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1 day ago · Crohn’s Disease - Qs about medications in Digestive Health

Well said!!! I, too, was terrified of the side effects of taking biologics for Ulcerative Colitis, and resisted until the UC became "fulminant" and I was advised to see a colorectal surgeon. Taking biologics was the last step before a colectomy so I started Entyvio in July 2019. Entyvio has been FDA approved for Crohn's and Ulcerative Colitis and it has a better safety profile than some of the other biologic drugs out there. I am happy to say that I have been in remission about 4 months and I believe it is not just the Entyvio. I started a plant based diet a couple weeks before starting the Entyvio and believe the combination is working! I, too, hope to stop taking it at some point and rely on just the plant based diet. I am not at that point, however, after only being on the biologic since July. I have discussed this with my GI doctor and while he supports the plant based diet, he said that there is no de-escalation data when stopping Entyvio, as it has only been FDA approved since 2014. So, we will revisit that in about a year, depending on how I'm doing and responding to the infusions. All I am doing is the Entyvio and the diet – no steroids, no anti-inflammatory drugs. I take the probiotic VSL#3, calcium, and a good multivitamin. You're right in saying that taking the drugs, while being closely monitored, is less scary. In fact today, I had my scheduled infusion and happened to be next to a woman that had been on Entyvio for 3 years to treat her Crohn's disease and she said it was life changing for her. It was so comforting to meet someone on Entyvio! We talked while having our infusions about the drugs, diet and how these conditions have changed our lives. We are both grateful that we are responding to the same drug, have an excellent GI doc and are feeling better now than we have in years! So, I agree that there absolutely is a place for these drugs in treating IBD, and I also agree that a dietary approach is just as important. My personal long term goal is to rely on the plant based diet and no longer need the drugs. One day at a time….

Tue, Nov 19 11:13am · Crohn’s Disease - Qs about medications in Digestive Health

I also have UC and have been on the biologic, Entyvio for a few months. While I understand the desire to stop this controversial medication, the terror of another flare keeps me from doing so. For the past two years, I have been on every tier of treatment, from mesalamine to budesonide (oral and rectal) to prednisone to finally the biologic, as each flare became worse and I was in danger of having to have my colon and rectum removed. The UC had become "fulminant." Between the Entyvio and a whole food plant based diet, within the past 3-4 months, I have finally reached clinical remission. When I saw my GI doc 2 weeks ago, he gave me a Rx for more labs (C-reactive protein and Calprotectin) to check blood and stool and also wants to do another colonoscopy to check and biopsy mucosal lining. While I want to wait a few months for that (it has not even been a year) I will have the labs and continue the Entyvio infusions, which he stated, would have to be taken for "life". I said I'd like to revisit that in a year, as these are medications with many side effects. He told me that there is not clinical evidence in "deescalating" this drug, because it has been FDA approved (for Crohn's and Ulcerative Colitis) for only a few years (2014). He also said that when one takes a "drug holiday" the likelihood of another flare is greater and that statistically, the flares become harder to manage. It has only been a few months since I was in the bathroom 12-15 times a day, doubled over with bloody diarrhea, losing a half a pound a day. That in itself keeps me having the infusions every 8 weeks, as prescribed. So, yes, I have absolutely thought "to heck with this medicine" as I'm feeling better than I have in years, but the memories of the hell I've lived with each flare keeps me on it. Maybe I will revisit that thought in a year, while being closely monitored. And maybe there will be enough clinical evidence on deescalating or weaning off of Entyvio. There are so many clinical trials and so many studies on UC and Crohn's, I am hopeful that there will be safer treatments or maybe even a "cure" some day…..

Tue, Nov 19 11:13am · Crohn’s Disease - Qs about medications in Digestive Health

The side effects I’m experiencing are mainly sinus congestion and fatigue (primarily the days I have the infusions). There are other side effects that people experience and it does affect your immune system. That’s the biggest concern for me!! Mesalamine worked for me for the couple months I was on it, until I developed drug induced pancreatitis. I was told to discontinue it immediately and within 13 days, started bleeding again and went into the worst flare I have ever had. Within weeks the diagnosis was “fulminant” and despite taking oral and rectal budesonide and then prednisone, the flare continued. The biologics were my last hope before surgery, so I reluctantly agreed to start the Entyvio. It was my last shot at something other than a colectomy. I was terrified and desperate, but it was all I had left to try… The doctors and the company that makes it (Takeda) are very clear about the many potential side effects and you are monitored closely at the infusion center at the hospital during each infusion. I’ve been on it since July and I am finally in remission. I’m cautiously optimistic that I will stay in remission and that I won’t have some of the really bad side effects that are possible while taking Entyvio. I also started a plant based diet a week before starting Entyvio and believe that is helping too. If I had been able to maintain remission on the mesalamine, I would not have started biologics. There are many more risks. If you’re in clinical remission on mesalamine, you may not have to advance to the next tier of treatment! I wish you luck and remission!!

Tue, Nov 19 11:13am · Crohn’s Disease - Qs about medications in Digestive Health

The fact that you haven’t had a UC flare for that many years is fantastic!! You are indeed managing well! I’m so sorry you had to deal with the cancer in addition to the UC, and I’m sure that since they caught it early and you’re so aware, you will beat this too! Again, the very best of luck, good health and continued remission! 🤞🙏❤️

Mon, Oct 21 11:56am · Entyvio and hair loss in Digestive Health

Hi! I too have heard about hair loss from people taking Entyvio. I started the infusions in July and just completed the 4th one last week (for UC). While I have noticed my hair seems a little brittle and dryer, it is not falling out. I asked my GI doc about this side effect and he believes that the disease states are what causes the hair loss, as he claims there is no clinical evidence to support this. Of course he’s a scientist and clinical evidence is their thing. Lol. The only side effect I have with Entyvio is the sinus congestion and sometimes a sore throat. I am getting around that by taking Zyrtec, which seems to help. The days that I get the infusions, I am more tired. I resisted the biologics as long as I could (until the UC was fulminant and the GI doc recommended a colorectal surgeon). I am still afraid of this drug, but it’s the only thing that has helped get me into remission after the last flare, which was the worst I have ever had! These are chronic and difficult conditions and I try to take it one day at a time. For me, a whole food plant based diet has helped too. Good luck to your daughter!!! I hope the treatment works and she can reach and maintain remission!! 🙏

Tue, Oct 8 9:01am · Colitis – Microscopic/Lymphocytic/Ulcerative in Digestive Health

Hi! First of all, I am so sorry your son has UC. Yes it is a chronic condition, but there are several ways to treat it and some people do very well with first line treatment. I am assuming the doctor has prescribed mesalamine (some brand names are Lialda, Canasa, Asacol). These can be taken orally, rectally or both. If the UC is ulcerative proctitis, they usually start you with the mesalamine suppositories. Some people stay at that level and do well on these drugs for years! I started with proctitis but the UC continued to move up the lower intestine and became pancolitis. The oral mesalamine and suppositories worked well for me the first few months and I believe they would have continued to work well, but I developed drug induced pancreatitis and had to discontinue immediately. That's when things became worse quickly and it was a struggle and a learning curve to see what else would work.

I am hoping your son does well with the mesalamine! Next line would be steroids and they usually start you with budesonide, which is safer than prednisone, but either one is short term, just to calm things down; they are both available rectally too. I am currently on the biologic infusion, Entyvio, and that seems to be working well; however, I had started a plant based diet a week before starting the infusions and I am thrilled to report that things have been "normal" for almost 3 months! There has been NO bleeding, no diarrhea and bathroom visits have decreased from 12-15 daily to 2-3! I have also been maintaining weight (I had been losing a half pound a day!) Despite the science behind the biologic, my doctor strongly supports the plant based diet, and there is a lot of clinical evidence that it does indeed make a difference. If he starts out slowly, just eliminating dairy, and then meat… it may be less painful. I personally don't miss meat at all, but I do miss cheese and ice cream, but this new way of eating is a small price to pay after what I have been through. When my doctor told me a few months ago that the UC was fulminant, and recommended a colorectal surgeon, I was terrified.

So I would recommend that he try the mesalamine (I am assuming that's what he'll be taking). I hope and pray this will work for him and the UC will stay at this level!!! I am also taking the probiotic, VSL#3 (also recommended by my GI doc) twice a day. So, that, a plant based diet, and exercise are what I would advise, based on my experience. It is a horrible disease, but there is hope and there are many things out there that do work. Everyone is a little different in how they respond to different treatments. His doctor can monitor with labs (blood and stool) to check the inflammation markers and scope to check the mucosal lining, I wish you the very best of luck and hope I have answered some of your questions. Please don't hesitate to reach out if you have any other questions. It's amazing how much you learn when you have a condition like this, and you get to the point where you're not even embarrassed talking about poop. LOL
Good luck
Donna