Systemic IBD, Systemic Anti TNF Therapy
Age 45, advanced Crohns, now Diagnosed with Systemic IBD (irritable bowel disease) complete with brain lesions, left sided partial paralysis, vision difficulties. New treatment proposed is Systemic Anti TNF Therapy. Grim outlook. Anyone here experienced similar or same symptoms and/or treatment?
Interested in more discussions like this? Go to the Digestive Health Support Group.
Hello @katie215 — Welcome to Connect. I know you have a lot on your plate and are trying to find some answers. Connect is a good starting place. You might want to read through the list of discussion in the Digestive Health Group to see if you can find members that share some of your symptoms. Here is the link to the group:
I'm also tagging our Moderator Kanaaz @kanaazpereira to see if she might have some suggestions for you. I did find some information that may be helpful for you on anti TNF therapy.
Anti-tumor necrosis factor treatment restores the gut barrier in Crohn's disease (2002)
OP013 HLA-DQA1 contributes to the development of antibodies to anti-TNF therapy in Crohn’s disease FF (2018)
DOP037 Postoperative anti-TNF therapy is associated with a significant reduction of both endoscopic and clinical recurrence following surgery for ileocolonic Crohn’s disease: results of a prospective nationwide cohort conducted by the GETAID chirurgie group (2018)
@katie215 do you have any specific questions or concerns about the anti TNF treatment?
Thank you so much for these references John. I will surely read. The patient is actually my daughter, A Canadian, now living in Zadar, Croatia. The treatment I mentioned is what is being proposed by physicians there. May I ask you…does Mayo Clinic do this kind of evaluation and treatment in the US?
@johnbishop Am so new here. Did you see my note above, by any chance.
Hi @katie215 – I did see your note. Working from my phone right now and not too good at it. Will post Mayo contact info when I get back home. @kanaazpereira can you answer @katie215’s question?
Hi @katie215 – sorry I didn't see your question sooner. When I saw it I was using my cellphone and I'm not much good at texting answers ☺ Mayo Clinic has an excellent IBD care team. You can read more about the services and make an appointment from the following Mayo Clinic web page. There is contact information for each of the three locations near the bottom of the page – Arizona, Minnesota, and Florida:
I'm so glad you've joined Connect on behalf of your daughter – managing a chronic condition is a tough journey, but you don’t have to do it alone. I’d like to start by connecting you with other members who have experience with Crohn’s — either themselves or a family member. Please meet @bonitav @mswanda @kaycigirl @judylindholm @gillyk14 @thankful @spiderwebb @jay_baruch @guener @joannem @chicoco @gillyk14 @kaycigirl, @tracyann @1228angela @amyk811 @jkellyjones @lisa1965.
You can view their messages in these discussions:
– Crohn's disease https://connect.mayoclinic.org/discussion/crohns-disease-2ed085/
– Diagnosed with Crohn's but having weird symptoms https://connect.mayoclinic.org/discussion/diagnosed-with-crohns-but-having-weird-symptoms/
I'd also sincerely encourage you to view the Gastroenterology & GI Surgery Page on Connect, https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/ where you will find many videos by Mayo Clinic experts, discussing IBD, recent news, medication and treatments.
Here are some that might be of interest to you:
Dr. Sunanda Kane, M.D., discusses the efficacy of anti-TNF agents for Crohn’s disease.
Dr. Edward Loftus, M.D., reviews a study in which researchers reported on the safety profile of vedolizumab (Entyvio)
Dr. Kenneth Schroeder M.D., talks about Endoscopic balloon dilatation (EBD) as a recognized treatment for symptomatic Crohn's strictures.
@katie215, what concerns does your daughter have about Systemic Anti TNF Therapy?
My apologies for the multiple posts @katie215, but I wanted to answer your question: "Does Mayo Clinic do this kind of evaluation and treatment in the US?"
Mayo Clinic in Rochester, Minnesota, has been recognized as the best gastroenterology and GI surgery hospital in the nation by U.S. News & World Report. Each year, Mayo Clinic doctors diagnose and treat more than 9,000 adults and children with inflammatory bowel disease, including Crohn's disease and ulcerative colitis. Mayo Clinic specializes in helping people with severe symptoms that haven't responded well to treatment in the past. You can read all the details here: https://www.mayoclinic.org/departments-centers/gastroenterology-hepatology-digestive-care/sections/overview/ovc-20348241
@katie215, Your daughter's situation certainly sounds complex and serious, I am sorry to hear it. As has been mentioned, Mayo has an outstanding team of IBD specialists and other great physicians in all areas of healthcare. I'd certainly recommend them, even though I am only familiar with other family members having been treated there (in Rochester). As to the anti-TNF therapies, I can relate by taking Humira (adalimumab), and it has been quite effective for me in terms of reducing systemic inflammation that resulted in diarrhea, weight loss, joint pain, and colonic bleeding. Not everyone responds to one biologic drug the same way, and it can be trial and error to find one that works for somebody. Also, each biologic drug can present its own side effects, though I have had none on Humira. I'm not familiar with IBD having a relationship to brain lesions, since it attacks primarily the digestive tract but can result in other symptoms systemically (like the joint pain for me). In a complicated case with your daughter living abroad, it would be a good idea to get some other opinions, especially in Canada or the U.S. to follow up on care options and especially the brain/nerve injury, too. I wish your family success in finding working solutions for your daughter, and prompt relief in all aspects!
@guenther Thank you so much fir this information. What I neglected to add to my original post was met daughter's added complication of Whipple's Disease which is complicating IBD treatment. To my understanding the treatments conflict..in that treatment fir one exacerbates the other disease and vice versa. Hope I've clarified somewhat. It's a very serious situation and her being 6000 miles away isn't helping.
@katie215 , Well, Whipple's Disease sounds very difficult, too. (Looked it up.) The antibiotics for treatment of Whipple's could definitely impact the IBD symptoms possibly and potentially put the gut into risk while lowering immune capability alongside any biologic. You probably do need some specialists to coordinate her treatment for multiple conditions and to get the medications right for what works for everything. My mother got ill while abroad and had to come back to the U.S. for treatment at the Mayo clinic, and it was some weeks before she was able to return "home" overseas but was worth the time and effort to get the treatment. It could be a very difficult idea to decide its time to return, at least temporarily, back to North America for help. I wish your daughter success in getting through this all in the best way possible. And better days and less worry for you, too. There are great support groups on Facebook for Crohn's disease and Ulcerative Coltis, BTW.