My daughter, Vivienne, has early stage PSC and ulcerative colitis. The UC is under excellent control and she is taking around 10 mesalamine tablets a day. She gets yearly colonoscopies because of her risk for colon cancer. At her last colonoscopy, her GI doctor said he wants her to start taking intravenous Remicade (infliximab) because her colon looks "diseased." This was a surprise because her diarrhea symptoms were totally controlled. He told her he would give her 4 months to think about this. (I usually go with her to her doctor appointments but did not go that day.) She is 31, a school teacher, and has a husband and 2 children. Long story short, she has decided to do nothing. I am a medical professional (a nurse practitioner) and I have implored her to at least get a second opinion. She says she no longer wants to talk about the subject. I spoke to the physicians I work with and they said they thought the new drug would be "preventative"--in other words, to prevent further damage to her colon. But the articles I looked at say it should be for those who need it for their uncontrolled symptoms. The side effects are also concerning. I also worry about the relationship between the drug maker and the MD. Anyone have any words of advice for me?
I am only new at this however, all i can say is dont give up. Stay in the fight. Seek different opinions and techniques. Something may change even for a small positive step. You can only advise on current research and findings. Has she looked through this forum? All the best wish your family well.
What is she doing for her PSC? My daughters PSC and UC symptoms totally normalized with oral vancomycin treatment. She takes nothing else for either. But not all vancomycin generics are the same. I am advised by her doc that the Prasco generic works best to get rid of the residual inflammation in the colon. I chose not to put her on remicade. If you choose that route there are 4 new biologics that are much more specifie to the colon and thus less dangerous to the immune system. vedolizumab is one.
Is it ok to know how old your daughter is?
Cactusgirl said:
What is she doing for her PSC? My daughters PSC and UC symptoms totally normalized with oral vancomycin treatment. She takes nothing else for either. But not all vancomycin generics are the same. I am advised by her doc that the Prasco generic works best to get rid of the residual inflammation in the colon. I chose not to put her on remicade. If you choose that route there are 4 new biologics that are much more specifie to the colon and thus less dangerous to the immune system. vedolizumab is one.
Vivienne is 31 and just takes mesalamine for the UC and nothing for the PSC. She used to take ursodial but not any more.
So sorry…just noticed that you already had her age in your original post…best wishes and positive thoughts.
I would go for a 2nd opinion. I am on Remicade for chronic pouchitis and only take it to manage symptoms.
I can't really give you words of advice, but I just wanted you to know I totally hear you. My daughter is six years old and has both these diseases, plus kidney disease. She is currently on Ursdiol and Sulfasalazine plus Imuran and Predisone. I am not happy with her medications, but....
I can understand your daughter's stance. Let her seek another opinion. I hate the drugs that manipulate the immune systems. Has she tried eating differently. I know alot of people that suffer from the diseases you name have seen a vast improvement by changing their diet.
Good luck and we are all with you.
Hopefully you can continue to encourage her for a second opinion in regards to the medication. I had UC for 12 years and what I thought was mild. But in 2012 I had a total colectomy. Because they found high grade dysplasia
MM,
Remicade is a very serious drug with lots of side effects. I have had three remicade infusions and had no improvements, so we stopped. I also question the preventative use of the drug. At $5,000 an infusion, it better do something definitive.
The best thing I remember about the infusions were two hour naps I had the second and third time, and on the first one, I fell asleep as the liquid benedryl kicked in.
But I can understand her reluctance to take a new/more drugs. I had to be careful since 6mp and mesalamine gave me pancreatitis. Any derivative/kissing cousin of these drugs were out.
Going on jpouch.org was a huge help tome when I had UC; I highly recommend it.
My husband had ulcerative colitis for 30+ years and developed PSC. We kept him off medications because he didn't like the way they made him feel. His doctors still can't believe he isn't taking any prescription drugs. He is physically active and, while he isn't thrilled to rein in his urges to over indulge, we found his diet was a contributing factor to his flare ups - as was stress, in a big way. Years ago, I researched food as medicine and found Donna Gates and Dr. Sandra Cabot to be the most helpful in recommending healthy diets to help with colitis and PSC. We continue to refer to their books and sites. Preventive medicine does not have to be pharmaceutical. My husband responded very well to a lower fat, low sugar diet of whole foods ( no artificial sweeteners, no high fructose corn syrup, no hydrogenated or partially hydrogenated oils, no meats with hormones and antibiotics, etc.) supplemented with green drinks, probiotics and Livatone Plus liver support. A year ago, our naturopath added SAMe ( an amino acid) to his protocol and his liver enzymes were quickly reduced to levels he hadn't seen in 30 years. They are not normal, but they nearly are. When stress was an issue, he reluctantly went for acupuncture and found it made him relax to the point of falling asleep during the treatments. He has lived long enough with his health issues to know what works for his body and if he doesn't follow through, he may suffer consequences. Your daughter needs help finding the right supports, but she will have to commit to practicing what helps her to avoid progression of the disease. Our bodies are truly amazing in their ability to heal when they are supported with healthy food, sleep and a positive attitude. Encourage your daughter to research health through diet - it will help her family, too - and tell her not to be discouraged. She can "turn the tide" of her disease by educating herself and being proactive.
I would get the colonoscopy images and pathology report and have them reviewed by another GI. The question would be whether the tissue looked as "diseased" as the first doctor said. Secondly, is Remicade a good option that would slow the disease process. Read up and learn about Remicade's side effects. You might find personal experiences on this blog about using Remicade.
I had UC/PSC, and received a live donor liver transplant in 2012. My UC remains after transplantation, but it has been in remission, except for brief flare ups since 1995. I was offered Remicade 4 years ago as something that would help guarantee my remission. All my strength was going to fighting the PSC, and they did not want my UC to flare up. I decided not to take Remicade because I did not want to risk a reaction to it. That was a good choice for me. Maybe, I was lucky not to have any UC flare ups prior to transplantation. I don't know, but sometimes you have to decide things just on what you feel is best.
I understand your daughter's desire not to talk about UC. Don't take it personal or think you have badgered her too much and she has shut down on you. I think she just wants to deal with it herself, for now. There will come a time she will welcome your opinion, and it will come sooner if you don't bring the subject up. I know. She thinks about it every time she take her meds, or intestinal distress ruins her day or family outing. It's bad enough to have this "thing" that is always a factor in your life, and then have to contemplate a biologic medicine, when you want to focus on your family and your kids at school (Im and educator, too). You feel angry that life has dealt this condition to you.
Give your daughter some space. UC gets worse slowly. There is time for her to think about her options. Trust me, she is thinking about them, though you may not think so. My initial major flare-up took 13 months to heal, and the doctor would say, it may be better just to remove your colon. Do you really want to suffer with this? Yes, I'd rather suffer than have my colon removed. I made the right choice. My little girl and wife worried about me all the time. They saw me through. We became a strongly bonded family. Later, that was tested in a worse way as I got sick with PSC and neared the end of life. I am now in perfect health with no PSC. They have been there for me always. They have respected my choices and I have appreciated their input.
Trust your daughter's judgement. I would get a second opinion about the colonoscopy results before making judgment about Remicade. And, if you are concerned she may have PSC or PBC, a simple blood test can tell if the liver enzymes are elevated, which suggests the possibility of either disease. A liver biopsy is necessary for conclusive diagnosis.
Peace be with you,
Paul
Please urge her to get a second opinion. If her UC is "well controlled" why are they recommending a new, stonger medication? It seems odd to me. I have had UC for over 20 years, and have been on a maintenance dose of asacol for most of that time.I also have PSC, and am currently on the transplant list. I realize all UC patients are affected differently and need different therapies, but I would think that if things are under control, why rock the boat? Having to prep for, and undergo another colonscopy by a different seems a small price to pay to either get a confirmation on the first opinion, or a recommended different approach. Good luck. It would be hard to have the disease yourself, but I can imagine how hard it would be to coax another person to do something related to his/her treatment. Keep researching and sharing what you learn about this new drug with her. Hopefully, she will "see it your way". :)
Hi everyone, I had PSC for 17 yrs and had a live donor transplant 5yrs ago, was in fantastic health after the transplant so I thought until this past April, I woke up and was jaundice, no signs in the 5 yrs. After all the testing and biopsies they tell me the PSC has returned and I will probably need another transplant in 2 yrs or so. If anyone can give healthy diet tips, books to read, I would greatly appreciate it.
Thanks,
LeeAnne
Please go for a second opinion. You are correct the side effects are a bit concerning, My sister had to go thru the same medicine and was not pleasant. Thank god she is in complete remission at the moment but is very cautious on food intake. Do look for alternate treatments also like integrative medicine. I hear they do wonders for some people. Do not have any experience though just sharing my opinion,
Paul Hain said:
I would get the colonoscopy images and pathology report and have them reviewed by another GI. The question would be whether the tissue looked as "diseased" as the first doctor said. Secondly, is Remicade a good option that would slow the disease process. Read up and learn about Remicade's side effects. You might find personal experiences on this blog about using Remicade.
I had UC/PSC, and received a live donor liver transplant in 2012. My UC remains after transplantation, but it has been in remission, except for brief flare ups since 1995. I was offered Remicade 4 years ago as something that would help guarantee my remission. All my strength was going to fighting the PSC, and they did not want my UC to flare up. I decided not to take Remicade because I did not want to risk a reaction to it. That was a good choice for me. Maybe, I was lucky not to have any UC flare ups prior to transplantation. I don't know, but sometimes you have to decide things just on what you feel is best.
I understand your daughter's desire not to talk about UC. Don't take it personal or think you have badgered her too much and she has shut down on you. I think she just wants to deal with it herself, for now. There will come a time she will welcome your opinion, and it will come sooner if you don't bring the subject up. I know. She thinks about it every time she take her meds, or intestinal distress ruins her day or family outing. It's bad enough to have this "thing" that is always a factor in your life, and then have to contemplate a biologic medicine, when you want to focus on your family and your kids at school (Im and educator, too). You feel angry that life has dealt this condition to you.
Give your daughter some space. UC gets worse slowly. There is time for her to think about her options. Trust me, she is thinking about them, though you may not think so. My initial major flare-up took 13 months to heal, and the doctor would say, it may be better just to remove your colon. Do you really want to suffer with this? Yes, I'd rather suffer than have my colon removed. I made the right choice. My little girl and wife worried about me all the time. They saw me through. We became a strongly bonded family. Later, that was tested in a worse way as I got sick with PSC and neared the end of life. I am now in perfect health with no PSC. They have been there for me always. They have respected my choices and I have appreciated their input.
Trust your daughter's judgement. I would get a second opinion about the colonoscopy results before making judgment about Remicade. And, if you are concerned she may have PSC or PBC, a simple blood test can tell if the liver enzymes are elevated, which suggests the possibility of either disease. A liver biopsy is necessary for conclusive diagnosis.
Peace be with you,
Paul
Mmonas said:
Paul Hain said:I would get the colonoscopy images and pathology report and have them reviewed by another GI. The question would be whether the tissue looked as "diseased" as the first doctor said. Secondly, is Remicade a good option that would slow the disease process. Read up and learn about Remicade's side effects. You might find personal experiences on this blog about using Remicade.
I had UC/PSC, and received a live donor liver transplant in 2012. My UC remains after transplantation, but it has been in remission, except for brief flare ups since 1995. I was offered Remicade 4 years ago as something that would help guarantee my remission. All my strength was going to fighting the PSC, and they did not want my UC to flare up. I decided not to take Remicade because I did not want to risk a reaction to it. That was a good choice for me. Maybe, I was lucky not to have any UC flare ups prior to transplantation. I don't know, but sometimes you have to decide things just on what you feel is best.
I understand your daughter's desire not to talk about UC. Don't take it personal or think you have badgered her too much and she has shut down on you. I think she just wants to deal with it herself, for now. There will come a time she will welcome your opinion, and it will come sooner if you don't bring the subject up. I know. She thinks about it every time she take her meds, or intestinal distress ruins her day or family outing. It's bad enough to have this "thing" that is always a factor in your life, and then have to contemplate a biologic medicine, when you want to focus on your family and your kids at school (Im and educator, too). You feel angry that life has dealt this condition to you.
Give your daughter some space. UC gets worse slowly. There is time for her to think about her options. Trust me, she is thinking about them, though you may not think so. My initial major flare-up took 13 months to heal, and the doctor would say, it may be better just to remove your colon. Do you really want to suffer with this? Yes, I'd rather suffer than have my colon removed. I made the right choice. My little girl and wife worried about me all the time. They saw me through. We became a strongly bonded family. Later, that was tested in a worse way as I got sick with PSC and neared the end of life. I am now in perfect health with no PSC. They have been there for me always. They have respected my choices and I have appreciated their input.
Trust your daughter's judgement. I would get a second opinion about the colonoscopy results before making judgment about Remicade. And, if you are concerned she may have PSC or PBC, a simple blood test can tell if the liver enzymes are elevated, which suggests the possibility of either disease. A liver biopsy is necessary for conclusive diagnosis.
Peace be with you,
Paul
My daughter got pancreatitis from azathioprine (imuran). Just got her calprotectin results and liver function test after switching to Prasco oral vancomycin for 5 weeks - everything is normal. Has she considered trying OV?
About a year ago, my daughter (29) was diagnosed with PSC after having several years of Remicaid treatment for her uncontrolled Crohn's disease. She was one of the patients who had the severe allergic reaction to Remicaid that necessitated injections to keep her breathing. The Remicaid treatments and allergic reaction treatments went on for several years.
I am of the opinion that though Remicaid minimized her Crohn's flares, it played havoc with her body and worsened her liver condition (and made her feel awful for several days afterward).
She no longer has Remicaid infusions, but doesn't seem to be any more likely to have a Crohn's flare. I suggest avoidance of this medication at all costs, especially if the flares are well controlled.
Ulcerative colitis question
Several have already responded by telling that Mesalazine (a.k.a. Salofalk) helps with one of the Primary Sclerosing Cholangitis (PSC) symptoms: namely: Ulcerative Colitis. Masalazine has helped in my case, but this drug is not a cure for the main problem: PSC. So far, there is no other cure for PSC than a liver transplant, PSC has other symptoms some of which do not show up readily such as colon cancer..
Your daughter may not be wanting to talk about her disease, but should take medical advice seriously. If she does not trust her specialist's advice I would recommend that she get a second opinion.