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39 Responses to “Parvovirus B-19 and Rheumatoid Arthritis: Who is the real fraud?”

    1. Jenny says:

      Very interesting, Kelly! I commented in a post not too long ago that I was infected by Fifth's about 10 or so years ago. The interesting thing that I didn't tell you is that I have an identical twin sister who had it first (about a month before I did). Her diagnosis helped me tell the doctor what to test for…he looked at me like I was an idiot and also looked carefully at the rash on my legs and said he didn't see it (obviously he was used to looking at very old, blotchy skin and didn't think mine was unusual). He could not ignore the stiffness and swelling. It was a very scary thing for me as I felt like I was elderly and I was only in my 20's. When I went back for his diagnosis, he acted like he was surprised with his findings. All that to say, my hands have never been the same. Achy and stiff for the past 10 years but just now a positive diagnosis of RA. My sister does not have RA but does take Celebrex on a regular basis for inflammation. The parallel is just weird and I still wonder if there is a connection.

      Interestingly, after that Fifths diagnosis I received a call from a lab in California (I live in Alabama)asking for a pint of my blood for testing. They paid me $500 for it! I always called it my "blood money". I guess that sum would only be a drop in the bucket compared to the money drug companies would make if they found a cure. :-)

    2. Kelly says:

      Jenny! You and your twin sister should be in a study somewhere! I hope she never gets the RA.

      Did you feel like he was trying to give you the "hysterical woman" diagnosis? Sounds like maybe. I still want my money back from my fifth disease. The guy charged us $100 for the "crazy" diagnosis – I did not have insurance and would not have gone to be seen except that I was afraid. Duh.

      Sure wish I could get some money for all the blood I let now. Hahaha.

    3. Jenny says:

      My answer is "yes" for the hysterical diagnosis..that doctor had the personality and bedside manner of a walking dead person. I was afraid, too….I wanted relief from the pain but by the time I got that diagnosis I was much better. UGHH!
      My sister was jealous of my blood money. She always thought we should split it! HA! BTW…we didn't!
      I do think a twin study would be quite interesting…maybe one day.

    4. Michelle says:

      Hi Kelly! I found your blog through the Buckle Me Up Movement and have enjoyed reading about your experiences. I was diagnosed with RA in the fall of 2008 at the age of 29. I am still coming to grips with it all and am in the "research phase" of coping with this disease. I had a severe case of fifth's disease as a child, and the more I read, I can't help wondering if there is a connection between these diseases. Thanks for putting the information out there!
      Best, Michelle Charles

    5. Kelly says:

      Hi Michelle! Welcome!
      Very curious: usually it is so mild for kids. What happened to you when you had it? For me, it was just like RA. But I was over 30. My kids were fine – just had a rash.

      By the way, my good friend kinda "gets" my RA to a point since she had the fifth disease. It showed her what it is like.

    6. nygiantsfanatic says:

      Once again, Kelly, you're mading me think. I don't normally think this much on summer vacation :0)

      My son had Fifth's disease a couple of years ago. He had no joint pain or anything. Just the fever and facial rash.

      But 10 years ago or so, I contracted strep. It went ignored for 3 days by the docs because I didn't have any white spots on my throat. They told me it was just a really bad sore throat. Then later when they finally decided I had strep, I got pennicillin. I ended up having what the docs finally ruled as an allergic reaction to pennicillin.

      But after reading this, not only did I have all the symptoms of an allergic reation to a drug, but it seems I also had all the symptoms of fifth's. They seem pretty much the same. Swollen joints, rash, fever.

      Now you got me wondering. Was that all just another wrong diagnosis? Many of us have wondered it before….how long did we really have RA before we were finally diagnosed?

    7. Kelly says:

      Hmmm?
      someday, we'll get the research and maybe we'll know.

      DREAMING: Wouldn't it be great to get a diagnosis and a shot at day one and be done with it?

      Happy vacation, giantsfan!

    8. Julie Lydell says:

      Yup and your good friend was diagnosed by the kids' pediatrician not the high priced doctor who put her through a bunch of tests then had his pregnant!!! nurse take her blood for more! Hmmm…???

      Love you!
      J

    9. Kelly says:

      Yes, only the pediatrician believed / diagnosed me, too .

      Julie, since you are such a good friend, I do know that while you do NOT have RA yourself, you try very hard to understand. So, the following comment is for the benefit of others who may doubt us:

      IMAGINE you had to go through the rest of your life with with that pain that you had during the parvovirus AND the added benefit of repeatedly being doubted as many of us were by the doctor. That is often the story of RA.

    10. Sunny says:

      My preschool son and I had Fifth’s Disease about 11-12 years ago. We had both unknowingly been exposed to a family with it, and I developed symptoms first, having terrible and sudden pain and swelling in multiple joints to the degree that my family took me to a diagnostic center. The doctors there thought I was having some sort of allergic reaction of unknown origin and pumped me full of steroids, and stuck me on a brief course of prednizone. A day or so later, my son developed the classic rash, and after his and my diagnosis was confirmed by the pediatrician, we discovered that the family we contracted it from had also had a Fifth’s Disease diagnosis. At that point, I did some research about Fifth’s Disease and remember reading about the RA like effect it has upon a small percentage of adults. Indeed the literature I read even then suggested that because I had such a severe case, I might be at risk for developing actual RA later in life. The joint pain was severe and lasted for weeks/months, and appeared from that point onward to periodically re-flare. My RA is newly diagnosed this summer, but in retrospect, I strongly feel that the parvovirus was a contributing factor to the disease onset in my case.

    11. Barb says:

      I am having pain as descrived in the article. Especially in my neck and shoulders. I am maintaining on 5 MG of prednisone each day. Before being diagnosed with the parvo B19 and getting the prednisone I could hardly move. I was in tears it was so painful trying to get up in the morning and get moving. It has been 2 months since this started, I keep hoping it will go away but have read that it could stay now forever or come back intermitently. at least my doctor knew what to look for right away. I do not test postitive for RV but fear that it is in my future. wish I could find more people who have experienced the same problems and had positive results. It would be uplifting!

      • Hi Barb,
        I am sorry that you are hurting. I hope that this gets better soon. Most of the time, Parvo does resolve on its own. It probably wouldn’t hurt to get a second opinion if its not a lot better soon because many people who have RA do not test postive with the current blood tests.
        Good luck.

        • Barb Anderson says:

          Hi,
          I thought I would check back with an update. It is just over five months since my initial joint pain began. My Doctor diagnosed me as having had Fifth’s, but when I saw a Rheumotoligist in February he said I had had fifth’s some time in my life but didn’t think it caused the joint pain I currently had. He did not know what had caused my pain but explored what we could do. I do have the beginnings of some artheritis in my hands and he did say I had a calcified tendonitis in my right shoulder. I went to physical therapy to learn some exercises to strengthen my back muscles and get rid of the tendonitis. He also said I did not test positive for RA. My pain lessoned so that I would just use Aleve once in a while but it was still there and affecting my abilities to get things done. Then last Saturday the pain worsened again. It was not as bad as in the beginning but I am back on a shosrt course of prednisone to lesson it. My Dr. is re-doing some tests and added a few more. I have not heard back yet. I even asked him to check my Vit D as I have heard of a few people who live up north like I do being diagnosed with the adult rickets. It also causes joint and muscle pain. I also wanted to share that we spent 5 weeks in AZ this winter and I felt better down there, worse upon coming home to the colder weather. I just keep searching for an answer!

          • Hi Barb,
            That is a lot of “coincidences” & I hope you can get to the bottom of it soon. If you have any doubts about this dr’s conclusion, maybe you should consider a 2nd opinion.

            It might help you to read the Do I have RA? page on the top menu. There are some links to some posts about the blood tests. What I recommend is that you get copies of the test results too & ask him to explain them to you a bit. Also,it’s good for you to keep for your records & so you can have a more meaningful conversation. Let me know how it turns out.

    12. Rachel Hankinson says:

      Hey there, just doing research, in pain and wondering why? I too had a rash for about 3 days only and since it has gone away, I can barely pick up a jug of milk or walk up the stairs. I am a 34yr old woman.
      It seems that most likely this will go away:0)
      I think I must have picked up virus at the hospital as I have been coming and going for cancer treatments and body scans. My kids are fine but I’ll know for sure if they get the tell tale rash.
      Thanks for posting this! Its nice to know I’m not alone

    13. Jean says:

      Very Interesting. I was diagnosed with Fifths Disease 2 years before I was diagnosed with RA. I was 40 at the time.

      • Jean, Did the Fifth Dis. resolve after a few weeks?

        • Jean says:

          Kelley it did resolve after a few weeks. The rash started at my feet and went all the way up to the middle of my stomach. However I never quite felt the same after it all. Always tired, some bad days some good days, nausea off and on, Joint pain off and on, etc until October of 2009 when my body just could not take it anymore. My neck started to hurt, I was having burning sensations through my shoulders and down my arms, my ears were burning, I had a short stay in the hospital, once that cleared up I began to get joint pain again, not as bad as when I had Fifths Disease, but still achey and painful. I wonder now if what they *thought* was Fifths Disease was my first attack of RA, since RA causes rashes as well.

          • Jean, they can do a blood test to determine for certain if you’ve had Fifth disease I think by testing for antibody for it. The rash is usually pretty distinctive – in my family we all looked like “lace” as it says in the books. I do not think this mystery (whether there’s a connection?) is easily solved though since I keep meeting people like you whose diagnosis is muddy. What did they do for you in the hospital?

            • Alice says:

              This is very interesting considering I had a rash that covered my body and my joints were achy I ran low fever lasted about a week. I just thought I had the flu and the rash was from a diff. detergent or body soap or such. I never went to the doctor for this. Two months later I went to the docter b/c my joints were still swollen and VERY painful had fatigue something fierce. The doc at the clinic was about 100 yrs. old, wearing a very bad rug :rotfl: , and said right away that I probably have OA so he did blood tests. When I went back the next week for results another doc said I have RA and OA and set me an appointment with rheumy. I never have mentioned the rash to any doc. Do you think I should? Could it be important enough to know about? ?:-)

    14. Al says:

      Hello,

      I am posting because I’m trying to find answers for myself and I can relate to this all.

      I am a 26 year old adult female who had a test positive for Parvovirus B19 last May. I seem to have contracted it on the big Island of Hawaii where I was a volunteer with the National Park System. I had to end my term with the parks because I became ill there. I began to bruise easily on my skin and muscles and then got hiccups, had visual changes – floaters, static, and bright sparks, intense fatigue, swollen saliva glands and lymph nodes. Then the most apparent symptom, random myoclonic jerks and muscle fasciculations, (About 20 a min to start, now a year later, its more like 5 a day on a good day) started at which point I had to leave to go back to mainland America.

      After this, other symptoms emerged, a dry persistent cough, very dry eyes, folliculitis on the skin on my arms, upper torso, and neck which actually may be small vasculitis, low B12 level, a lymph node behind my ear that has been swollen for about 10 months, random pain in arms/hands/legs/abdomen, red/itchy palms, bad acne, muscle vibrations, waking up with numbness or tingling in the hands/arms, poor digestion, the diagnosis of an egg allergy and a few other allergies, dizziness, uncomfortable feelings in my chest and more.

      I have done everything I can to try to find someone who can tell me what is wrong with me or if there is any cure for me. Or at least a prognosis so I can get an idea of what my life is going to end up being like. My symptoms have generally become less severe since my illness began, but it’s been a year since I got sick and I’m still not healthy enough to live a normal live, hold a job, etc. I have seen many family doctors, specialists, and I have even spent a week at the Mayo Clinic. Everyone I have seen has told me it was either stress or some unknown virus (I guess because they thought Parvo could not possibly give me the symptoms I had). My life is in ruins compared to how it used be, I am constantly putting up with random symptoms and I never know how I’m going to be from one day to the next.

      I recently found out that adult Parvovirus could present differently in adults than in children and not many doctors seem to be aware of it. I also found out that it could trigger an autoimmune disease. For the longest time I had no idea what was wrong with me and all the doctors discounted Parvovirus for many months even thought is was the first and only thing I tested positive for right after coming home, but now I have a hunch that it may all go back to Parvo.

      I am trying to find a specialist in this as no one has been able to help me and I really need help. The anxiety I am feeling over not being able to get any help and wondering if my body is deteriorating as I deal with this illness is so much to put up with. If you have any information, please email me back and let me know. Thank you.

      • Al, I hope you find answers. That does sound confusing. Hopefully, a good rheumatology specialist can help sort it out. Sometimes, a second or third opinion is needed. Good luck to you.

      • Fred says:

        Kelly,
        Journal after journal are publishing what has been known to some of us for a long time. This cured my Bechets Syndrome (aka. every other autoimmune diagnosis given to me). The gut, our stomach and intestines are a factory. The factory needs supplies and help. Probiotics and yogurt all the time without excuses will delay if not eliminate a huge amount of most peoples problems. Throw in joint health supplements Health food store and reputable probiotics with good fresh yogurt. Time and this regime has cured me. Mine started with the same diagnosis as everyone else, the rash, the fever, etc. It is your gut that is the problem. Some say virus, some say yeast, etc. but balance the gut system and you will stop the body from attacking itself.

      • Fred says:

        Journal after journal are publishing what has been known to some of us for a long time. This cured my Bechets Syndrome (aka. every other autoimmune diagnosis given to me). The gut, our stomach and intestines are a factory. The factory needs supplies and help. Probiotics and yogurt all the time without excuses will delay if not eliminate a huge amount of most peoples problems. Throw in joint health supplements Health food store and reputable probiotics with good fresh yogurt. Time and this regime has cured me. Mine started with the same diagnosis as everyone else, the rash, the fever, etc. It is your gut that is the problem. Some say virus, some say yeast, etc. but balance the gut system and you will stop the body from attacking itself.

    15. KP says:

      Hi Kelly – I have been reading your blog for a while now, but posting for the first time. I just got my bloodwork back. The parvovirus levels seem high, the nurse said the doc thinks I have a new onset of RA. Do you know of cases where both parvo and RA are present at the same time? This is like a double blw for me…very scared, nervous..dont know what to do. I dont see my RD until june 10th…why is it so hard to get an appt with docs here in the US?

      • Hi KP,
        No, usually, it turns out to be one or the other – not 2 at the same time. Parvo is usually over in a couple of weeks or less. How long have you had symptoms?
        Did you have the Rf – Rheumatoid factor tested? Or the ant-CCP? Can you get a copy of your labs so you can look at them?
        If it’s a new onset of RA, then it should be treated ASAP in order to try to get a remission. Sooner the better. Did you read the blogs about RA -tests? (Have a look in the Tagslist Dropdown at the top of this page. Then click on the tests link to see more articles.) I’d like to hear how it goes. Good luck & I hope it goes away!!!

      • oh yeah, it’s hard to get an appt because we don’t have enough rheum docs. They are not paid as much as other specialists from what I hear. Plus it’s a hard job.

    16. KP says:

      Thanks for replying!
      I do have a copy of the report in front of me…not sure what to make of it though!!
      Parvovirus IgG – 6.5 (High)
      Parvovirus IgG – 0
      CCP – 70 (High)
      RA Latex Turbid – 28.2(High)
      CRP – 1.6(Normal)
      Sed Rate – 1.6(Normal)
      ANA negative

      I know the comment about getting an appointment with RD’s was unwarranted…so apologies for that.
      I am just too overwhelmed with this thing right now

      • KP: I did not think it was unwarranted – sometime the wait is months long. I always recommend calling around to see whether one has a wait/cancellation list. I have heard that parvo can elevate your Rf, but I don’t know whether anything can elevate the CCP antibodies besides real RA. They are supposed to be very specific to RA. There is no guarantee, but CCP is a strong indication. It is possible that the parvo antibodies are there from a previous bout with it? Did anyone in your family have parvo? Maybe you had a mild case & did not realize it?

    17. Kerstin says:

      Kelly, I was wondering if the anti-Ccp results in someone with the parvovirus would be elevated slightly or reflect those of someone with RA. I started having intermittent RA symptoms in September of 2010, and I had a good doctor that took it seriously and did the bloodwork immediately. The RF was negative, but the anti-CCP showed as elevated enough to get me a diagnosis of “undifferentiated arthritis” that would likely “develop into RA within 9 years or so”. I got pregnant in December, then 3 weeks before my due date I suddenly went into remission (about 11 months after onset). Now it’s 11 month since my last flare (my rheumy chalks that up to breastfeeding), and I’m starting to do more research. I found out about this virus and in retrospect it would make sense (I even had a face rash during one of my early, more intense flares), but I don’t want it to be a situation where I’m believing “The Lie” 😉

    18. Lisa says:

      I am at the end of my rope. Last year myself , 35 , and my tow kids , 7 and 14, all got the human parvo virus. I am at my end today. After a rough two days At work, I wrk in a restaurant, i can no longer take the pain. I have been using arthritis medicine daily for a very very long time now. I am off to the doctors tomorrow because I cannot bare this anymore. Is it possible to also have pain in one’s shoulders?? I have a knee injury from three years ago and it seems that this is my main point of pain, second is my shoulders and then my feet. This is a horrible thing yo have encountered at my age. When I had the parvo virus I was extremely ill. But being a mother looking after my kids i put myself on the back burner. Not that anyone could have helped in any way even. I have had enough.
      I am praying that the doctors can help me tomorrow already. And glad to have found this site

    19. pat says:

      In response to the Parvovirus B19. I was misdiagonosed with this but I actually had a rare type of vasculitis called Churg-Straus vasculitis! I had the rash on my hands and arms that were lace like and the extremely painful joints. It was not until I had a skin biopsy from my hand did they discover that it was the vasculitis. A year or so later I was diagonosed with RA.

    20. Vicki says:

      I had a well documented case of Parvo in 2004. They did a blood test and the titer was 10 times higher than they would expect to see in a positive. I turned bright red head to toe and my joints swelled up and totally disabled me. The joint pain never went away, 18 months later they called it RA. Here I am nine years later and I still deal with the RA. It never cleared up. Maybe it’s because I had such a bad case of it. My doctor recognizes a link and hoped it would clear up with me, it didn’t. Recently I started a new drug and it has been miraculous. My ESR is now 1!!! I’m glad my doctor never gave up on searching for something that would help because nothing else worked. I worry every day I won’t tolerate the new med and they’ll take me off it. I hope it doesn’t happen. Thank you for this blog. I have gotten so much out of it over the last few years.

      • Julie says:

        Vicki, might I ask what the “miracle” drug was? Thanks, and thanks to Kelly and all other posters on this blog. Hoping the best for you all.
        -Julie

    21. Janet says:

      Kelly: I had fifths disease 23 yrs ago, same symtoms as you, it lasted 2 months. Fast forward to August 2013, I began a new hormone therapy and 4 days later my knees swelled. I now have Rheumatoid Arthritis.

    22. Deanna Higgins says:

      Hello,

      I see that this is a pretty old blog, but am interested to know if people here are still having problems from parvo. I became ill in March 2011. Supposedly, the parvo is gone but my body has changed and I now have several secondary diagnosis, including seronegative RA and CFS. Most of my testing comes up normal but life has never returned to normal. We do have a group on FB that began about a year and a half ago, it’s called Adult Parvovirus B19 Sufferers, Caregivers and Researchers. I’d sure be interested to know if anyone has found Drs that actually “get this”.

      Thanks,
      Dee

    23. […] house to lie down and meditate upon this condition. Failing that utterly, I went to the internet. RA Warrior discusses the similarity between the joint pain that often accompanies fifth disease, particularly […]

    24. ICM says:

      Hi,

      I had parvovirus probably in october 2015. My kid had the rash. I had no symptom until 1February 2016 when after 3 h cycling I woke up with huge pain in my joints especially hands and lower back. I had no clue what it was and struggled with pain for more than 2 weeks until I went to a rheum. dr. The blood tests showed RF negative, CRP and VSH high. Nothing more. Eent for the second opinion snd this time additional tests showed IGG and IGM positive for parvovirus. iGM was not very hogh though. Both dr ignored this and stated that I have a RA seronegative which has no relationship with Parvo. Now, after 2.5 months all my joints are affected being on treatment with celebrex and prednison. I am worse in the evening and much much better in the morning. Sometimes I have simptoms like higher pain and stiffness in the whole body and flue lime simptoms(chill, I am very cold, no fever). If I sleep a lot is much better. I still believe that this is not the classical RA but the dr don’t want to investigate. So I did. Last tests showed a total allergy and pancreas problems. I did not repeat the tests for parvo but I read some studies which say that it can last for years( although in the blood tests it appears like you had the infection sometime, it is in your synovial cells). I am taking many supplements and try yo improve with a no gluten, no milk products, no red meat, no sugar diet. Cheers to everyone and be healthy!

    25. Susan says:

      Hi,
      I’ve felt pretty alone in this struggle with Fifth’s disease. I came down with it in 1995 after my kids got it at school. I was first misdiagnosed as having a reaction to Motrin, until the joint pain and swelling got so bad I could barely get out of bed. Once referred to a Rheumatologist he spent over an hour wracking his brain trying to figure out what was wrong with me. Then he asks “have your kids been sick”? Lightbulb moment! Great now I have a diagnosis, it should subside in a few weeks…. 22 years later and many doctors later no one can help me. No im not in pain all the time, but when I do have “flare-ups” I’m pretty miserable. I can’t take NSAIDS, they’re too hard on my stomach leaving me with Tylenol. Woo… some doctors when I tell them I have Parvovirus B19 they either give me the side eye or offer pain pills which I don’t want. I’ve been tested for everything over and over, and my RA is neg, occasionally my sed rate is elevated, but I’m basically serum-neg for arthritis/lupus and fibromyalgia. Thankfully my husband is very understanding and supportive. I also have found yoga to be a lifesaver. I just looked up that support group on FB and joined. I saw a movie today and the woman in the movie had a disease called Still’s disease with very similar symptoms. Almost wondered if I could have been misdiagnosed, but I did have a positive titer for ParvoB19 way back in 1995… so I’m still searching for answers and for the medical community’s validation. I’m not making this shit up.

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