Entyvio (Vedolizumab) Support Group

Crohn's Disease Forum

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EastCoast902 said:
I have my 6th tomorrow. They normally need 20 minutes minimum to mix the drug, which they don't start until you get there, and sometimes until after you are hooked up. I have no side effects that I can say are because of Entyvio- anything I have I had before. Normal old age aches & pains.
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Hey have you noticed any bowel changes? I've gotten constipation for the first time in about 25 years. It's odd. Not sure if it's just the narrow TI or Envivo.
 
sandrasiemens said:
Hi everyone
Been a rough week. Have been in the hospital for crohn's flare and c-diff. I am back up to 60 mg of pred and vancomycin for the c-diff. I was taking cimzia injections for nearly a year, but last colonoscopy showed inflammation. Gastro now wanting me on entyvio. Dr. gives me morphine injections for my crohns. Do any of you receive morphine for your pain or is there something else that works?
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I'm in hospital right now for my flare and complications with compaction. I've gotten shots of morphine through my IV in the past. They also tried another one I'll have to ask tomorrow what it was it didn't work well for me but I think it's because it infiltrated my arm from her pushing it too fast. Dilaudid I had twice, it was good the first time but got too freaked out from it the second time way to ansey from it.

Take care.
 
My insurance has approved Entyvio. I am scheduled for my first loading infusion this Thursday. I am wondering what type of reactions to Entyvio that I should look out for? Could anyone give me some advice?
 
DougUte said:
My insurance has approved Entyvio. I am scheduled for my first loading infusion this Thursday. I am wondering what type of reactions to Entyvio that I should look out for? Could anyone give me some advice?
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I just had my second dose. There was some pain at the infusion site but not bad. So far not side effects for me. The most common side effects of ENTYVIO include: common cold, headache, joint pain, nausea, fever, infections of the nose and throat, tiredness, cough, bronchitis, flu, back pain, rash, itching, sinus infection, throat pain, and pain in extremities.

I have gotten bad constipation for the first time in my life but it could be from budesonide and a lifetime of eating to avoid the runs. So if this is really working this fast for me then I have to think of how to eat again, seems simple but when you've done something for over 13 years it's going to take more research.

This was nothing compaired to Remicade infusion. No benadryl needed. I wish you luck.
 
GI Jane said:
Hey have you noticed any bowel changes? I've gotten constipation for the first time in about 25 years. It's odd. Not sure if it's just the narrow TI or Envivo.
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I do find that my BMs get a lot more solid a few days to a week after the infusion and it usually lasts about a week.
 
I havn't posted in quite some time, my Crohn's is manageable using diet, pain meds and salofalk enemas. A year ago I tried Remicade, but was forced to stop after the 3rd infusion due to a wide range of symptoms. Abdominal pain that was agonizing at times, Malar rash that left my face peeling like old paint, hair loss, pounding heartbeat and swollen ankles and others. I also have a colostomy for the past 15 years. I couldn't keep the bag glued on for more than couple of days for months after my last Remi infusion. It took over 6 months before I could keep the bag on for its expected duration of about 5 days.
Gastro doc would now like me to try Entyvio, but upon reading up on it, its another biologic, and after Remicade I am very nervous of trying it. I don't want to rock the boat on my health again. I couldn't do anything on Remi, and this winter I am back to cross country skiing again. What to do, stay the course I am familiar with using a minimum of meds, or go try the big guns of Entyvio and risk another lengthly and potentially dangerous setback. I don't like gambling with health.
 
I had my first Entyvio infusion last Thursday. The infusion itself was fine. I did have a problem with extreme fatigue. I slept Thursday evening. Most of the day on Friday and Saturday. Sunday I began to return to normal. How common is a fatigue attack after the infusion?
 
DougUte said:
I had my first Entyvio infusion last Thursday. The infusion itself was fine. I did have a problem with extreme fatigue. I slept Thursday evening. Most of the day on Friday and Saturday. Sunday I began to return to normal. How common is a fatigue attack after the infusion?
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Tiredness seems to be an unending battle. It's hard not having the energy to do what I was used to doing. Trying to find other things to do like genealogy and photo editing and albums for family.
 
I've been on Entyvio for over a year, along with methotrexate for the last 2 months. I'm still running to the bathroom right after eating, have severe fatigue. I was on remicade, but developed allergy to it. Was diagnosed with Crohn's 6 years ago. Is this the best I can expect? The only thing that seems to help are steroids, but I hate to be on them long term. Any ideas? Thanks!
 
Hello Everyone, I'm hoping I can get some feedback and advice. I have had Crohn's since 1989 I have been on EVERY medicine there is. After my recent flare I have started Entyvio I go for my 3rd infusion on 3/9 I dropped to 85 lbs in Dec. and was hospitalized for 5 days. An NG Enteral feeding tube was inserted and I was sent home with it for 6 weeks (removed 2/9) I did great and gained 20 lbs. I have been maintaining at 102 lbs. Well this morning I get on the scale and dropped to 99 lbs. I eat the best I can and have several boosts a day but as you all know who wants to eat when it causes pain and diarrhea.
My question to anyone is for advice for nutritional help with gaining weight, shakes, smoothies whatever has worked for anyone else. I CAN'T have CORN (in any form) non gmo only please. I can't digest fruits & veggies that's why I say smoothies & shakes. Thanks in advance Donna
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Coconut oil in smoothies and so does coconut milk. Peanut butter and chocolate smoothies with coconut add a lot of calories.
 
I started the drug about 2 months ago and it is working for me. Have had 3 infusions the next one is 8 weeks from now . The only side effect is I have alot to swelling in my lower legs and it hurts like hell.
Jim
 
Hi, I've just joined this forum as I've got to the stage that I'm feeling frustrated as my family and friends just don't understand this disease. My 2nd infusion is on Tuesday . This is last chance saloon for me. If vedo does not work I've to have another resection. Crohns came back 6 months after the last one. I'm on pred just now along with ensure and eating one low residue meal each day. It's going to be difficult to know when vedo is working because of all the steroids and ensure. I have an appointment on the 28th to see if I am any better, but reading this forum, vedo is taking quite a few months to work on people. On a plus note, it's the first drug I've had, that hasn't caused a bad reaction. The last drug was infiximab and the joint pain was awful!
 
Gemmcn said:
Hi, I've just joined this forum as I've got to the stage that I'm feeling frustrated as my family and friends just don't understand this disease. My 2nd infusion is on Tuesday . This is last chance saloon for me. If vedo does not work I've to have another resection. Crohns came back 6 months after the last one. I'm on pred just now along with ensure and eating one low residue meal each day. It's going to be difficult to know when vedo is working because of all the steroids and ensure. I have an appointment on the 28th to see if I am any better, but reading this forum, vedo is taking quite a few months to work on people. On a plus note, it's the first drug I've had, that hasn't caused a bad reaction. The last drug was infiximab and the joint pain was awful!
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I've only had three in infusions and my markers are down already. Also having formed bowel movements which is so weird after so many years. Still looking at my first surgery for my damaged TI but they and I am hopeful that this medication is the one.
 
I had my 3rd (loading dose infusions ) today. I'm pleased to say in the last week I have started feeling great and feel positive the Entyvio is working. Now to get my weight up I'm making slow progress from 85lbs. on 12/30/16 to 102 lbs. today. For those who are just starting out on Entyvio be patient it takes time to work. Stay positive and God Bless :dusty:
 
I'm a 54 year old female and have my first dose of Entyvio today and am slightly nervous. Have been feeling better since my last trip to the ER about two weeks ago for severe dehydration, severe nausea, and diarrhea. Scared of the side effects. I'm currently on Pentasa and Entocort, Dicyclomine, Hyoscyamine, Zofran, Omeprazole and Imodium. Oxycodone when abdominal pain is severe. I also have IBS, Fibromyalgia, Thyroiditis, Mixed Connective Tissue disease and had Renal Cell Carcinoma where I lost one kidney but have been in remission for 12 years. I've been one screwed up puppy! :ack: My body seems to fight itself everywhere. Any helpful hints or ideas to help would be appreciated. Thanks!
 
Hello Entyvio people.
Been a while since I been on here. I feel good.
Entyvio every 6 weeks with MTX is still the recipe for me. Been on it over 2 years now.
Routine procedure next week hopefully will confirm improved condition.

Leibee... Hopeful that you will have no side effects. Occasional mild headaches is the only effect on me. I'll take that any day over the alternative.
I think the Entocort your on is a corticosteroid and like prednisone, it's probably helpful to knock down a flare up, but not good to use long term. Pentasa is the most mild, but probably a waste of money for moderate and more severe conditions. You should be able to drop some meds if Entyvio works. Ask your Doc. Good luck.
 
I don't know when I will be starting but I hope it works for me. I have been on Cimzia, Remicade, Stelara and Humira.
 
I have finally got my insurance all figured out. The insurance is going to cover the first 2 doses of Entyvio which they previously refused to cover. I was looking at owing $30,000.00 to the infusion clinic. Future infusions need to be obtained through the specialty pharmacy, Acreedo. I will likely have to postpone next Thursday's infusion, but that is much better than not having my treatment.
 
Gary said:
Hello Entyvio people.
Been a while since I been on here. I feel good.
Entyvio every 6 weeks with MTX is still the recipe for me. Been on it over 2 years now.
Routine procedure next week hopefully will confirm improved condition.

Leibee... Hopeful that you will have no side effects. Occasional mild headaches is the only effect on me. I'll take that any day over the alternative.
I think the Entocort your on is a corticosteroid and like prednisone, it's probably helpful to knock down a flare up, but not good to use long term. Pentasa is the most mild, but probably a waste of money for moderate and more severe conditions. You should be able to drop some meds if Entyvio works. Ask your Doc. Good luck.
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Gary, glad to have you back....seems like a lot of people come and go which is good since I think when you're feeling better you don't think of this disease. Welcome back.
 
Hello all -

New to this forum. Doc wants to put me on Entivio but i'm a little gun shy about infusions. Sounds too much like chemo. I've been battling colitis 34 years and lately winning until last year when doc found a small rectal tumor. knocked it out with radiation and oral chemo but didn't count on the radiation sending my rectum into a tailspin. Still recovering from the treatment six months later. That's why doc wants to add entivio to my imuran diet.

I guess what i'd like to know from the long time users of the drug if there is anything other than the headaches that i should consider before jump in. Thanks.
 
Hi theriz! Welcome to the forum.

Entivyo is a new biologic. I believe it came on the market in 2014. There are not many long-time users. I am still on the loading doses myself. I have experienced deep fatigue after the infusions, but I am told that side effect will go away over time. There is a warning about PML, but the truth is that nobody has ever come down with PML while on Entyvio.
 
DougUte said:
Hi theriz! Welcome to the forum.

Entivyo is a new biologic. I believe it came on the market in 2014. There are not many long-time users. I am still on the loading doses myself. I have experienced deep fatigue after the infusions, but I am told that side effect will go away over time. There is a warning about PML, but the truth is that nobody has ever come down with PML while on Entyvio.
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Thank you I just hope it can help me as I can't eat and keep getting dehydrated. I can't stop crying from the pain and have no one to talk to. I thank god for this site. I just wish I could meet people who understand. Thank you I hope they start it soon. ❤️Julie
 
Juulez said:
Thank you I just hope it can help me as I can't eat and keep getting dehydrated. I can't stop crying from the pain and have no one to talk to. I thank god for this site. I just wish I could meet people who understand. Thank you I hope they start it soon. ❤️Julie
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Entyvio is helping me. I think it will be good and I hope it works quickly for you. There are plenty of people here who understand what you are going through. I was wondering if you have checked into support groups in your area. I suggest trying the Crohn's and Colitis Foundation. www.crohnscolitisfoundation.org. They have groups all over the country. But this forum is a great place for an online experience.
 
Thank you so much for your info. I will call them as I haven't thought of it just moving last year and immediately becoming so ill! I hope this works too. I am having a capsule endoscopy first on Monday and I hope they start soon after as I really need to start eating this supplement makes me so sick. I enjoy this site and look forward to making friends here. Again thank you and be well as well as possible ❤️Julie
 
Hello all. Had my first infusion a week ago last Friday and I've been pleasantly surprised. My only side effect was extreme fatigue for a day or so and then I was able to function pretty normally until this Sunday when the pain returned, although not as bad, as well as the diarrhea. My second loading dose is Friday and I'm hoping as I get more of the medicine in my system I will continue to heal and can drop the Entocort, Pentasa, etc. and I won't have anymore trips to the ER for dehydration. I understand all who find it hard to get anyone to understand this disease and have someone to discuss it with. I don't won't to burden my family. My IBD clinic has it's own psychologist who I meet with as well as my doctor and my nutritionist. They believe in the whole body healing approach. It has certainly helped to have him to talk to as he is very knowledgeable about the disease. I'm also glad that I found this forum. Everyone have a great week and for those waiting for healing to begin, hang in there!
 
leibee said:
Hello all. Had my first infusion a week ago last Friday and I've been pleasantly surprised. My only side effect was extreme fatigue for a day or so and then I was able to function pretty normally until this Sunday when the pain returned, although not as bad, as well as the diarrhea. My second loading dose is Friday and I'm hoping as I get more of the medicine in my system I will continue to heal and can drop the Entocort, Pentasa, etc. and I won't have anymore trips to the ER for dehydration. I understand all who find it hard to get anyone to understand this disease and have someone to discuss it with. I don't won't to burden my family. My IBD clinic has it's own psychologist who I meet with as well as my doctor and my nutritionist. They believe in the whole body healing approach. It has certainly helped to have him to talk to as he is very knowledgeable about the disease. I'm also glad that I found this forum. Everyone have a great week and for those waiting for healing to begin, hang in there!
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Best wishes for you.
 
leibee said:
Hello all. Had my first infusion a week ago last Friday and I've been pleasantly surprised. My only side effect was extreme fatigue for a day or so and then I was able to function pretty normally until this Sunday when the pain returned, although not as bad, as well as the diarrhea. My second loading dose is Friday and I'm hoping as I get more of the medicine in my system I will continue to heal and can drop the Entocort, Pentasa, etc. and I won't have anymore trips to the ER for dehydration. I understand all who find it hard to get anyone to understand this disease and have someone to discuss it with. I don't won't to burden my family. My IBD clinic has it's own psychologist who I meet with as well as my doctor and my nutritionist. They believe in the whole body healing approach. It has certainly helped to have him to talk to as he is very knowledgeable about the disease. I'm also glad that I found this forum. Everyone have a great week and for those waiting for healing to begin, hang in there!
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hi!nice to hear that it is working for you I look forward to starting! Thank you for your post it's encouraging no more hospital because of dehydration or diarrhea and maybe I could start eating food and absorb it no more peptamen wow!!!!! I have hope!!!!! 💜💜💜thanks j
 
Entyvio is working well for me yea. Test results are coming back positive for a change. I've had 4 infusions now and the inflammation is already better. They say once they removed the damaged TI section I'm looking towards a bright future so crossing my fingers and praying.
 
GI Jane said:
Entyvio is working well for me yea. Test results are coming back positive for a change. I've had 4 infusions now and the inflammation is already better. They say once they removed the damaged TI section I'm looking towards a bright future so crossing my fingers and praying.
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I am so happy for you. I hope all continues! Keep us updated. I here great things abt entivio💜Julie
 
GI Jane said:
Entyvio is working well for me yea. Test results are coming back positive for a change. I've had 4 infusions now and the inflammation is already better. They say once they removed the damaged TI section I'm looking towards a bright future so crossing my fingers and praying.
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I am glad it is working for you. Praying for you.
 
GI Jane said:
Entyvio is working well for me yea. Test results are coming back positive for a change. I've had 4 infusions now and the inflammation is already better. They say once they removed the damaged TI section I'm looking towards a bright future so crossing my fingers and praying.
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Way to go G I Jane! I am happy to hear that news. Glad your surgery went well also.

I just had my 3rd infusion and I believe things are going well. I feel pretty good gut wise, and today is the first day after the infusion where I did not have to fight so much fatigue. Onward and upward for Entyvio.
 
I am waiting for my insurance to approve Entyvio. I'm excited to start the new drug. I have tried every biologic and none have been successful. Has anyone had treatments without negative symptoms?
 
GREAT NEWS!
Test visually confirmed how good I feel.
No sign of inflammation. Bowel looks normal and healthy.

It's been a very long road to better health. I've had crohns most of my adult life. 4 surgery's, failed Pentasa, Humira, and Stellara.
It's great that I finally found relief with Entyveo. This may sound like a commercial, but I honestly feel like I got my life back.

To those still suffering... Hang in there, always have hope and never give up.
Wishing all good health, a good day, and a better tomorrow.

Gary.
 
Gary said:
GREAT NEWS!
Test visually confirmed how good I feel.
No sign of inflammation. Bowel looks normal and healthy.

It's been a very long road to better health. I've had crohns most of my adult life. 4 surgery's, failed Pentasa, Humira, and Stellara.
It's great that I finally found relief with Entyveo. This may sound like a commercial, but I honestly feel like I got my life back.

To those still suffering... Hang in there, always have hope and never give up.
Wishing all good health, a good day, and a better tomorrow.

Gary.
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Four surgeries! Wow. I have had one in 2005 when I was 25, went into a brief remission. I am now taking entyvio which seems to be working. But man let me tell you that before entyvio a second surgery was close to coming true. After years of so much pain and hospitalizations.

Glad the drugs seem to be working for you, as well as they seem to be for me. But man how does someone get through 4 surgeries? The one I had was the worst time of my life, it sucked so so much.
 
All - I'm just going to throw this out there in case anyone has had a similar experience. I'm happy some of the newer drugs are working for you. I just have this weird aversion to drugs so for the last 34 years i've been treating myself since the doctors never really understood what was wrong with me. For those of you that have had really bad inflammation my first line of action was to eliminate sugar from my diet and minimize the carbs as much as possible. No pasta, no bread for six months to get my system to settle down. I thought maybe i had a candida infestation so i was also taking Nystatin for a while. It was a marginal help to me. Then i discovered a liquid mineral complex and things started improving. Then i discovered a seaweed based liquid vitamin, mineral, enzyme and amino acid complex and i actually got some relief. My gut started to heal and I went many years with just minimal issues. I started imuran a few years ago and that helped make things mostly normal. Except that it all finally caught up to me last year when i developed a rectal tumor. Of course the docs have only one recommendation, total collectomy. Not happening. I was in perfect health with the one small issue of the tumor which i think imuran helped to develop. Went for the oral chemo and radiation combo and knocked out the tumor but i didn't count on the radiation sending my colitis into hyper drive. Finally feeling better 6 months later but they want to start me on the Entivio.
 
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theriz said:
All - I'm just going to throw this out there in case anyone has had a similar experience. I'm happy some of the newer drugs are working for you. I just have this weird aversion to drugs so for the last 34 years i've been treating myself since the doctors never really understood what was wrong with me. For those of you that have had really bad inflammation my first line of action was to eliminate sugar from my diet and minimize the carbs as much as possible. No pasta, no bread for six months to get my system to settle down. I thought maybe i had a candida infestation so i was also taking Nystatin for a while. It was a marginal help to me. Then i discovered a liquid mineral complex and things started improving. Then i discovered a seaweed based liquid vitamin, mineral, enzyme and amino acid complex and i actually got some relief. My gut started to heal and I went many years with just minimal issues. I started imuran a few years ago and that helped make things mostly normal. Except that it all finally caught up to me last year when i developed a rectal tumor. Of course the docs have only one recommendation, total collectomy. Not happening. I was in perfect health with the one small issue of the tumor which i think imuran helped to develop. Went for the oral chemo and radiation combo and knocked out the tumor but i didn't count on the radiation sending my colitis into hyper drive. Finally feeling better 6 months later but they want to start me on the Entivio. I strongly recommend all of you become members of Life Extension. They scour the world for the latest clinical research. It's been my salvation to a large degree. Can't recommend it highly enough if you have any interest in understanding how what you feed your body affects this disease and many others.
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After trying many treatments I agree with everything you state. In every case they made me feel worse over time. Some worked better than others. My belief is that these treatments are the nuclear bombs of last resort when diet and natural means fail. These meds have their place to knock down the flare. For some they have to remain on these treatments for most of their remaining lives, for others they can sometimes go off treatment and do fine.
I am taking tumeric curuma daily in powder form mixed into a glass of water. Along with vitamin D, biotin, probiotics, magnesium zinc I can keep things on the level. I do have to take a mesalamine enema every few days to keep things quiet in my rectal area below my stoma.
 
Mellyag, I just finished my 2nd dose of Entviyo and so far, so good. Only really tired, a little discomfort at the IV infusion site, and a mild headache. I didn't have the headache the 1st time and I read on this site, and believe that they infused it too rapidly and that was the culprit. The first dose used the whole bag of saline with the Entviyo and this time, it only used 1/2 bag to the medicine. It has really helped me. I saw my Dr before the 2nd infusion and she said that was really surprised that she hadn't heard from me and that I hadn't ended up in the ER again. Hope it works well for you!!
 
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Mellyag, I just finished my 2nd dose of Entviyo and so far, so good. Only really tired, a little discomfort at the IV infusion site, and a mild headache. I didn't have the headache the 1st time and I read on this site, and believe that they infused it too rapidly and that was the culprit. The first dose used the whole bag of saline with the Entviyo and this time, it only used 1/2 bag to the medicine. It has really helped me. I saw my Dr before the 2nd infusion and she said that was really surprised that she hadn't heard from me and that I hadn't ended up in the ER again. Hope it works well for you!!
 
Thanks for all the tips on Entyvio.

Another thing for all to consider. Watch your omega 3/omega 6 ratio. High Omega 6 is a recipe for inflammation. Vegetable oils, trans fats, conventional meat and dairy products and non organic eggs. Increase your Omega 3s with green vegetables, linseed, flax, canola and EVOO oils, fish, grass-fed meat dairy and eggs. According to David Servan-Schrieber, MD, PHD, in his book Anti Cancer, "The imbalance between omega-6 and omega-3 fatty acids in our diets increases inflammation, coagulation, and the growth of adipose and cancer cells." Also from his book, foods that specifically inhibit cancer cell growth the most in colon cancer are garlic, leeks, scallons, brussels sprouts, savoy cabbage, cabbage, beets, spinach, kale, asparagus and cauliflower. I hate to break the news but we are all high risk for colo-rectal cancers.
 
Hi..for those of you, who have found entyvio is working. How did you notice? I am due my third infusion on Monday but have had no difference in symptoms so far. I have constant right side burning pain and running to the toilet with huge belly button cramps. I feel things are getting slightly worse rather than better and can't understand how one more infusion would make a marked difference. My consultant was giving entyvio the 12 weeks to work and if it doesn't, I've to have another resection. The 12 weeks is up on 9th of may. But after Monday my next infusion would be in June. It's really confusing.
 
Gemmcn said:
Hi..for those of you, who have found entyvio is working. How did you notice? I am due my third infusion on Monday but have had no difference in symptoms so far. I have constant right side burning pain and running to the toilet with huge belly button cramps. I feel things are getting slightly worse rather than better and can't understand how one more infusion would make a marked difference. My consultant was giving entyvio the 12 weeks to work and if it doesn't, I've to have another resection. The 12 weeks is up on 9th of may. But after Monday my next infusion would be in June. It's really confusing.
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My blood work C-reactive showed and also because I had to have a MRI and CAT scan recently and it showed reduced inflammation. I didn't feel it though just tests revealed it.
 
GI Jane said:
My blood work C-reactive showed and also because I had to have a MRI and CAT scan recently and it showed reduced inflammation. I didn't feel it though just tests revealed it.
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This disease is bizarre!! I am glad it has shown to be working for you expect I just don't understand how it wouldn't make you feel better. It's always a wait and see thing isn't it lol
 
I think because of the diseased part acting up which they are removing next Friday. Have high hopes of feeling better after that for sure.
 
GI Jane said:
I think because of the diseased part acting up which they are removing next Friday. Have high hopes of feeling better after that for sure.[E]
I take it entyvio doesn't completely heal it then? And that's why they are giving you a resection? Is it so they know it's working on you for maintenance for after your op?
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No the damaged part is permanent they told me. They said when that's removed then I have a good chance of being in remission with entyvio as my maintenance drug for life. Since the markers are so positive they have a good hope for me so yea hoping they are right.
 
GI Jane said:
No the damaged part is permanent they told me. They said when that's removed then I have a good chance of being in remission with entyvio as my maintenance drug for life. Since the markers are so positive they have a good hope for me so yea hoping they are right.
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ah I understand. Thanks for answering my questions and best wishes for your health:)
 
Glad I found this group.
I am set to srat on Entyvio as soon as they can find a spot for me at the lcoal hospital to srat me on the infusion after easter.

My journey with Crohn's must have srated in right after 2000. My first flare happened while I was in Iraq working for the WFP in 2003. Tne had a few problems with a day or two of serious stumach pains...but I was working in africa, middle east and asia so I thought it was just the heat and the food.

Then in Thailand 2008 I got hit hard, and had a en mergency resection of my small bowel...followed by anoteher a week later as the stitching broke, and leaked...so I got peritonitis on top of having top do the surgery again...

Then home to Norway, still no official diagnose, so I went unmedicated for another year,
this went okay, I started working in a kinder garten, and bang...another flare...3 more surgeries later I have tried

Imurel - stopped as it allmost killed my liver...
Methroexate pills no effect
Humira - no effect, and devolopped needle anxiety
Methreaxe injections - no effect
Now on Prendisolone and Questran
Entyvio to start after easter.
 
Norseman said:
Glad I found this group.
I am set to srat on Entyvio as soon as they can find a spot for me at the lcoal hospital to srat me on the infusion after easter.

My journey with Crohn's must have srated in right after 2000. My first flare happened while I was in Iraq working for the WFP in 2003. Tne had a few problems with a day or two of serious stumach pains...but I was working in africa, middle east and asia so I thought it was just the heat and the food.

Then in Thailand 2008 I got hit hard, and had a en mergency resection of my small bowel...followed by anoteher a week later as the stitching broke, and leaked...so I got peritonitis on top of having top do the surgery again...

Then home to Norway, still no official diagnose, so I went unmedicated for another year,
this went okay, I started working in a kinder garten, and bang...another flare...3 more surgeries later I have tried

Imurel - stopped as it allmost killed my liver...
Methroexate pills no effect
Humira - no effect, and devolopped needle anxiety
Methreaxe injections - no effect
Now on Prendisolone and Questran
Entyvio to start after easter.
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I am sorry for all you have been through. I hope the Entyvio puts you in remission.
 
ronroush7 said:
Has anyone else had trouble with their insurance approving Entyvio?
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I had trouble getting my insurance to pay for the first 2 infusions. after they told us in a letter the Entyvio would be approved. Turned out there was a miscommunication between the Dr's office and the insurance company. The Entyvio had to be ordered through the specialty pharmacy. The insurance company agreed to cover the first two infusions but all other infusions must come through the specialty pharmacy.

I don't think this is the same as you are going through, Ron. I hope it gets sorted out for you.
 
ronroush7 said:
Has anyone else had trouble with their insurance approving Entyvio?
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In my country the doctors make such desitions. During my last routine checkup the surgeon conlcuded that my current, as well as my past treatments had not effect, so he wanted to try Entyvio. He then left the room to consult with his boss, came back two minutes later, and told me it had been approved and that I will start after easter. Won't cost me a dime, beyond my regular income tax...
 
D-day for Entyvio treatment now set to May 11th. Have to go in the day before for blood tests as I am supposed to be in the infusion room by 0800, so no time to process the blood before then...so ther egoes two mornings, hope this works :)
 
ronroush7 said:
Has anyone else had trouble with their insurance approving Entyvio?
Click to expand...

Have you tried applying for help with cost of Enyvio directly with the company?

Go to their website and look at the Entyvio Connect Co-Pay Assistance Program.

With their help and my insurance I am only paying $5.00 for the medicine and nothing else. Without their help I would not be able to afford this.
 
Ron, I would call Entyvio Connect and get the ball rolling before your first infusion. Since you have been approved they will set you up. 1-855-368-9846
 
They did a bunch on me and more when I get my infusion they said. I hope they hurry so I can start! I feel rotten. And I want my Med!!! Do I sound like a pouty kid🤞🏻😥?
 
Juulez said:
They did a bunch on me and more when I get my infusion they said. I hope they hurry so I can start! I feel rotten. And I want my Med!!! Do I sound like a pouty kid🤞🏻😥?
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I am currently on Humira. It is not doing anything but I am supposed to keep doing it until they start the Entyvio. Waiting to hear when a nurse is coming to administer it. No. You don't sound like a pouty kid. I know how you feel.
 
I understand for sure not pouty. I'm so excited about this med and my gastro doctor is too. She told me yesterday that if it wasn't for this there was a 90% chance of the same surgery in the near future so now it could be a really long remission she believes. :)
 
Praying for no surgery needing. If you do invest some time in looking for seamless or silk clothes. I'm so skin sensitive it's crazy.
 
There was a doctor from the place that is shipping the Entyvio who said hopefully you will be able to go off some of your medicines after starting Entyvio. Has anyone been able to go off some meds after starting Entyvio?
 
Just had my treatment yesterday. Beside my pain meds and spasticity and sleep meds this is all I'm on now, no other Crohn's meds in other words.....yep out of it.
 
I have had about 2 weeks of normal bowel movements. I have been getting better in my Crohn's symptoms while on Entyvio. It's been nice.
 
Um...hi. I am 31, female. I went undiagnosed my entire life because I was an atypical presenter. They finally figured out the problem in November

I was never put on any other med- I haven't failed a TNF-alpha...but I went straight from 9 mg daily of budesonide to a bag of vedolizumab every two months solely. It seems to be working, but I've had some interesting reactions.

Every infusion day I'm exhausted, for one.

I lost ALL of my hair, for two.

My skin has decided now is a perfect time to freak-the-f***-out, for three.

I seem to be asymptomatic otherwise..which makes me think it's working...or...I don't need it in the first place? I don't know. My doc is a fantastic one though, she's one of the leading drs in the field- studied directly under Dr. Hanauer...so...I mean...I have to trust her, right? :)

Anyway- I'm glad there's a support group for this medication specifically.

Anyone else had any of the same side-effects I have, by chance?
 
I moved to Florida. Now have best doctor here got referred by old doc h. He has more of a personality too. But yes yay chi town!!!!!!
 
I have some thinning of my hair now. My doctor said it more from not being able to absorb the correct nutrients then from the medication but now you make me wonder. Thinking of cutting my hair short so it wont be so noticeable if this trends continues. There is a hair skin and nails vitamin that helps some. Doctor also wants me on a good vitamin but they seem to upset my stomach so I like to divide it into one time the calcium the other meal vitamin c and so on and ya I like the gummies so it feels like a treat. I don't seem to get tired from the infusions but we have a great window to look out of and view of the Space Needle so it keeps my interest. When I was in a closed up room it just brings on tiredness for me. Try bring a movie on a tablet or something exciting like that to keep you awake and interested. Take care.
 

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