Can Rheumatoid Arthritis Patients Get a Flu Shot? 15 Facts on Vaccinations & Autoimmune Disease | Rheumatoid Arthritis Warrior

Can Rheumatoid Arthritis Patients Get a Flu Shot? 15 Facts on Vaccinations & Autoimmune Disease

I’ve had pneumonia, the flu, H1N1 virus, and Norovirus – it’s not a pretty picture with RA…

1. Do vaccines work as well in Rheumatoid Arthritis patients? New study shows vaccine protection may rapidly decline with anti-rheumatic drugs such as methotrexate and TNF inhibitors.

A new study published this week in Arthritis Research & Therapy showed that antibodies created by pneumococcal vaccination are reduced quickly in Rheumatoid Arthritis patients taking methotrexate or anti-TNF treatments. After a year and a half, antibody levels were close to where they were before vaccinating. It seems DMARDs (disease modifying anti-rheumatic drugs) may lessen the time that a person is protected by a vaccine. This clarifies a study from 2006 quoted by Jon Giles on the Johns Hopkins website. That study using Humira (adalimumab), demonstrated that Rheumatoid patients are able to develop immunity for influenza and pneumonia when vaccinated while taking a TNF inhibitor and a DMARD.
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My first experience with vaccinations & Rheumatoid Arthritis

This past fall I was waiting to begin a new “Rheumatoid Arthritis treatment” and I realized it might be a good time to talk to the good GP about vaccinations. Every fall for the past several years, he has asked me, “Shouldn’t you get a flu shot?” Every year, I’d asked my rheumatologist whether Rheumatoid patients I should get a flu shot. The two different doctors I’d had both had said, “I don’t know.”

This year, I got the flu shot. And we scheduled an appointment for the pneumonia vaccine. But meanwhile, I did some reading and thinking. I decided to take the shingles vaccine first before starting a new disease treatment (Xeljanz) that could be considered an immunosuppressant. The pneumonia vaccine is this week, but I want to share what I’ve learned about vaccines and Rheumatoid disease treatments in case it helps another patient.

Searching for facts on “vaccinations for Rheumatoid Arthritis” Patients

Over the past couple years I’ve seen patients and rheumatologists discuss vaccinations online. Recently I read about 30 pages poking around looking for evidence to make a good decision about vaccines for flu, pneumonia, and shingles. I realized that an American College of Rheumatology (ACR) workgroup proposed increasing vaccinations of patients with rheumatic diseases. It was even more surprising that both the rheumatologists I’d asked did not recommend a flu shot. Anyway, here’s what I’ve learned:

14 more facts on safety and efficacy of vaccines in Rheumatoid Arthritis patients

2. Are Rheumatoid patients at greater risk for the shingles virus? According to the CDC (Centers for Disease Control and Prevention), the risk for zoster (shingles) is increased among persons with RA to a hazard ratio of 1.9.
3. Do RA treatments put patients at greater risk for shingles? Zoster infections might also be increased in those taking TNF-inhibitors because the immune defense against zoster is T-cell mediated, British Society for Rheumatology.
4. What is a live vaccine and does it matter? Any “live” vaccine (that contains a living weakened version of the microorganism) is not recommended for immunocompromised or immunosuppressed patients. The shingles/zoster vaccine is considered a live vaccine.
5. Which vaccines are live? The flu shot and the pneumonia shot are NOT live vaccines. Neither are the hepatitis vaccines. They are given to RA patients on DMARD or Biologic therapy. The nasal flu vaccine is considered live. Several childhood immunizations are also live such as MMR, varicella, and certain polio vaccines.
6. How long do you wait between a live vaccine and starting treatment? Cleveland Clinic recommends waiting at least 14 days, but preferably one month between a live vaccine and immunosuppressive therapy.
7. Can I be vaccinated while taking Plaquenil? Plaquenil is not considered immunosuppressive enough to avoid live vaccines, but any DMARD could alter how effective a vaccine is or how long immunity lasts.
8. Can I be vaccinated while taking Arava? Leflunomide (Arava) is a stronger immunosuppressant and live vaccines are supposed to be avoided.
9. Can I be vaccinated while taking Sulfasalazine? Sulfasalazine, like aspirin, should be avoided with live vaccines due to risk of Reye’s syndrome.
10. Can I be vaccinated while taking prednisone? The CDC considers doses over 20 mg per day of prednisone to be immunosuppressive. The recommendation is to wait one month after the dose is lowered before a live vaccine is given.smartphone calendar error
11. Can I be vaccinated while taking methotrexate? The CDC’s “Advisory Committee on Immunization Practices” does not consider low doses of azathioprine, or 6-mercaptopurine, or methotrexate (<.4 mg/kg/week) to be immunosuppressive. For several years I took 25 mg/week which means I was at .47.
12. For whom is the zoster vaccine recommended? Risk of shingles increases with age since immunity to the virus naturally wanes; therefore the zoster vaccine (Zostavax) was originally approved for over 60, but now covers over 50. My doctor warned that since I’m under 50, the vaccine cost might not be covered.
13. Which DMARDS are immunosuppressive? The British health department is more conservative with DMARDs than the CDC, calling all of the following “immunosuppressive”: methotrexate, leflunomide, azathioprine, cyclosporine, and cyclophosphamide.
14. Can I take the zoster vaccine with a Biologic? The FDA does not recommend live vaccines for people taking Biologic DMARDs. However, Jeffrey Curtis at UAB has done a large study on the zoster / shingles live vaccine in autoimmune disease patients, finding that patients on TNF inhibitors did not develop shingles from the vaccine, Arthritis Research & Therapy. In a recent update, Dr. Curtis said they found the vaccine to be effective and that the FDA should reconsider its current recommendation against its use in patients using Biologic therapies.
15. Do rheumatology leaders recommend vaccinations? Doctors are seeing the usefulness of vaccines with rheumatic disease patients: Brigham and Women’s Hospital considers increasing the pneumococcal vaccine a quality care priority. In an editorial in the Oxford Journal of Rheumatology, Dr. Thomas Gluck also urges vaccinations be increased: “So, vaccinate your immunosuppressed patients! Especially now, in the winter season, this take-home message must be regarded as most appropriate. Currently, vaccination rates are 20–35% at best. It is up to us doctors to motivate our patients to receive adequate immunization.”

Recommended reading

Kelly O'Neill

Kelly O'Neill (formerly Kelly Young) has worked about 12 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over fourteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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50 thoughts on “Can Rheumatoid Arthritis Patients Get a Flu Shot? 15 Facts on Vaccinations & Autoimmune Disease

  • January 8, 2013 at 6:48 pm
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    When my now husband with RA (60 soon) was in high school he got shingles. I have always felt like that was important in in his upcoming RA when he was 24. Who am I? Just someone looking at EVERYTHING!

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  • January 8, 2013 at 7:10 pm
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    Thanks for posting this. The last two rheumatologists I’ve had have both recommended flu shots that don’t contain a live virus. I usually get it done at the office when I’m having a visit. One thing that I did notice is since diagnosis I usually have a reaction afterward for a day or so that’s like a low grade flu. This last time was the first time that I didn’t. I don’t know if that’s related to RA but I’d like to know if anyone else has experienced that. It’s good to know about the Shingles virus as well.

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    • January 9, 2013 at 5:46 pm
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      Hi Catharine,

      I stopped getting the flu shot two years ago because my reaction to it was horrible. I would get the flu for up to a month…I am not kidding…I have not gotten the flu the past two years, but I am more scared this year because of what the news is saying about the flu. In addition, I am into the first month of Cimzia I am trying to be real proactive about washing my hands and taking antibacterial wipes with me where ever I go. Gentle hugs

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      • January 15, 2013 at 10:06 am
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        It’s good to know I’m not the only one. Take care! Good idea with the handwashing and the wipes.

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  • January 8, 2013 at 7:19 pm
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    Hi Kelly, thanks for the great info. I had been wondering about the shingles vacine, now I’m going to get one!

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  • January 8, 2013 at 7:57 pm
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    Thanks for the information Kelly – I don’t think my rheumatologist is that familiar with the do’s and don’ts for people with RA, so I am always checking your site and the internet for “answers” to my questions before I even ask my Rheumatologist. Though my last question is still unanswered. I have a ‘blood’ type rash on my arms, which I found something similar with people that have Stills (autoimmune disease). When I showed the Rheumatologist my arms, and pictures of previous breakouts and asked what if it was from the meds or what it could be, his response was “huh…… no, it’s not from the medications….I don’t know what that is.” Very reassuring………..?!?

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    • January 8, 2013 at 8:43 pm
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      funny you’d say that Valerie. I’ve had a funny “rash” for over a year and asked two doctors about it who did the same thing – shrugged at me – and didn’t even write in my chart or look it up. I finally got determined to get the answer myself and figured it out with google in less than an hour. Not too reassuring – I agree. There are so many pictures of skin “rashes” that it’s a needle in a haystack but a person might be able to figure out something on her own. Of course if you’re worried, you could also see if a dermatologist knows. Do you think you know what it is then?

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      • September 27, 2013 at 6:28 pm
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        I last had a flu vaccine in 2007. Never again. I had a bad reaction with hives all over body and with great red rashes all over tummy and I both side of groin. It was worst at night …. like I was burning on fire.

        I went to dermatologist who cut a hive out but did not give the answer just that it was an allergic hive/reaction. They started taking me off all medications to find out which one.

        IT WAS the flu vax and the adverse reaction went of for around 10 months which is supposed efficacy of that vaccine. I was in tears with the pain all day and worst at night and the Phenergan did not help much only neat lavender on the hives and rash where skin NOT broken helped a little bit.

        IV steroids in hospital etc. So too frightened to have pneumonia vax could not go through that again. I just stay out of all shopping malls, supermarkets etc. over 4 months of winter and shop online.

        It is called Stephens Johnson Syndrome. Allergic reaction to medication.

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  • January 8, 2013 at 8:12 pm
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    I always refuse the flu shot. They try to force us to take it at work, but I do not work with patient’s and thus far have avoided taking it. The one time I had it 13+ years ago I got very ill. I haven’t had the flu in probably 7-ish years, even when I was on prednisone, plaquenil, methotrexate, and then simponi. My question here is that I am wonder with us having one or numerous auto-immune disorders, are we more at risk for Guillain-Barre syndrome?? Does anyone know? I also refuse the flu shot as the multi dose vials contain thermasol (mercury). I refuse to put that into my body.

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    • January 8, 2013 at 10:04 pm
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      I also refuse to take the flu shot due to the mercury. I am starting to wonder how effective these shots are. Seems they want to push so much on our kids these days and there is question immunity. I play it safe and don’t get the flu anyway.

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    • January 9, 2013 at 10:54 am
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      Your bigger concern is probably if you will get any coverage from the flu vaccine at all. In other words, you are way more likely for the vaccine to not work than to get GBS. If you do a search at pubmed you may find what you are looking for. I don’t have the time to search through and find it right now, but I have find a decent amount of studies that discuss GBS. It sounds like it is more the h1n1 part of it that is a concern for GBS which there is no flu shot in the US to my knowledge without it. Unsure about other countries.

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    • November 12, 2013 at 4:21 pm
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      I, too, refuse to get flu shots since the only time I ever got a flu shot at work, I then contracted the worst case of the flu I had ever had, if I ever did have it before that. Then I noticed other people complaining of the same response, so I looked into it, and sure enough, a study has demonstrated that the flu shot actually does make people sicker, for longer, and more vulnerable to catch the flu worse than someone who is unvaccinated. This study was done in Canada with ferrets. http://metronews.ca/health/363279/canadian-problem-maybe-not-study-finds/

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      • November 12, 2013 at 4:35 pm
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        Well, I’m not a ferret, but this was the first year I didn’t the flu, since I got my first flu shot last year. It’s not 100% guarantee – no medicine is. And I doubt we’d all respond to it the same way – given individual differences in immune systems.

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  • January 8, 2013 at 8:14 pm
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    My doctor was out of flu vaccine when I was there last month, but he and my rheumatologist wanted me to have the pneumonia vaccine…so I took it and 3 days later felt like I was run over by a truck…achey, sleepy, low grade temp…miserable. Thank goodness I don’t need it for 5 more years! I am on MTX and enbrel.

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  • January 8, 2013 at 8:19 pm
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    Kelly,

    Great article with very helpful information. It can be a real mystery and something as simple as defining ‘live vaccine’ can be overlooked when discussing vaccines with a doctor. This detailed explanation of DMARDs and biologics with respect to vaccines/suppressed immune systems really helps clear things up for those of us who might be wondering. As always, thank you 🙂

    Hope you’re evening will be a restful one with less pain.
    Larrah

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  • January 8, 2013 at 8:42 pm
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    My rheumy is also of the “I don’t know” school. Remember a few years ago when they were giving flu inhalations (up the nose) instead of the injection? That contained live virus and the rheumy said absolutely not to that. I have not had a flu shot in years – at least 10 or more. This year was the first year I actually got the flu – and it was a doozy and lasted about 3 weeks. I am on Enbrel and prednisone when I just can’t stand the pain and swelling any longer. I absolutely HATE how I feel when on prednisone – as if I am sitting watching the world go around in slow motion – and nauseas all the time. So, the choice is always mine on the flu shot and even though I did get the flu this year, I still feel safer NOT getting the flu shot – my system is so immuno depressed that I just don’t want to take the chance.

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  • January 8, 2013 at 8:59 pm
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    As this is my first year of having RA I have been learning alot, but I think theres so much too learn its overwhelming! Im currently on MTX, sulphasalazine and enbrel.
    I did have the flu jab in November as I considered it would be worth it. This winter (touch wood) I haven’t even had a cold, never mind the flu!

    As a ‘newbie’ to all this I really appreciate your blog! Thankyou Kelly x

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    • January 8, 2013 at 9:32 pm
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      thank you, Emma. Try to take the information a bit at a time – no need to overwhelm yourself with information. The disease is overwhelming enough.

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  • January 8, 2013 at 9:37 pm
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    Great information. Since I am allergic to eggs., I cannot take the flu shot. Taking Tamiflu once caused a horribly painful rash that lasted two-months. So please be cautious of all one’s sensitivities when considering vaccines.

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    • January 8, 2013 at 9:42 pm
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      thanks Gina. I almost added a disclaimer: this does NOT cover all the various reasons many people cannot use various vaccines. Good reminder.

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  • January 8, 2013 at 10:21 pm
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    Had the flu years ago and was terribly sick. Since I take plaquanil, arava and humira, my whole family gets the flu shots yearly. I’ve had a DPT booster this past year too. I had shingles (the illness) this summer and had to have a round of anti-viral medication for that and a month off my RA meds. I was offered the shingles vaccine then, with the thought that it might help prevent a re-occurance of shingles, which my Dr. said was more likely because of my decreased immunity. I decided not to do it, since I’d have to be longer off my RA meds and didn’t want more RA symptoms.
    My family also always washes their hands when they come home from school/work/shopping to help cut the risk of illness that they might pass to me. I think that helps!

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  • January 9, 2013 at 12:52 am
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    Thanks for the info Kelly. When I was diagnosed last year I began Sulfasalizine and broke out in shingles two months into treatment. I am now taking IVIG to boost my immune system and also on Cimzia and Leflunomide. My hematologist told me I shouldn’t get any vaccines for at least a year. I am so afraid of getting shingles again that my Rheumy gave me a prescription to fill and keep at home so I can start treatment if I think shingles is returning. Shingles are not only physically painful, but psychologically painful. There are no drugs that block that type of pain. If you can have a shingles vaccination, I highly recommend it!

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  • January 9, 2013 at 3:32 am
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    In the uk I get offered the flu jabs annually. So far I am pleased to say that other than a few days feeling off colour after having it, I have not had flu since the onset of my RA 16 years ago. I have also been vaccinated against pneumonia.

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  • January 9, 2013 at 8:13 am
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    Great discussion. A big concern of mine since switching to rituxin. Rituxin kills B cells and B cells are what carries the “information” from vaccines. I think the doctors learn to shrug as a requirement to graduate med. school. So glad, unfortunately, to hear that mine isn’t the only shrugger. What a mess.

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  • January 9, 2013 at 8:46 am
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    My Rheumatologist says no to the shingles vaccine unless I go off all my meds for at least a month, but he did insist I get Flu and Pneumonia shots. I have been on Enbrel and 25mg of Methotrexate for more than ten years and my RA is called “Stable”, whatever that is. He says the best time to have the Shingles vaccine is before you start treatment. The Shingles vaccine is very new and I am 53 so I think I will wait for awhile. I do not want to stop my meds and risk destabilizing my disease at this point.

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    • January 9, 2013 at 9:17 am
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      Joanne, I agree with you. If I ever reach stabilization, I would never risk it by going off meds. The new research is showing in the future, the policy may change so that you can get the vaccine for shingles since you are at high risk and higher risk as you age WITHOUT going off treatment. They are doing research on thousands of patients so that if that becomes the policy, your doc would know it’s safe.

      Few patients do reach a “controlled” state with their rheumatoid disease, and I’ve seen many suffer with shingles. But your doc is right that the BEST thing to do is vaccinate the patients upon diagnosis while tests and insurance approvals are already postponing treatments for a couple of weeks anyway.

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    • January 25, 2014 at 6:35 am
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      Joanne, I have had the flu shot with no problems
      I put off the Shingles shot for the same reasons you are doing
      only now I have Shingles and it is spread to my left eye as well
      I highly recommend to anyone with RA to come off the meds and get the shot ( I was on methotrexate and prednisone)
      If I can just get thru this without losing my vision I will be happy thinking about never taking the medicine again!!!

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  • January 9, 2013 at 10:45 am
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    Congrats on the xeljanz! I hope it ends up being a good med for you. No more needles for awhile….

    I have had reactions to vaccines and therefore do no do them. But that doesn’t mean I don’t study them at all or hear from others who get them. You are still taking a risk with the shingles vaccine even if it is true that there isn’t a risk of shingles itself from the vaccine (more than one study should be done before accepting it’s safety which you know). My grandma who has diabetes got it and was sick for weeks after. Like a flu. There are a patients with RA who complained of flares after. You are risking a flare…. Your choice, but just be prepared. The current flu shot is a disaster. Many who got the flu so far got the shot. H1n1 shot is still being questioned as a possible trigger for those susceptible for RA (as in start RA). And too many people online have stated they have gotten flares with it to not consider that a risk.

    Overall it is hard to find the middle on vaccines. They are not perfectly safe. I can’t say that some aren’t worth it. Each individual should proceed with caution. You’re the one who would live with a reaction even if it is a flare versus something more serious. With all the studies questioning the efficacy of the flu vaccine in those like us it seems completely worthless to me…. Why not offer the “elderly” version of the vaccine for one? Maybe that won’t make a difference either. Clearly it would be good if pneumonia and shingles are helpful to RD patients. With my history, too much risk for me personally, but if it benefits all of you I can be happy with that.

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    • January 9, 2013 at 11:49 am
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      Thanks Jenn. I hope I can start it soon. Although nothing has ever really worked I still get my hopes up high each time.

      I live with 24/7/365 flare for nearly 7 years now so I do not have risk of flare from vaccines. It has been a month since I got the shots and I didn’t notice anything different. Our immune systems are unique so I don’t doubt your grandma if that’s what happened to her. I think the studies that have been done so far are with hundreds of thousands of patients over the past few years so I wouldn’t be surprised if the FDA changes some of the recommendations.

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  • January 9, 2013 at 12:28 pm
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    After my initial reaction to the blog of Thank You for giving the info you found- I am shocked. I must be a real P.I.A. patient- because I don’t allow my Docs to get away with b.s. statement of “I don’t know”. My reaction to that is- ” I pay you quite handsomely to find out- so DO it. YOU are the one that has the resources to educate and if YOU do not know ( whatever ) then I fully expect YOU to find out!”
    Docs are human ( well MOST of them anyway ) BUT they are the ones responsible to educate us patients, not the other way around. No wonder my Doc sighs before he walks in the exam room door… I expect him to BE a Doctor.

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    • January 9, 2013 at 1:25 pm
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      Standing ovation Chris!

      Can’t wait to see your reaction to the upcoming “rash” post.

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      • January 9, 2013 at 5:14 pm
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        Most Rheumy’s I have gone thru advise against any live vaccines. Remember our immune system’s are compromised just by the mere fact we have Rheumatoid. Then add all the drugs most of which have varying degrees of immuno suppression which could ? make any live part of a vaccine doubly active in our bodies.

        I cannot take the flu vaccine now as in 2007 I got serious adverse reaction putting me in hospital on IV cortisone as the hot red burning rash on tummy and groin was burning me. Stevens Johnson allergic reaction.

        Several elderly people in nursing homes died of heart attacks or strokes from being given flu and pneumonia vaccines guess their immune systems could not cope with the ingredients.

        Wish governments could seriously look into problems with vaccines and fix them (instead of denying there are problems)- is it the preservative (thiomersil) or what ?

        2 years ago I got flu and within 24 hours I got a RX for Relenza and it stopped the flu within 48 hours. You have to get the RX within 48 hours and it will stop flu in it’s tracks. Although it is hard to get a doctor to agree to relenza as they prefer u to have vaccines – I do wonder if that is because they are brain washed and get the kickbacks from drug companies ?

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  • January 9, 2013 at 5:14 pm
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    Kelley,
    I had to take my dog into the vet for Bordetella vaccine. When I saw that the drug was going to be put in her nose, I stopped the vet and asked if it was safe and listed the medicine I was on. The vet, a military officer, called another department and they decided that if anyone was going to get sick from this vaccine, it was someone ‘like me’. They required my husband to pick the dog up and transport her and then keep her isolated away from me for 72 hours.
    🙂

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  • January 9, 2013 at 5:54 pm
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    My dr insisted I get the flu shot, so I did. So far this year I have had the flu two times! I just got my tentus shot and now I wonder how well it is workin with my medication. They want me to get a few more but No One in the dr offices said it will have any side effects or issues with medications! That makes me so upset since they should know more than I do! Ugh! We have so many things to worry about like can I open the door or walk out without pain. We got to them/ drs because they are suppose to know how to help us the right way. I don’t know what we would all do without you! Thank you for sharing and updating us!

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  • January 9, 2013 at 5:56 pm
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    Ps when I am sick I am out of commission for days and in pain and inflamed all over as we all are. It is hard to live that way as you know. But the dr doesn’t always feel like that happens to us.

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  • January 9, 2013 at 7:20 pm
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    My doc suggested trying Zeljanz yesterday, and I am thrilled! I only knew about it because of your blog–thank you! I am hopeful–we need to stay hopeful–that something will help. I will ask him about the Shingles vaccine–did not know about that one. My rheumy is the one who gives me the flu shot every year, and I have not gotten the flu, thankfully. I do feel a little punk for a day or two, but no big deal. I thought the pneumonia vaccine was given once every 10 years–would be interested if that recommendation will change for us?

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  • January 9, 2013 at 10:25 pm
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    I received the varicella vacxine 2-3 weeks before starting Enbrel. I was currently on Pred 5mg, Plaquenil 400 mg and MTX 15mg. I developed the chickenpox 3 weeks later… Was sick and hine from work for over a week and placed on high dose antiviral medication. I did ok after getting the pneumonia vaccine, but developed a bad flare 3 days after rexeiving a Tdap booster. Rheumy told me that can happen so be prepared when getting any vaccination. A short course of prednisone knocked it right out of me….

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    • January 9, 2013 at 10:53 pm
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      Laurie, had you not had varicella as a child? I read that the cdc considers 100% of those born after 1980 to have had the chicken pox already. How did you sneak thru?! 😉

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  • January 9, 2013 at 11:18 pm
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    I had my last flu shot over 3 years ago. Never will have another. Everything went wrong within a few hrs. Aching, weak muscles, painful joints, hives on my neck and chest for several wks. I’m convinced it put all my disorders into instant flare, and I’m still in pain. After that shot, I’ve been diagnosed w/ RA, Sjogren’s, Fibro, liver problems, thyroid nodules that have since increased in size & calcified (having thyroid removed in a few wks.),GERD, hiatal hernia, spinal stenosis, knee replacement needed, etc. I hate all the dr. appts. and tests, and constantly fear what they will find next! Of course, no doctor will admit the flu shot caused my auto-immune disorders to suddenly appear. I did have problems with my back & neck for years, but never the other problems, and never unrelenting pain like this. I wouldn’t recommend flu shots for anyone after my own experience!

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    • January 10, 2013 at 2:35 am
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      I am very sorry to hear you had a bad reaction to the flu shot. They have actually not ruled out that the h1n1 vac doesn’t trigger RA in individuals who are susceptible to RA. Time will tell. It certainly does seem to cause flares in some people and you don’t know if it will until it does. Interestingly enough the one I reacted badly to as a toddler (MMR) was suspected of causing RA and then cleared. I am unaware how far back h1n1 goes, but if you got it you may want to do some research on it. It is unknown what causes autoimmune disease, but it seems that those who get sick were susceptible. A test to predict that will help many.

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  • January 10, 2013 at 11:51 pm
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    Kelly,
    Thanks for the post on vaccines! I’m a big fan of vaccines and seriously dislike all this anti-vaccine fevor that is just everywhere these days. Seems nobody remembers that we wiped out polio and those childhood killers – measles and whooping cough. So many folks would rather listen to Jenny McCarthy (?) than their family GP. That said, you are quite right when you talk about vaccines and immuno-suppressed people, we just can’t have any vaccine that is a live vaccine if you are on a biologic or high doses of MTX or steroids. The ACR is pretty clear about their recommendations in their 2012 update – they recommend a shingles vaccine before starting a biologic but never while on one and flu and pneumonia vaccines for RA patients. These vaccines may be less effective in this population since they rely on our immune system to produce a response but they do work.
    Like you, I got a shingles vaccine before I started the biologic I am now on – ended up paying for it myself but I think it was worth it. I get a flu shot every year – also worth it. Since I have already had bronchitis twice since I have been on humira – I think I will be looking for the pneumonia vaccine as a buffer there too!

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    • January 11, 2013 at 12:01 am
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      I think we should each do what we decide based on our own history & the evidence. But I also think a lot of people don’t know what evidence is out there – I know I didn’t. We do see a lot of rheum disease patients hospitalized and these are still dangerous viruses. I have listened to a number of people suffering from shingles and our risk is so much higher. I think if people knew that, more might be vaccinated. And like you said, we may end up paying until we have the CDC making recommendations that match up with current research or even with the ACR’s guidelines. If ACR recommends pneumonia, then it should be covered, but it’s generally not according the woman at United Health Care I talked to today – unless you’re over 60. I’ll be there’s more evidence of our population’s vulnerability than healthy people over 60..

      Reply
      • January 13, 2013 at 9:30 am
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        Just saw a Medline news article on how RA makes you more likely to get shingles and more likely to get a serious case of shingles with significant complications. This is information that should help patients make that decision. What is difficult is that so many rheumatoligists aren’t giving consideration to these factors. They prescribe these very strong immune suppressent drugs and yet I read that as many as 30% aren’t pretesting for latent TB. That doesn’t seem prudent. Patients rely on their doctors to know their stuff – it’s really unfair if they don’t.

        Reply
  • January 11, 2013 at 2:00 am
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    I just had a flu shot and pneumonia shot after a visit with a new RA Doc. My previous RA Doc. insisted on a flu shot and so does this one. I have never had a reaction to it other than being more fatigued than I normally am.

    I am concerned though. Because I was not aware that the pneumonia shots are good for 5 years and my GP (who gave me one last year) didn’t hesitate to give me another one this year. I haven’t had any bad side effects from it so far, but I hope it hasn’t hurt me for the future.

    And now I am REALLY concerned about shingles. I didn’t know that people with RA are more suseptible to that. The nurse at my new RA doc asked me if I’d ever had one and I said “no, I’m not 60 yet!” I’m supposed to start a new RX regime and now I’m wondering if I should wait and find out if I should get a shingles vaccine.

    THANK YOU THANK YOU for all this information! Kelly you are a gem! I hope your new meds are your pot of gold!

    Reply
  • January 13, 2013 at 3:30 pm
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    rawarrior Thanks for posting this. I’ve been against the idea but I am going to get the flu shot. Was worried about MTX. I take 20mg/wk

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  • October 8, 2014 at 11:49 am
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    Is there any new information on getting a flu shot while on Enbrel? Rheumatologist suggested staying off Enbrel for 2 weeks, getting the flu shot and then skipping the next week of Enbrel. For a total of 3 weeks with no Enbrel. I have been having good results with the Enbrel and am anxious about stopping for 3 weeks. Also anxious about the danger of getting the flu while immune-compromised. Articles I have read have suggested no wait is necessary, others recommend a week off on Enbrel injections. Information is varied and inconsistent. Any words of wisdom?

    P.S. I am not sure I will receive an answer. The web site doesn’t appear to be active any more. But will post and hope this invaluable resource hasn’t been abandoned.

    Reply
  • October 13, 2014 at 10:08 am
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    Yeah, Kelly is back!!!! I feel like the person standing at the airport with a welcome home sign. And embarrassed I ever thought or felt abandoned.

    Reply
  • October 23, 2014 at 10:34 am
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    I have had RA since 1998 and started on Arava in late 1999. The doctors feel that mine is in remission (thank God) and I still take my Arava everyday. I have always gotten the flu shot per my Rheumatoligist every year since being dignosed with no problems. I really want to get the pneumonia vaccine, I am 60 years old but I am being told that it is a live virus and that I should avoid that one and the shingles vaccine also. Some say the pneumonia vaccine is live some say it isn’t. I am getting reestablished with my rheumatoligist just to ask these questionss. It would be helpful if someone out there knows the answer. Thank you.

    Reply
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