Ulcerative Colitis flare from flu shot?

Posted by dval @dval, Oct 9 8:28am

I’ve had UC for 3 years and finally reached remission for 13 months on Entyvio infusions. All other treatments had failed (oral and rectal mesalamine, oral and rectal budesonide. Oral prednisone was an effective bridge while transitioning to Entyvio. Remission started shortly after the loading doses. Also started a plant based diet at that time. I was doing great- even annual colonoscopy showed significant mucosal lining healing! Life was good and I was optimistic and hopeful for the first time in a long time (far cry from “fulminant” diagnosis in June 2019. Last Friday I had my annual flu shot and within 24 hours, I’m in a bloody flare after 13 months of remission!!! Nothing else has changed! GI doc has ordered blood and stool labs and I am devastated to be back in this all too familiar hell. I’ve read that there have been cases of people with UC flaring after getting a flu shot. I had never heard that and right now I just need some advice, support, hope…. Anyone ever had this experience??? Thanks!

@dval how devastating that you are experiencing a terrible flare after 13 months of remission. I can't imagine.
Has your GI specialist suggested continuing with Entyvio infusions?

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I called him immediately and he ordered blood and stool tests (C- reactive protein and cal protection) in addition to tests for CDiff, which I have never had and have no symptoms. No fever, no watery diarrhea. While waiting for the test results, he has prescribed Hemmorrex hydrocortisone suppositories for 7 days (twice a day). He said I can begin taking either oral budesonide or prednisone afterwards (just had a flu shot one week ago). He also proposed possibly increasing the frequency of the Entyvio to every 4 weeks instead of every 8. I’m apprehensive because I was terrified of biologics and their side effects and the Entyvio seems to have the widest safety margins. When I see him, I suppose we can discuss Humira or Remicade, but the Entyvio was working well with minimal side effects! I found cases on line of people with UC or Crohn’s flaring after having a flu shot. I have also been told it’s not “clinically relevant”. What does that mean??? If it has happened, it’s certainly relevant… I am just devastated to have gone this long with no symptoms!!! It was so bad last summer (2019) I was advised to see a colorectal surgeon. But the Entyvio worked!!! The plant based diet worked!! I felt good; my weight stabilized. The colonoscopy on July 6, 2020 showed significant improvement in the mucosal lining! The only variable is the flu shot, which I have had every year for decades. So, I am just trying to find out if others have had this experience. I strongly believe you must be your own advocate and I am. My GI doctor is brilliant and an expert in his field, and I am grateful to him for getting me to this point, but I also know my body and how I feel. Within 24 hours of the flu shot, there was blood and that old familiar intestinal pain. There has been blood every day 75% of the time I’m in the bathroom. I know all too well what a flare is and was naive enough or hopeful enough to think those days were over…. 😥

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@dval – What a terrible experience having a flare up happen overnight! It seems to me that you are one of very few with IBD that got a flare up right after the flushot. I'm aware that there is no proof found yet that there is a connection, but there are several reports describing a reaction that you had – happening out of the blue right after the flushot. It is also so important for you and others with IBD to get the flushot.
Your Gastroenterologist sounds great, having a plan for you immediately. If Entyvio has worked so well for you, but you hesitate to get more frequent infusions you could ask your doctor to go over risks and side effects again.
You are wise to see that you have to be your own health advocate. That is what I have done for years. I don't have UC or Crohns, but other autoimmune GI disease. I have seen connections in my illness but doctors claim there is no evidence. Many times, the evidence will come after a few years!
We would appreciate it very much if you can get back to us when you know more.

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@astaingegerdm

@dval – What a terrible experience having a flare up happen overnight! It seems to me that you are one of very few with IBD that got a flare up right after the flushot. I'm aware that there is no proof found yet that there is a connection, but there are several reports describing a reaction that you had – happening out of the blue right after the flushot. It is also so important for you and others with IBD to get the flushot.
Your Gastroenterologist sounds great, having a plan for you immediately. If Entyvio has worked so well for you, but you hesitate to get more frequent infusions you could ask your doctor to go over risks and side effects again.
You are wise to see that you have to be your own health advocate. That is what I have done for years. I don't have UC or Crohns, but other autoimmune GI disease. I have seen connections in my illness but doctors claim there is no evidence. Many times, the evidence will come after a few years!
We would appreciate it very much if you can get back to us when you know more.

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Thank you so much for the support and empathy! I’m still waiting for the test results. Our insurance covers Lab Corp only, so I have no choice…. In the meantime, this is Day 10 of bleeding. The reason I am hesitant about having the Entyvio infusions every 4 weeks instead of the usual every 8 weeks is because this flare occurred in Week 2 of the infusion cycle! My last infusion was September 15th and the flu shot was 2 weeks later. My understanding is if I was going to stop responding to the Entyvio, there would have been signs at the end of the cycle (week 6, 7 or 8) and I have never had that. I have always felt the same and was in full clinical remission. If I start an oral steroid in less than 4 days, it will diminish the benefit of the flu shot! This is all so complex and frustrating; having a chronic illness is!!! I was in excellent health before this hell, never smoked, drank or ate badly. There is no genetic component either. It has been difficult to say the least and I am blessed to have my husband of 43 years be my best friend and biggest support! Retirement is certainly not what we thought it would be…. With Covid-19 we’re all in an altered world. We are blessed to have wonderful, supportive family and friends and two amazing grandchildren, so I try to focus on the good stuff. I resent all the time and energy this disease has taken from me and there are days I am sad. People that get it understand and help too, so thank you!

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@dval – You probably still respond to Entyvio. The flu shot interrupted the healing. Our immune systems are very delicate. My illness just happened without anything like it in the past.
You are not alone having retirement plans go up in smoke. Same here.
Keep checking this site for others with IBD with whom you can exchange information.
Hope to hear from you soon!

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Thanks so much! Talked to GI doc again today and he has presented me with two options: take oral budesonide for a short period of time (bridge to the next Entyvio infusion) or change infusions to every 4 weeks. I have decided to take the budesonide (it has less side effects than prednisone) hopefully for just a week or two. I also hesitate to increase the Entyvio, as the side effects may become worse… We are still awaiting test results so I don’t have to decide today. My symptoms have not worsened and that’s a good thing. 🤞. May I ask what your health situation is? You seem to understand what I’m going through; it is much appreciated!

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@dval – Oral budesonide sounds like a good choice now.
My GI story is convoluted! In my 40s I was diagnosed with GERD and gallbladder dysfunction. After gallbladder was out symptoms continued- gravel in bile ducts, causing pancreatitis.
Twelve years ago I developed diarrhea suddenly- autoimmune colitis. Even after treatment I would get bloated, have pain and fatigue. It took years to get a diagnosis, because of different types of biopsy results. I was then treated with immunosuppressant for several months. I’m still fine except for extreme Brain fatigue. I compare it to burn out from the stress of continuous abdominal pain and discomfort.

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@astaingegerdm

@dval – Oral budesonide sounds like a good choice now.
My GI story is convoluted! In my 40s I was diagnosed with GERD and gallbladder dysfunction. After gallbladder was out symptoms continued- gravel in bile ducts, causing pancreatitis.
Twelve years ago I developed diarrhea suddenly- autoimmune colitis. Even after treatment I would get bloated, have pain and fatigue. It took years to get a diagnosis, because of different types of biopsy results. I was then treated with immunosuppressant for several months. I’m still fine except for extreme Brain fatigue. I compare it to burn out from the stress of continuous abdominal pain and discomfort.

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I’m so sorry and I understand. GI issues are so unpredictable and they take their toll emotionally too. I believe there is also a stigma attached, especially when you’re on a special diet. When I was at my worst (bloody diarrhea all day and night, too weak to leave the house) I researched constantly, read studies, prayed… I found much evidence on whole food plant based diets; one guy even claimed that it cured his Crohn’s disease. I was so desperate and miserable, I figured I had nothing to lose. I sent my husband to several grocery stores with lists and notes and started cooking and eating a plant based diet. Friends and family, while trying to understand this “vegan” like way of eating, were apprehensive, yet supportive, and we all learned a lot. There are so many recipe sites out there and I was determined to stop losing weight and to feel better! And it helped!! I started the new way of eating a couple weeks before the first Entyvio infusion and by the end of the loading dose period, I had stopped bleeding. Three months later my weight stabilized and for the next 10 months I felt better than I had in years. I do have extreme fatigue after an infusion and this annoying respiratory mucus, but I can live with these side effects. I was thrilled to be able to leave the house without fear. Of course, this covid world has changed all that, but I was in remission and I felt healthy. I think that’s why I am so devastated to be back in a flare. I am fortunate, though, to have a brilliant and compassionate GI doc that is always reachable, compassionate and treats the patients, not the disease state. Sometimes I meet other patients in the infusion center that are on Entyvio and we talk about our conditions and how lucky we are to have our doctor. Yes, these autoimmune diseases come out of nowhere and knock you on your ass and people just don’t get it! So again, I thank you for your comments, support and for sharing. I wish you the best in your battle and more good days than bad ones. These are things we have to live with and find ways of doing so….

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So sorry to hear about your reaction to the flu shot. I had a similar reaction this year. I have Crohn's disease and have avoided flu shots for a long time because of a flare/reaction about ten years ago. This year at my GP's insistence, I got the shot. Within 24 hours, I was a wreck, and still am. But of course the doctor said it couldn't possibly be the flu shot. It must be my imagination !
Hang in there, I hope things turn around for you soon.

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@jcarndt

So sorry to hear about your reaction to the flu shot. I had a similar reaction this year. I have Crohn's disease and have avoided flu shots for a long time because of a flare/reaction about ten years ago. This year at my GP's insistence, I got the shot. Within 24 hours, I was a wreck, and still am. But of course the doctor said it couldn't possibly be the flu shot. It must be my imagination !
Hang in there, I hope things turn around for you soon.

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I never would have thought to put the two together. It does make sense though, because I have Crohn’s Ilium and after the shot this year it caused me to go out of remission. I’m now dealing with severe diarrhea and going 6-8 times a day.

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@kaforester3

I never would have thought to put the two together. It does make sense though, because I have Crohn’s Ilium and after the shot this year it caused me to go out of remission. I’m now dealing with severe diarrhea and going 6-8 times a day.

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I am so sorry! Today is two weeks and one day since the flu shot and the bloody diarrhea continues and is more frequent. I am taking oral budesonide hoping to make it to the next Entyvio infusion without having to increase the frequency of that. Thirteen months of remission and suddenly here we are! The medical journals do not clinically support this (not clinically significant) but they state environmental factors can cause a flare. It is the only variable and I know it was the flu shot because the flare started in less than 24 hours and there have been no other changes. I too was hesitant to get the flu shot, but with Covid-19, you’re afraid to leave the house these days. I understand and empathize with the fear and frustration you’re both having and I am so sorry! I hope we all get through these flares and back on track quickly…. Thanks for sharing and good luck!

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Well, I can guarantee that this will be my last flu shot…..ever.

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If you don't tolerate flu shots there is an alternative- Tamiflu medication at first sign of suspected flu. Please check with your doctor if this would be a good plan.

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@kaforester3

I never would have thought to put the two together. It does make sense though, because I have Crohn’s Ilium and after the shot this year it caused me to go out of remission. I’m now dealing with severe diarrhea and going 6-8 times a day.

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Hi, just checking to see how you're doing. This is Day 19 of my "flu shot flare" and things just started to improve because of the recently prescribed prednisone. The steroid suppositories (7 days) did not stop the bleeding, nor did the oral budesonide, so GI doc brought in the big guns, but only for a short period of time, with tapering to begin within 7 days. Also wanted to let you know that he said the flare could absolutely have been brought on by the flu shot BUT only because there must have been some inflammation or immune activity going on at the time I got the shot. Evidently the immune system can only handle so many immune responses at a time. He also ordered a blood test that will check the trough level of the Entyvio I've been on for 15 months and see if there are antibodies. So, we'll see… IBD is a difficult and complex condition and challenging to treat and control. I hope you're feeling better and back in remission or on the way back to remission!!

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