the cause. I have >not noticed an increase in sense of smell. > >: From all of th advice i've heard on here about cholangitis, if I >were you I'd call the doctor or go to the hospital. Don't take any >chances! > >Penny: Thank you for the web site on lab test profiles. > >I have a question on the dosage of Actigall. I've heard through this group >that in other countries they are experimenting with high doses of Actigall. > What is considered a high dose? My doctor calculated my weight and gave >me what he thought was a little bit of a high dose for my weight. But I'm >not sure that it would be considered high in other countries. I've noticed >that other people in the group are on lower doses of Actigall, but I don't >know their body weight either. Like Phil - Peggy mentioned that he takes >300 mg twice daily and I bet he weighs more than I do. I'm 5'3 and weigh >110 pounds and take 300 mg three times a day. If it doesn't bother you, >could any of you that take Actigall tell us how much you take and how much >you weigh? I think it would be informative for us to get this information >to take back to our doctors. Thanks, and have a great day! > > Tina PSC/UC > > > > > > > > > > > > > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 My first symptoms was fatigue, and jaundiced eyes. I thought I was having a flair up of epsein-barre virus. Went to my family Dr. was sent for blood tests. Elevated liver enzymes. Was " officially " diagnosed with PSC Sept.98 Symptoms now are loss of appetite, nausea, fatigue, and URQ pain. Liver enzymes are almost all normal right now though. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Biddy, if you are in extreme pain, I would suggest a visit to the ER. Have you done what I suggested, and took your temp for a week to two weeks? It could be that there is an infection, or something that could be simply fixed. You really need to go back and see your GI even if you don't like him. Maybe it is time for you to be listed. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 My dear , Thank you so very much for the info you gave. I have printed it out -- you are the first one to reply and I do hope so much not the last. There HAS to be something -- anything -- that will link all of us together. I will never give up to I find an uniform diagnosis -- or at least some percentage of us had the same symptom in our lives. Maybe, just maybe, it will help the children and young men and give them other options with meds, etc. Again, thanks!!!! If you want to help with this with me, I would appreciate it. I have been so very sick lately that it has been days before I have checked my e-mail and if I don't get one of the replies -- I can ALWAYS depend on you!! , I really don't think I will live much longer because of the increased pain and the increased pain in the stomach. After going through the URQ and other pain in the abdomen for 3-1/2 years and the setback with my ulcers, I do not think ANY body can take this forever -- something has to give! See my docs didn't pay any attention to the intense pain in my stomach although I was diagnosed with multiple ulcers last year. When I mentioned the pain, my docs just shrugged it off and said I didn't have pain. And then came the hemorrhaging about 3 weeks ago and they just couldn't shrug it off anymore -- after all when all of this blood is coming from one's mouth, I guess they thought " well maybe she does have something wrong with her (pain). " These docs aren't quick on the uptake, but when it " hits them in the face " then they have to deal with it!! All of this time with this intense stomach pain and it didn't have to happen. Now they are not sure that the ulcers can ever be healed and I may be on Prevacid or Prilosec the rest of my life. I wish I had gone to the medical schools these " docs " went to -- then I could see patients, not treat them, get all of the money that docs make in this area and " slide " !! I guess you can tell I am somewhat " put out " with these so-called docs. Hugs, Biddy PS. I guess you can tell by my messages of late that I am really getting confused and just cannot put my thoughts down very good. Please excuse me. SYMPTOMS >My first symptoms was fatigue, and jaundiced eyes. I thought I was having a >flair up of epsein-barre virus. Went to my family Dr. was sent for blood >tests. Elevated liver enzymes. Was " officially " diagnosed with PSC Sept.98 >Symptoms now are loss of appetite, nausea, fatigue, and URQ pain. Liver >enzymes are almost all normal right now though. >Love, > > >------------------------------------------------------------------------ >MyPoints-Free Rewards When You're Online. >Start with up to 150 Points for joining! >http://clickhere./click/805 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Biddy, I am so sorry that you are feeling so bad. You were one of the first to talk with me and make me feel comfortable here on this site. And the fact that you and I seem to have a lot of the same symptoms make me feel for you. I wish that you would go to the doctor, maybe they can do something to make you more comfortable. I also know what it is like to have a doctor that seems to pooh pooh everything, (must be the same symptoms thing) but I am in the process ( as slow as it is) of finding another one that will be more compassionate and caring along with the medical side, I hope I can find one, it is not to late for you to find one to work with, although I know it is a very exausting job. I pray that you live a lot longer, and a good quality of life too! Love and Prayers Vicki Oh 38 dx PSC 6/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Hi , Oh I am sorry. I had completely forgotten about taking my temps. I was seen by my GI 3 weeks ago when I was in the ER bleeding from my mouth. The next day he went down into my stomach and found the source of all of the bleeding. He still thinks that I am not in pain -- all in my mind. Same story -- different day! Hugs, Biddy Re: SYMPTOMS >Biddy, > if you are in extreme pain, I would suggest a visit to the ER. Have you >done what I suggested, and took your temp for a week to two weeks? It could >be that there is an infection, or something that could be simply fixed. You >really need to go back and see your GI even if you don't like him. Maybe it >is time for you to be listed. >Love, > > >------------------------------------------------------------------------ >MyPoints-Free Rewards When You're Online. >Start with up to 150 Points for joining! >http://clickhere./click/805 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 , I try to control my pain with the Percoset. I have only been to the ER 4 times in 3-1/2 years -- when I couldn't get it under control myself. Hugs, Biddy Re: SYMPTOMS >Biddy, > if you are in extreme pain, I would suggest a visit to the ER. Have you >done what I suggested, and took your temp for a week to two weeks? It could >be that there is an infection, or something that could be simply fixed. You >really need to go back and see your GI even if you don't like him. Maybe it >is time for you to be listed. >Love, > > >------------------------------------------------------------------------ >MyPoints-Free Rewards When You're Online. >Start with up to 150 Points for joining! >http://clickhere./click/805 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Vicki, Thank you for your kind words and support. There just isn't a doc around here that is better than the one I have. Actually the guy is brilliant, he just chooses not to believe me. I think the last episode of hemorrhaging is making him a believer. I just don't know which is worse -- the horrible pain or the sickness, pain and nausea associated with the bleeding ulcers. I feel so very bad that it is all I can do to walk into my own yard and try to play with my angel dog. Today I tried again and got so shaky that my legs were like Jell-O and I was so very sick. The only reason I am here right now is that my devoted hubby brought my Percoset to me -- that helps but just masks the pain and sickness. I just do not want to live like this -- it is ridiculous. I am so irritable and tired that it is very hard for me to see a reason not to give up. I have pushed myself to the brink through all of the pain for 3-1/2 years and things are starting to get worse -- didn't realize that could happen. I am trying to get my mind off of me and posting -- I am trying not to go to the ER. Well now that I bored you to death, I am going to try and do my society column. Haven't done it in quite a while and people keep calling or when they see me they want me to continue. I loved my life and now I can see that if something positive doesn't happen very soon, I will be bedridden. I was so very active, always felt many years younger than I actually was, had a zest for life like few have, and I just don't want to go on like this. They won't put me on the list because " I am not sick enough! " I have to be near death at least one time hospitalized -- preferably twice -- before Duke will even list me. Then it will be 4 to 5 years before I can get a liver. Please take care of yourself. I would like someone, anyone to post here and say that they were cured of this " devil " disease without a TX!!! Wouldn't that be incredible? Hugs, Biddy > Re: SYMPTOMS > > > Biddy, > I am so sorry that you are feeling so bad. You were one of the > first to talk > with me and make me feel comfortable here on this site. And the > fact that you > and I seem to have a lot of the same symptoms make me feel for > you. I wish > that you would go to the doctor, maybe they can do something to > make you more > comfortable. I also know what it is like to have a doctor that > seems to pooh > pooh everything, (must be the same symptoms thing) but I am in > the process > as slow as it is) of finding another one that will be more > compassionate and > caring along with the medical side, I hope I can find one, it is > not to late > for you to find one to work with, although I know it is a very > exhausting job. > I pray that you live a lot longer, and a good quality of life too! > Love and Prayers > Vicki Oh 38 dx PSC 6/99 > > ------------------------------------------------------------------------ > Was the salesman clueless? > Productopia has the answers. > http://clickhere./click/555 > > > > eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.