FLU TIME AGAIN, so let’s get it on with talking about the FLU SHOT.
I did not participate in this survey, but had I participated I would fall in with the 36% of UC’ers who do not get the flu shot. I used to ask my GI doctor(s) when my symptoms were out of control several years ago about should I or shouldn’t I get the flu shot, but I honestly can’t remember what they told me.
Pretty interesting that only 7% of you who participated feel that the FLU shot has an effect on your UC symptoms. And 40% stated “No” to that very same question.
Also, it’s pretty interesting to see that although 61% of your GI doctors/treating physicians recommend that you get the flu shot, only 43% of of you actually follow up and follow those recommendations.
One of the fellow UC’ers who participated in the survey sent over a very interesting link, I’m guessing most of you don’t read the Lancet ( a medical journal scientific type of deal), but some of you very well may be fascinated by some of the info in there. Either way, this UC’er (also a doctor) passed on this link, the text is titled: “Vaccination and Autoimmune Disease, What is the Evidence?” – http://image.thelancet.com/extras/02art9340web.pdf
Pictures pictures pictures.
Here is a quick gallery of all of the participants who submitted photos. about 45 people out of 560..Not too bad…but what do the rest of you look like?
(If you’d like to participate in future survey’s you MUST join the FREE ANG (active newsletter group) to get my emails with the links to participate.)
Flu Shot Survey – With Relation to Ulcerative Colitis
Question 1: (560 Responses)
BEFORE my diagnosis of UC I…
- 52% – NEVER got the flu shot
- 26% – SOMETIMES got the flu shot
- 22% – ALWAYS got the flu shot
- 1% – I have no idea
Question 2: (560 Responses)
AFTER my diagnosis of UC I…
- 43% – ALWAYS get the flu shot
- 36% – NEVER get the flu shot
- 22% – SOMETIMES get the flu shot
- 2% – I have no idea
Question 3: (560 Responses)
Do you think the flu shot has an effect on your UC symptoms?
- 40% – No
- 28% – Not Sure
- 25% – I don’t get the flu shot
- 7% – Yes
Question 4: (560 Responses)
Does your doctor or treating physician recommend you get the flu shot?
- 61% – Yes
- 30% – I’ve never asked/don’t know
- 9% – No
The final question to the survey like most past surveys, was a place for participants to share any thoughts and/or comments on the topic. And, 118 of you included some comments. Here they are:
- I have to get the preservative free flu shot as I am allergic.
- I got my flu shot in early October and was told that I could not get the “live” virus – that I had to get the other type (which was what they were giving out here at school where I teach). My UC is not under control at this time and has not been since diagnosed back in June so it is hard to tell whether or not the flu shot had any effect on my symptoms. Right now I feel like I have so much fatigue (I have developed anemia as well) that the flu wouldn’t be much worse. LOL
- what is the purpose of this survey ? . will you be informing the contributors of your findings and the impact of the flu shot on UCrs. (YES, just like all other surveys we’ve done in the past…Adam:)
- I got the flu shot right after a flare-up. I was a bit leary about getting it so soon after a flare…thankfully it didn’t cause any problems.
- I think getting the Flu shot is very important especially to people with UC and other immune system problems. Getting the Flu while having a flare-up leaves you weak and in a lot of pain. If in a remission, it can lower your immune system leaving you open to all kinds of problems. If you are working with Remicade, getting the Flu can leave you open to infections and lots of down time feeling weak and tired. I highly recommend getting a Flu shot.
- I think flu shots are a big money maker for all involved, I’m 50 and have never had a flu shot in my life. I have not had any serious bouts with the flu, I think they weaken your defences against germs.
- I was already having a flare up fro about a month. Yet I decided to get a flu shot because I was concerned and loosing weight. After getting the shot my symptoms starting getting worse. Still not sure if the shot was the cause. However I never have had such pain and discomfort. Though this is only the second flare up I have had with my UC. All I know is I’ve changed my diet and bed rest for almost 2 months. just starting to get better now in month 3 ???I lost almost 40 pounds in that time, now have gained back about 15 pounds.No gluten, no dairy and getting better.This was the hardest time ever with my UC in the 2 years I’ve had this.
- I believe in helping the immune system through organic food, probiotics, low stress and positive thinking.
- There’s nothing worse than getting a flu bug that causes GI symptoms. It can trigger a flare-up. So, I get a flu shot every year. Last year, even though I got the shot, I cam down with a very, very bad case of the flu. For two days, I couldn’t move and slept most of the time. My fever was high. And I had a weird, ugly cough and congestion. I couldn’t eat. I took Advil every 4 hours. I believe to this day, that all that Advil flared up my colitis.
- Because i’m on remacade i was scared as hell to get the flu shot but there was no side effects and i didnt get sick. So doc. was right get your flu shot and dont get sick ! Cheers
- I read a lot of online stuff and I don’t believe everything I read but it seems to be working for most people and their strongly recommending I do get it but my doctor says no and didn’t give me a specific reason why
- I have had UC for almost a year now. I have lost over 25lbs. I am trying to gain it back, it is not working yet. I am on Probiotics and L-Glutamide and vitamins. I do not trust that a flu shot will or will not do more harm than good. I am trying really hard to maintain my energy and keep going. If anyone knows a way for me to gain some weight back please let me know. Thank you. My name is Dianne J.
- I don’t take any vaccines or flu shots, preferring to take natural food supplements.
- That flu shot messes with your immune system and UC already does that…no thank you!! Do not need anymore compromises!
- I was in a flare before getting the flu shot last year and my shot was delayed because of the steroid treatment. I had to wait about a month before I was cleared by the doctor and the pharmacist to get the flu shot. I do not recall the shot flaring up my symptoms.
- Always have a cold after flu shot but never any problems with UC
- My getting or not getting a flu shot has nothing to do with having UC. I just don’t like needles and the arm soreness after a flu shot.
- My job puts me in contact with many different people all day long. Last year was particularly bad for the flu in my area, but I remained healthy all winter long. I did have some extreme tiredness and a low-grade fever for the first week after getting the shot for the first time last year. This year, I didn’t experience those effects.
- I have gotten the flu shot years ago before being diagnosed with UC. I was always ill more with the flu after I got it than the years I did not. I am always afraid of feeling worse, so I don’t get it now.
- I got it about 1 year before my symtoms started and I know there´s been studies about the flu shot causing UC/Chrohns. I think the conclusion was that it didn´t have effect on this.
- I have had very bad local skin reactions to the flu shot so I no longer get them.
- Flu vaccine is “dead virus”, presents no problem unless UC patient is in middle of flare and is very sick with high fever. Treated at Cleveland Clinic, currently in remission, flu vaccine was recommended. UC patients on TNF’s can’t take live vaccines, ie. no Zostavax while on Remicade for me.
- In my opinion the flu shot I got this year (I’m in Australia) didn’t in itself create a flare, but I feel it did nothing to prevent me being not being unwell for the season. Post-shot I had one cold or infection after another – literally, every 2 weeks for the whole of Winter. My last infection resulted in me being prescribed antibiotics and then I had a significant flare.
- I am waiting on blood results to start Simponi. Since Simponi lowers immunity, a flu shot is a good idea; however, a Simponi “user” should not be given any live vaccines. I am not familiar with flu vaccines since I always refused them, but I do know the nasal spray contains live viruses. The shot is probably okay, but this will be the doctor’s call — maybe I will go along with it.
- I was just diagnosed with UC August 2013. I have been in a flare so I can’t say if the flu shot had any impact on my UC.
- I have suspected that a measles vaccination contributed to my UC. I discovered that vaccines stimulate your immune system by provoking an acute inflammatory response that can become chronic in some people. For this reason I regard any type of vaccine as a threat to my immune system and do not travel to countries that require a vaccination.
- I went to do the medical centre to do a blood test and when mentioning my UC the nurse offered me the flue shot, and I thought why not as I just had had a cold for 3 weeks and really didn’t fancy getting ill again. I did have a fever the entire night, but last time I had a vaccine-shot (can’t remember what for)the same thing happened, and that was years ago before I even had UC. I just recently stopped having a flare up and nothing has changed since I got the vaccine about 6 days ago.
- I am currently taking Remecon a medication that lowers your immune system, so therefore I get aflu shot at the request of my Doctor. I have been getting flu shots for the past thirty years.
- I think our GIs strongly encourage the flu shot because our immune systems are already compromised. However, i have rarely ever had the shot in my lifetime(I’m 24) and I also rarely get severely sick besides my usual uc symptoms. Knock on wood. I blame my overactive immune system on this one.
- i got the flu shot and it gave me a bad shoulder ache and took aleive and went into a bad flare up a day later, was it shot, aleive or just random flare up?
- It was recommended to get flu shot due to immune suppressant drugs reducing resistance to influenza type viruses. Just no live vaccines.
- If taking Remicade get your flue shot about two weeks after and infusion….Just makes sense.
- I dont know any healthy people who have had a good experience with a flu shot so really think itd be no help to me, a less healthy human.
- I would like to know what the majority opinion is from medical standpoint. My previous Dr believed it could cause issues with my UC. Have new Dr within past year and have not followed up with him yet. (I hope you give a good read to the responses here, might make your head spin since many different perspectives, but maybe as well this will help you make up your mind which side of the fence you want to be on-Adam)
- I am Leary of theflu shot, I know so many people who get really sick right after one. I am on Remicade so they recommended that I get one. At this present moment Iam battling a cold which has gone tomy lungs. I still don’t regret not getting theflu shot.
- I got the flu shot last week. I started taking Humira a few weeks ago, and they recommended getting the flu shot due to decreased immunity.
- I also have asthma so am advised to get the flu shot. I’ve been having it for over 10 years now but didn’t for the first 15 years or so. I haven’t had any adverse affects from it.
- I got the flu shot last year and went into a flair the following week.Not sure it was the shot but now I’m afraid to get it this year.
- I haven’t gotten the flu since i started taking the shot. The shot itself does not bother my UC but the flu sure did when i used to get it. (Keep up the flu free ride:)) – Adam)
- This is only my second year of getting the flu jab.
- If you read Cochrane report, an independent review, flu shots are not effective for most people. Why take the risk, when so little benefit?
- Whether a flu shot causes a flare is definitely hard to predict. After I received a flu shot in September 2012, I started to have severe UC symptoms. Couldn’t really correlate that the shot was the instigator. Yet year later, September 2013, had flu shot and no major reaction only minor symptoms month or 2 month after….flu shot or other affect?Maybe another survey question: Is UC ‘seasonal’? Do UCers see higher flare occurrence in winter vs. summer, etc. (Great Questions! I personaly have had tuffer times in the October and November months in the past, this year things have been fine, but I think you have a great idea/question. Many many UC’ers have reported to me over the years that symptoms often seem to be “bad” at certain times of the year. – Adam )
- I was also advised to get a pneumovax shot when first being prescribed methotrexate
- It makes me sicker so I stopped getting it. Also I’m om remicade
- I got the flu shot once. I had a bad reaction. The site of the injection swelled up like a cut in half tennis ball, almost, and I had to put an ice pack on it for a week to relieve the itching. Never again.
- I think, that any vaccinations are a bit dengerous, especially for people diagnosed with autoimune desease… (OK, but what’s your reasoning? a hunch, or do you know something we all should know? :)
- I don’t understand how flu shots (don’t) work. There doesn’t seem to be any less flu going around despite the millions of people lining up for them. There also doesn’t seem to be any clear science showing the flu shots’ efficacy.If we UCers have an immune system gone awry, how can adding a immune affecting drug with questionabe ingredients support our bodies?I have an open mind and I’d appreciate it if someone would explain this flu shot phenomenon to me.In my opinion the money would be better spent getting vitamin D levels optimized,
- I would like to know what do GI doctors say about flu shuts for UC patients.
- The flu shot has had no effect on my UC at all. I think that getting the flu would have a much bigger impact on UC than the flu shot. Many people will say they missed work yesterday, they had a ‘touch of the flu’. What they had was a garden variety virus. The real flu will knock you on your ass for a week or more. My 2 cents of advice, get the flu shot.
- I’m of the opinion that getting the actual flu would be much worse for my colitis than getting the flu shot and enduring mild cold symptoms and their possible effect on my colitis.
- I’ve been diagnose with UC since 2008. I’m on remicade now, and I have been doing very good and I have never had the flu, or flu shot.
- I am not a proponent of vaccinations. I only received it when I had to and I will not get it again.
- I take Humira and there is a lot of controversy about how safe the flu shot is when taking an immunosuppressant. Even before I was diagnosed with UC, I didnt get the flu shot. And I’ve never had the flu.
- I have asthma too and with the suppressed immune system my doctors have all recommended it.
- Treated at Cleveland Clinic, uc now in remission but for how long? Flu shot was recommend for me during my visit there. (I hope it goes for a VERY LONG TIME:) Congrats to you – Adam)
- I just my flu shot last week and no signs of a flare as of yet. (Yippies to you:)
- I only get the flu shot now because my doctor put me on Azasan, an immunosuppressant, to treat my UC. So far, I haven’t noticed that the flu shot has had any effect on the UC itself (but the Azasan has worked wonders).
- I believe that the flu shot will worsen my UC symptoms and put me into a flare. I have heard many horror stories about the flu shot. Most stories I’ve heard include the individual getting sick within a few days after they received the shot.
- I didn’t experience any outward negative effects from the flu shot with regard to my UC; however,after doing some research I’ve decided at this time the flu vaccine isn’t for me.
- I was just diagnosed last summer. I’ve always gotten the flu shot. It didn’t even occur to me to question whether I should or shouldn’t this year. Happy to say it had no affect on my UC or my current remission.
- I do find this interesting as I received my flu shot and shortly after started bleeding. I have no other flare symptoms except bleeding. Is this a coincidence or caused by the flu shot. Sure would be nice if the medical community would be able to give some definitive information on something, anything, colitis related!
- Everytime I have got the flu shot (twice), I ended up with the flu. Even with my weakened immune system, I still take the risk and don’t get it.
- In one of those dark times searching for answers to this nasty disease I ran across research about vaccines and autoimmune diseases. To summarize… Our vaccines were tainted with viruses. They were allowed to remain in the vaccine due to prevention outweighed the possibility of what the virus could do. More research was done to prove they needed removed. So in the early 1970’s viruses were removed.
- I cannot say for sure that there is a common link but I am starting to think so. The fall is when I experience a lot of stress at work, at the same time the last 2 years I have gotten the flu shots. The last 2 years I have had flare ups in the fall. Last year was really bad to the point that I went to Mayo Clinic to get it under control. (So maybe there is something to the seasonal thing after all, or at least for some sounds like – Adam)
- Always had them except this year because I was on a drug trial. Usually still end up with a cold or sore throat sometime, but haven’t had the flu.
- Am currently in a flare, first time while questioning do I get the flu jab? Surely getting the flu is worse than the jab??? :-/ (What up with this jab talk? You guys getting punched in the face somewhere when you get the shot or something? I thought boxers were the only ones throwing jabs? Is this na Aussie term or British slang? – :)) Adam)
- I got my flu shot this year and was sick as a dog for 24 hours after. Cramping and diarrhea
- I’ve never had any adverse reaction to the flu shot.
- I am on Humira, So they recommended both the flu and Pneumonia shot. This is my first year with UC Pancolitis. It did not have any effect on me.
- I had never had a reaction to a flu shot until this year. I am currently flaring, and my symptoms got much worse the day I received the shot. I will definately think twice before getting one next year.
- I got the H1N1 shot in January of 2010. A week after I got the shot (or maybe it was even a couple days) I became extremely sick- vomiting, diarrhea, chills, fever- and ended up in the hospital where I was diagnosed with UC. I truly believe that shot brought the onset of my UC on.
- I have found it helpful to have the flu shot. The last thing I need is a bout of the flue goofing up my digestion once I have my UC under control. I have had UC for almost 12 years now and I have never had any adverse effects from the flue shot but many from getting the flu. I have been told by my doctor that now that I am on remicade it is important to get the shot because of a decreased immune response. I am also a teacher and am exposed to germs and viruses on a daily basis so I think it helps.
- The standard flu shot was not a problem; the Super flu shot made me ill, setting off a mild flare.
- It was only a year and a half ago that I got my diagnosis at age 68 and it’s never occurred to me that there could be a correlation between UC symptoms and a flu shot. I’ve been getting flu shots regularly since 1991. Somehow this improved my annual bouts with bronchitis and I haven’t had the flu and bronchitis only twice. My case of UC is categorized as mild to moderate. I take Lialda and have gradually decreased the dosage from four a day to two a day. My family physician recommends the flu shot and I didn’t consult my colorectal doctor about it. It will be interesting to see what other people think of this topic.
- I have been getting my flu shot since before I was diagnosed with U/C. I don’t recall that it has ever had any effect on my condition. My personal physician, who knows I have U/C, has never told me NOT to take it. Besides, the shot is administered at my local hospital where I am treated for U/C, so I am assuming (?) my specialist will know I get the flu shot, which is administered as a matter of course for anyone aged 55 and over.
- to be clear on Q5, my physician leaves it up to me. so “no,” but he does ask…I have not had a flu shot in about ten years, since I felt it once or twice seemed to make a flare-up-in-progress a lot worse and then required me to go back on prednisone.I had flu-like symptoms one of the years I did not get the shot- and it was bad for a day or two- but on balance it seems worth it not to have created flu-like symptoms or diarrhea as a result of the shot for the other 9 years.
- I was reluctant after I was first diagnosed with UC but Dr. said it was OK. I get the flu shot every year as I have in the past and there is no adverse effect that I know of. I have very bad joint pain but do not know if the flu shot is making it worse.
- Im going onto 6mp. Then i probably am advised to take flu shots.
- I get conflicting advice about the flu shots. Most docs say that the virus is “dead” so it shouldn’t give me problems, but last year my UC became unbearable and I was violently ill after receiving my annual flu shot. As of now, I just can’t bring myself to go through that experience again.
- Two years ago I was on infliximab infusions, I got the flu shot early October, within a day I was extremely unwell this continued for weeks and after the next infusion in December I was in my hands and knees, I was so ill, I had to stop infliximab and told it was a severe reaction, I am convinced the flu shot did this to me. I have resumed infliximab infusions since late last year with no flu shots and its working so far with steroids beforehand, if it fails to work I am facing surgery, so I take nothing in case it triggers reactions especially not the flu injection.
- Usually feel a little logy for a day or so but no UC flairs.Typically some pain at the injection site for a day.Was always told not to get the “active” type nasal flu vaccine if you have an auto-immune disorder. Stick with an “inactive” type.
- I have lived with UC (pancolitis) for 15 years and I get the flu shot, although I hold my breath every time. While I have never experienced a flare following a flu shot, with this disease, one never knows. In the long run however, trying to deal with any other illness including the flu makes dealing with the UC even harder, so I faithfully get a flu shot.
- I have not not noticed any change in symptoms as a result of having a flu shot
- I am on Remicade and my doctors have told me that it is not good for me to get the flu shot because it is a live vaccine and with my immune system already compromised, i could get very ill.
- I rarely get sick with coughs, colds or flu. If I do succumb I usually recover very quickly. I also do not use over the counter meds! They do not really help you.
- Even before UC, the few times I did receive the flu shot, I suffered a terrible reaction which, in my opinion, was nearly as bad as having the actual flu. The same thing happened when I had a tetanus vaccine and (two of three – I refused the third) Hepatitis vaccinations, which were required for my job. At this point, I have such distrust for Big Pharm, the FDA and “generally accepted medical practices” that I’d sooner fly to the moon than accept a vaccination.
- I would really like to get the flu shot, but I am apprehensive about whether or not it who trigger a flare.
- I got the flu shot last year for the very first time and was not well for quite a while. I have UC for 9 years.
- Ironically, I’ve gotten the flu less often since I’ve been diagnosed with colitis and stopped taking flu shots (at my gastroenterologist’s urging).
- I always seem to get the flu or pneumonia (this year) about three weeks after my shot. My Dr says it’s a coincidence since it’s not a live virus. I am not convinced as of yet.
- No sdvice from my gastro doctor only from my Primary to get the flu shot.I believe in preventative medicine in all forms!
- I got a flu shot last week as I’m going back t the uk in 3 weeks and always end up getting a cold.
- It’s never had any adverse effects on me or the UC.
- I was required to get the flu shot as well as a host of other vaccines prior to beginning Humira.
- As I stated above, I know believe the flu shot, at least for me, has caused the UC to flare or resurface.I will not be getting any more flu shots in the future, needless to say!Bev :) – (What up BEV! thanks for being the inspiration for this survey! some darn interesting results – Adam:)
- I believe the flu shot is bad for you and unnatural and we shouldn’t get it.
- I have not taken the flu shot this year. I have been hurting so badly that I have delayed getting the shot. Each year I tend to feel achy and terrible for a week after taking the shot. I don’t deal with it very well. We don’t seem to have a terrible outbreak this year and I might take my chances. I would like to hear from other UC patients regarding the shot..
- I’ve been diagnosed with UC and Crohn’s.
- The Nobel Prize in Medicine is waiting for the definitive answer to whether the flu antigens can flare IBD. You might get it??MD. Los Angeles. (I think the prize should be some 5 ply toilet paper for all of us doc:) – Adam)
- I do not trust the medical community or the government enough to allow any injection especially if they promote it. People are so trusting. I am still flabbergasted by the whole shingles thing. WTF?
- Because Im on remicade I get the flu shot, I have not noticed any side effects at all, and I still catch the flu on occasion but not as bad and not for too long.
- I was never advised and never asked about a flu shot before I started the latest medication two weeks ago.
- I’m in the military, and have had UC for 11 years…..I have never had any problems with the flu shot or nasal spray.
- I was hospitalized due to a bad flare about a month ago. During that time I received my flu shot and the nurse said that it’s a requirement all patients receive a flu shot. After the shot, I did not notice anything different with my flare.
- i am 68 years old and was diagnosed with UC 3 years ago. Last year I got my first flu shot ever. It had no effect on my UC.
- I never thought about not getting the flu shot bc of my UC. As a teacher and a new mom, it was recommended but never thought to ask my GI.
- First time I got flu shot I actually got the flu. So going forward I do not receive shot anymore and guess what no flu.
- Besides the flu shot my doctor recommends the Pneumovax to decrease chances of getting respiratory illness.I was told only to get the Flu vaccine and not the nasal mist with the “live” bacteria.I am anxious with my compromised immune system that catching colds and viruses are more likely for me, but I do not seem to get sick more often than other people I know.
- I’m not sure whether or not the flu shot will affect my UC. However, I am certain that there are things in the flu shot that I don’t want in my system. I am not a person who gets colds and am a religious hand washer. I also work in a public school system so my immune system is constantly challenged. I view it as going to the gym, getting a good work out in, making me stronger and healthier.I may be very wrong, but so far so good.
- I worked in home health care for years prior to my diagnosis and it was always recommended we get a flu shot and the company paid for it. My GI recommends now I get the flu shot. I have no adverse affects and it seems to work, I haven’t had the flu in years. (knocks wood)
- Any immunosuppresd patient has an inherent duty to themselves, families and co-workers to receive any way to reduce the risk of contracting the flu.
- For the last two years I’ve noticed that my flare got a little better immediately after my flu shot. Not long lasting relief, but a few day’s worth.
- The doctor advised me to get the flu shot seeing I have a chronic illness plus I am on Humira And my resistance is lower than the average person..
- I also have Multiple Sclerosis. My doctors always promote the flu shot…but I don’t budge.
- I have just received a letter from my GI Doc advising me to get Flu shot. Really not sure what to do , I could do with some advise .
- I never noticed the flu shot having any noticeable effect on my UC. However, I felt awful, with flu like symptoms last year after getting the “preservative free” shot. This year I got the intradermal, which was just as painful as any other shot. I did apply an ice pack to the area, which provided relief and supposedly dampens your immune reaction. that was over a month ago. No problems, UC remains the same.
Thank you to all 560 participants who added ideas, comments, and insight into the annual question that all UC’ers face with regards to getting the flu shot. If you’re wondering, I myself am a MAJOR whimp when it comes to shots. I haven’t had any shots for over a year, and I’m hoping to keep it that way. And I know there’s some new slick ways of getting the flu shot in this new age of medicine, but pretty sure I’m going to hold off on getting the flu shot anytime soon. But that said, I’m elated to know that so many people who are using the flu shot are having success with fighting the flu and not having suspected/related UC issues. And to Bev( who was the inspiration for this survey), what ya thinking after reading all this? You still staying clear of flu shots moving forward? Best to you all, no matter what your thoughts on flu shots. And for anyone who is down in the dumpster right now with flared up, out of control UC symptoms that seem like they will never end. Guess what? Two things you need to ALWAYS remember.
- You’re not alone
- Symptoms don’t last forever
Let’s all have a great rest of 2013. And do something nice:
- Volunteer at the soup kitchen
- Open doors for strangers.
- Just do something nice.
- IT WILL MAKE YOUR COLITIS FEEL BETTER.
– Adam Scheuer