Allergies or RA?

Allergies or RA?

During my years of living with rheumatoid arthritis I’ve come to expect the unexpected weird symptom or illness. Unfortunately, I can’t predict what strange experience I may encounter, but I do know they will come, and usually at an inopportune time.

While doctors haven’t been able to explain these occurrences, I believe these issues are related to having a funky immune system and the convergence of overactive RA, while also being treated with immunosuppressant drugs. I feel the overlap between the RA, my immune system, and my treatment allows for strange things to happen.

For example, several years ago I came down with a nasty case of shingles. While this isn’t an uncommon issue, it is rare in otherwise healthy 30 year olds. Luckily, I got early treatment and so was able to recover quickly.

My latest surprise arrived recently in the form of hives. On a Friday afternoon I began noticing my abdomen felt itchy and quickly spread from a small area on my stomach to my waist, legs, back and arms.


Thinking I could save some calls to the doctor, I self-treated with Benadryl, but my symptoms didn’t improve. I conceded defeat and called my general practitioner (GP) on Sunday, procuring a prescription of high-dose prednisone to calm the hives.

While the treatment worked and the itchy hives faded after a few days, I never found out what caused them. During the next few days I saw my GP, left a message for the dermatologist and spoke with my rheumatologist. No one had an answer about where the hives came from, but the suspicion was that they developed as an allergic reaction. The rheumatologist said that people with RA sometimes do have sudden rashes and hives, but usually we never know why or where they came from.

Hoping to find more answers, I visited an allergist. He told me that 95 percent of people who develop sudden rashes with hives never find out the cause. But he also tested me for some basic allergens and I discovered I had a lot of reactions to the usual suspects: molds, pollens, grass and trees.

Now I’m wondering if there’s a connection between my RA and my allergies. Does active RA inspire allergies or vice versa? Do they have some other more complex relationship? It seems logical to me that these immune issues may be intricately connected.

While I have many questions, it still occurs to me that my RA and treatment can results in some strange experiences. One of the difficulties in handling this sudden rash and hives was that I didn’t know which doctor to call first! I ended up reaching out to several, playing phone tag and either visiting or talking via phone with a few doctors.

With an autoimmune disease and the creative illnesses that arise, a lot of responsibility falls on me to manage complex issues. It means tracking down multiple doctors for various perspectives, communicating between them and trying to make sense of treatment options. I have found that I need to be persistent with my doctors and unafraid of asking weird questions.

While my rash and hives were a comparatively minor health issue, compared to others I’ve experienced, it was uncomfortable and inconvenient, plus a bit worrisome. I kept wondering—will it get better? Will it go away then come back again? Can I have another occurrence any time?

I never know when a strange immune issue will arise, but I’ve got to be able to roll with it and learn to manage. With my doctors a phone call away and hopefully treatment soon to follow, my best guess is to try to stay as healthy as possible and take each day as it comes.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

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  • chronicstitcher
    1 year ago

    I have a similar story. Back in the late 90’s when my youngest, who is now 23, was just a toddler, one morning I woke up and my entire face was swollen, lips swollen out, eyes swollen shut and both legs and arms covered in hives. Thinking I’d suddenly developed an allergy to SOMEthing, I headed to the ER and got treated. Several days later, my legs started to itch again, I looked down, and once again, covered in hives and they were developing so fast, I could actually watch it move up my legs. Self treated with Benedryl and Zantac (that’s what the ER doctor had me take, I still don’t understand that one, but it actually does help). Took several days to get it back down. About another week later, I woke up once again with my eyes nearly swollen shut, only my top lip was swollen, and my throat was swelling. Back to the ER. I met my deductible that year in three weeks. So after that trip, it subsided and left me alone for awhile. Over the next several years, on occation and for no particular reason I could find, one finger would swell and itch, or one lip, or one hand. And each time, I’d head to see the nurse at work and she’d give me a shot of decadron. Fast forward to March 2005. I woke up one morning and fell soon as I tried to stand. Excruciating pain in both feet and both knees, that lasted about an hour, then I was fine. The next morning, it was both shoulders, it lasted about an hour. You see the pattern here? I finally got an RA diagnosis in May 2005, and was put on Remicade infusions, methotrexate, and prednisone. The mystery “allergy swells” stopped. Immediately. And it has never bothered me again. I talked to my then rheumy and she said it was part of the RA and that I had had the RA for several years before the diagnosis. In essence, I was flaring, and had no idea. Neither did my GP, he was as baffled as I was, trying to figure out what the heck I was allergic to. So to land this plane, you’re not the only one who’s had that. And I’ve talked with other RA’ers, and they have complained of allergy like swelling and hives. So clearly, this is RA related. Boy autoimmune will do funny things to the body, eh?

  • Kelly Mack moderator author
    12 months ago

    Wow! That is frustrating and baffling! But also points the strange mysteries of autoimmune conditions, doesn’t it? Amazing! Thanks so much for sharing your story! Best, Kelly

  • Anna Joy
    5 years ago

    I, too, share these types of issues/experiences, and spend considerable time thinking about and researching potential connections. Warranted or not, I can’t shake the feeling that my personal “cure” is to be found by connecting the dots between my history of rather peculiar allergies and other health issues, emotional trauma, and my current auto-immune and other health issues. OK, I should clarify – I know, at least at this point in time, my diseases are not curable – but perhaps connecting the dots can at least lead to substantial improvements, as opposed to my current rather rapid decline.

    So here are some of my “dots” (and I ask for forgiveness in advance, both for my inevitable wordiness, and for any lack of clarity… been going through a rather rough patch of super “sensory overload” from the fibro and a flare up in the middle of a flare up, none of which is being helped by far too much living situation drama and too many people who just can’t grasp that when I say please, I need some peace and quiet, I really need some peace and quiet… I’m quite sure ya’ll know well enough what I’m talking about… oh, and the start of a nine month street drainage project outside my bedroom window, happy days (not!)… so my brain is pretty much a pile of mush…) OK! dots:

    Between the ages of 12-13 developed allergies/sensitivities to – all raw plant matter. As in, raw fruits, vegetables, nuts and grains, hives from sitting in the grass, hives and welts from handling plants… Allergy testing at Children’s Hospital in Boston – some 40 simultaneous skin patch tests confirming this – doctors were and still are, clueless as to why. Cooked, heated, processed, canned… no problem. The severity of reaction goes up and down, for the past 10 years or so can eat small amounts of raw salad greens and some other things… when I turned 30 (I just turned 43) they all disappeared for about 6 months, during which time I joyfully ate an avocado a day (carrots and avocados are the two worst foods) – then they all reappeared, just like that.

    I should say – was diagnosed with seronegative RA in January 2012. “Failed” methotrexate after five months with a horribly toxic reaction, and other than prednisone, muscle relaxers, xanax and pain meds, no other treatments since, thanks to my incredible bad luck with health insurance (that’s a whole other “book” I won’t go into now!). Along with auto-immune hypothydroidism, Vit. D deficiency… last time I was under an actual doctor’s care, suspected Fibro – don’t need a doc to confirm that now, suspected mixed connective tissue disease, again undiagnosed but I’m pretty sure Sjorens… oh, and bilateral sciatica (which is what brought me to doc in the first place, then blew out my right knee for no reason in 2009, various other odd and random health issues until I finally started presenting “typically” for RA).

    I’ve also been having tons of hot flashes last month or so and suspect I’m hitting menopause, or at least periomenopause.

    So a la connecting the dots… definitely various hormonal issues going on – and the severity of my allergies/sensitivities definitely increases when I get my period (which is very random). Have read articles/studies suggesting role of hormones in auto-immune issues… so I find it interesting that my allergies developed right about when I hit puberty. Hmmm, perhaps when I’m done with menopause they’ll go away for good – that would be nice! Especially as then I definitely be able to cure my RA, as all sorts of nice people have told me I need to try juicing, it’s a definite cure (yes, I’m being entirely sarcastic!).

    Moving on… I live in permanent fear of shingles as, in another one of my feats of medical oddity, I had chicken pox twice as a kid. First time “just like everyone else” – parents made sure to expose me when it was going around when I was 6, had a moderate caase… seven years later one of my two younger sisters got it, my parents worried about my other sister getting it as we were living abroad that year and about to head back home, halfway around the world. The day before we left, guess who came down with chicken pox? (And if chicken pox/shingles isn’t bad enough on their own… well, I very much do not advise traveling halfway around the world with a 104 degree fever and pox outside and inside, and definitely don’t get your period in the middle of it as well!).

    I’ve always been prone to mysterious rashes and hives – I’ve had entire limbs covered in hives the size of half dollars – for absolutely no apparent reason. That tendency started calming down in my 30’s… seems the methotrexate “fixed” that, part of the toxic reaction involved long lasting rashes and hives, pretty much exactly one year later (stopped the mtx in May 2013) I don’t get them as often or as badly, but still more than I’d like… a new batch of rashes started up a few days ago…

    I am also highly chemical sensitive, have had to be careful with body products my whole life, now post-mtx can’t use anything that isn’t 100% natural (accordingly, I make pretty much all my own body products, as well as household cleaning products, etc.)

    So… allergies, hormones, chemicals, auto-immunity… connections?

    And while this is somewhat outside the scope of what this article discusses, I’ll briefly (yeah, right, me, brief…lol) throw in some of my other “dots”… An appendectomy in March 2006 in post-Katrina New Orleans – as in hospital ER barely open, not many beds available so in and out in about 12 hours, including the surgery, and back to a less than sanitary house (neighborhood… city!) – led to a six year nightmare of a MRSA infection that manifested as a recurring abscess in my breast (location of abscess was a bit odd, I think due to having had my nipple rings removed before the appendectomy), would temporarily clear up with antibiotics, but then return. (Finally healed it myself with benonite clay and turmeric.)

    Reason for mentioning that saga… I’d started looking for possible triggers for the RA – so on the medical side, a six year staph infection could definitely qualify as a trigger. On the emotional side, going through an event like Hurricane Katrina and its aftermath could definitely qualify.

    But that’s what got me looking back further, running into the initial development with my allergies… if there is a connection, then possibly I’ve had immune system issues since the onset of puberty? And if I consider “going there” with emotional trauma as a potential trigger, well, the year before Katrina I spent 4 months caring for one of my best friends round the clock while he died of cancer… took me while to remember that’s actually when my panic/anxiety disorder issues first kicked in, of course followed up by Katrina PTSD…. but far, far, far before all that, my mother was killed in a car accident when I was two. Hmmm, just how long have these auto-immune issues been going on?

    I apologize again for my rambling, wordiness… I hope all this makes sense enough to be an appropriate and helpful contribution… now it’s time for a nap!

  • Kelly Mack moderator author
    5 years ago

    Thanks for sharing Anna. Sounds like a lot to handle and cope with. I would not be surprised if there’s an interconnection between a lot of things and RA–allergies, hormones, environmental exposures etc. For me, stress can affect my RA along with a lot of other things. Best of luck with your journey and hope you find some solutions to help you feel better.

  • Nancy N Sallee
    5 years ago

    I also share many of the same experiences of all of us here. I have experienced allergies to many plants, food, and dust. Two allergy shots twice a week for ten years did not improve the situation and only resulted in a great deal of money spent for no apparent reason.
    I had shingles at the age of 31 and experienced a great deal of pain for three weeks. My second case of shingles occurred when I was 55. The pain was not as horrifying but resulted in tingling and numbness in all fingers and toes, which is still present when the RA monster isn’t causing the same areas to ache and pound. My third case of shingles (yes, I am up to three episodes) occurred eight weeks after the second case was resolved. It badly affected the trigiminal nerve on the left side of my face which burned and ached for over a year. Acupuncture helped a great deal. I absolutely will not take a shingles shot. Can you imagine being injected with a live virus while taking immunosuppressive meds? I would develop a fourth case of shingles and it would be the worst yet.
    I also develop hives once or twice a month for no apparent reason. Sometimes the skin peals right off my leg or arm, leaving a large area of burning, bleeding misery. While these lesions heal within a week, they leave scars behind.
    Our immune systems are a mystery.

  • Kelly Mack moderator author
    5 years ago

    Thanks for sharing Nancy. My allergist has been pushing for me to consider the allergy shots, but I’m afraid it will be a waste of time or worse–that it will aggravate my RA. Good to have your perspective.

    That’s terrible about all your bouts of shingles and hives! Totally agree about our immune systems being mysterious.

  • Connie Rifenburg
    5 years ago

    I have very similar experiences, and loved the way you described how it affects “us”. Shingles twice, Hives that were so strange, the doctor called another doctor to come in the room to see how they were appearing all over my body as they watched. They ended up taking punch biopsies of them as they watched more and more appear. No conclusion. Thankfully, for the most part, they didn’t itch. But would appear early morning within an hour of rising, and go away by about 3pm, leaving no trace! This went on for months. The hives came and went for days at a time. Then just stopped.

    Your idea of allergies being a forerunner to RA is interesting. At age 9/10, I began to have terrible stomach problems, vomiting, losing weight. Diagnosed as having an ucler and put on milk and egg diet. (well, this was the 50s) I got worse and worse. Finally the “family dr” thought I should have allergy tests. Pinpricks all up and down my arms in 4 rows. Daily the list became longer to what I was allergic to.. until… WHALA. MILK. It actually blotted out all the other tests on that arm! (wonder why I kept getting sicker?)

    After 2 years of daily meds and wkly shots, I became tolerant of most of my allergies…even milk..but in small doses.

    None of my siblings had allergies except my brother at birth to milk. My son was born with milk intolerance in the 70s. My sister’s one son born with milk intolerance at birth. So the gene seems to slip around as to the allergies.

    What I wonder is: Genetically, I was born w/brown eyes, my sister & brother w/blue. They were born with the ability to tan, I burn. They look like my father’s side and I look like the spitting image of my mother. I was 9 lbs at birth, they were premies. They were tall (5’10″+) and I am 5’4″.

    I have followed in my mother’s footsteps with the disease she had: RA,Osteo,Glaucoma,Wet Macular Deg., and the last 5 yrs of life; Alzheimers. My brother died young @ 50 from the effects of HepC. My sister had Uterine Cancer and my father’s side of the family all had cancer and died of it. My sister has beaten it so far (7yr).

    Since my mother had many allergies over the years to medications she was on and the treatments for her diseases were not as sophisticated as we now have.I wonder if the progress of all the disease I’m showing are related to the same gene that makes me look like her, and the protection for my sister who carries more of my father’s side.

    Since my mother ended up having Alzheimers at age about 80, both my sister and I are trying to decide whether we want to have the DNA test for the gene. The issue is: would you want to know? (age 65 and me 63) or would it place unwanted tension if I were only to show up w/it since I have shown all of my mother’s other diseases, and my sister…none.

    I’d like to hear what you might have to say about having DNA test on diseases in general, and on Alz. in particular. Would you want to know? There is a link shown recently between the areas of the brain associated with Glaucoma and Alz. I wonder that our older relatives never dealt with these issues because they didn’t live as long.

    Sorry for the long post. I don’t seem to be able to write in shorthand. 🙂
    sincerely,
    Connie

  • Patricia
    5 years ago

    I was diagnosed with RA in August of 2012; prior to that, I had “fought” allergies for years. Even took the shots for a period of years, until I was told I’d reached a plateau and should stop. Those did help, by the way. But I still have some allergy problems. Autoimmune problems reared their heads in the form of thyroid problem (for which I take meds) and litchen planus, which is also an autoimmune disease of the skin… I also had Shingles prior to the RA diagnosis; lucky for me, it was a very, very mild case. I had had the Shingles vaccine, plus I got to my primary care dr. as soon as I suspected that’s what the 2 or 3 little spots were. He put me on an antiviral med immediately, and I was surprised how quickly I got over Shingles based on what I’d heard others say about their experiences with that…I was also lucky in that I got to my primary care dr. within a couple of weeks of the beginning of the RA flare, which was getting worse daily! And was lucky that he took one look at me and my symptoms and sent me immediately for tests. Those all came back positive RA markers and my inflammation level was “off the charts”….There seems to be a shortage of Rheumatologist around here, and it took from August 2012 until mid-October 2012 to get in to see one as a “new patient.” There, again, I’m lucky I got a really good one who really listens and also lucky that I responded well to the MTX and Hydrocholoquine. I went into clinical remission in July of 2013…so far, so good. I continue my meds and see the Rheumatologist about every 8 to 10 weeks for a checkup and blood work…..So it seems that allergies, Shingles, and autoimmune problems could have a relationship. Aren’t we lucky to have them! Yes, that last statement is sarcastic!

  • Kelly Mack moderator author
    5 years ago

    Thanks for sharing your thoughts and experience Connie! Hopefully future research will help with all these questions about genetics and autoimmune illnesses!

  • Andrew Lumpe, PhD moderator
    5 years ago

    One of my first symptoms of autoimmune disease was hives that stuck around for over a year. My rheumy said that it was probably related to RA.

  • Kelly Mack moderator author
    3 years ago

    Hi Medtech, Sorry to hear about the hives! Have they calmed down yet with the medication? I heard similar things from my allergist last year when I had some hives and we never figured out the cause. Definitely call your doctor immediately if they get worse or if you start having trouble breathing or swallowing as that can be an urgent problem. Hope you are feeling better! Best, Kelly

  • medtech
    3 years ago

    It has been awhile from these posts, but the hives interest me. After eight years of RA and seven years of enbrel, I just developed hives. I have never been allergic to anything. They come on in the morning after my shower and they itch. Zyrtec works wonders, but I have no idea what the allergen is. I am just wondering after being on the Zyrtec for three weeks, will they have stopped. My allergist say something ramped up my immune system and it may take awhile for it to calm down.

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