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High IgE levels plus other auto immune problems…

Does anyone have a combination of auto immune problems?  I have adult onset severe allergic asthma with high IgE levels and rheumatoid arthritis.  So, so tired with all the meds and combined flares…

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  • K8sMom2002

    Hugs, that sounds like a very rough situation!  I know at least two of our members have reported auto-immune issues that complicate their asthma management.

    Could your rheumatologist work with your allergist or pulmonologist to coordinate treatment? There may be some newer biologic meds out there that could work with both?

    What triggers your asthma? Maybe we could help brainstorm ways to help you reduce your triggers. 

  • Megan Roberts

    Hey @DD, sorry to hear you're struggling with the dual diagnoses.  Was just reading a bit about RA with asthma and didn't realize how much RA can also affect the lungs.  I know just allergies/asthma can be so fatiguing and hard on the respiratory system. I'm wondering the same as @K8sMom2002, if there are any ways to improve your environment to help reduce those triggers. I know just an allergy-triggered asthma flare for me can completely deplete me for a few days.  

    Aside from medications that could help treat the symptoms contributing to fatigue, what are some ways you've found so far that help you cope with it?  Like making sure you are hydrating well, meditating, taking vitamins that contribute to energy like B and D, setting a daily walking goal for yourself, building in some down time to your life to recharge between activities, or even just picking some things to let go of that are unnecessary and don't bring you joy and just zap too much energy? You may not be able to regain your previous energy level right now, especially during those flares, but hopefully you can find some ways to manage and thrive in your current place!  We are rooting for you.

  • Jen

    That sounds frustrating and I can understand why you would rather not take so many meds, deal with the flares, etc .  I think talking to your doctors might be a good way to come up with some ideas that might help.

  • DD

    Thanks to all who have responded.  Pulmonologists and others are still trying to figure everything out since 2014.  Right now triggers are aerosoles…. deodorants, cleaning products… plus perfumes…  Seasonal allergies are a problem, too… and mold.  I try to avoid all of the abovemail.  Because my immune system is compromised I I've down everything from shopping carts to car doors and phones.  Have to stay away from cats and people who have colds or flu.   More later…

  • K8sMom2002

    It's totally our pleasure! Some of your triggers are the same as mine and many other of our members. 

    We have a couple of conversations going that deal with specific triggers like ours … one that comes to mind is our . 

    As for the colds and flu, are you able to get a ? What about a ? AAFA has a great blog post about , and it's already almost August. 

  • Shea

    Hi DD. I have an autoimmune disease called Churg-Strauss Syndrome, and it is a chronic allergic disease that affect my heart, lungs, skin, blood vessels, pretty much everything! So I feel your pain! I have been working on avoiding triggers (cat and dog dander are my biggest triggers, and I avoid cats/dogs and places they frequent or reside). Mold is another trigger, and I use a/c and HEPA air purifiers in my home (making my home into a safe place has really helped me). I am currently on 18mg prednisone (I have been on prednisone since my diagnosis 5 years ago, and only since starting nucala have I had normals levels of eosinophils and I've and been able get below 20 MG's without a major flare). I have fatigue every day, but I am still able to get a lot done (I am 32 yr old single mom of an energetic 5 year old, so caring for him, homeschooling, and keeping the household up and running is what I have to do, and thankfully I was able to qualify for social security disability to help pay the bills.) I have to take frequent breaks, that is helpful in managing with the fatigue, and I have really been trying to eat a low- inflammation diet. Asthma and all that comes with it (including chemical sensitivities and environmental allergies) is something I am always mindful of (or TRY to be!!!) I enjoy reading books (fantasy books are a favorite, like with Queen's and elves and dragons), and I like watching good movies and TV series (like Game of Thrones!), going to parks when the weather is agreeable, and shopping at Target and the mall when its hot. My favorite new asthma-thing is my vog mask (I wore it to the mall the other day and was comfortable in it: 

  • Kathy P

    Hi DD. What kind of things do you do to minimize your issues with seasonal allergies? I find that keeping windows closed during peak pollen times is helpful. But it's not always possible either because it winds up too hot in the house. Here is a good article on pollen allergy with tips –  

    I have issues with mold too. It's really bad after a rain when everything is damp. I have found that one weird source is my sink drains. This article has great tips on where mold can hide - 

  • DD

    Well…. with high pollen…. my windows are closed and I stay inside…   My drains, especially in the shower, I dump baking soda down then and then pour white vinegar into the drain.  It all bubbles up… After at least an hour or overnight or all day…. I let the warm water run into it…. NO more mold or smell…. NO chemicals and it's works great!  

  • Jen

    DD – Good tip on the baking soda/vinegar for the drain.  I have used that in the past when my sinks have been clogged.  Makes sense that it would work for clearing out mold.

  • K8sMom2002

    DD, on what Jen says on the vinegar/baking soda trick. What other DIY cleaning solutions have you tried? 

    And I hear you on windows closed and pollen! 

  • K8sMom2002

    @DD, what sort of plan do you and your doctors have for heading into August and September? 

    For us, we always need a "sick plan" so that we know what to do in the event one of us catches a late summer cold. And of course, I like to be extra vigilant about avoiding colds and flu.

  • Jen

    @DD Do you change any of your cleaning tactics to deal with the various allergens/irritants that are around in the fall?

  • DD

    I never change any cleaning tactics at all… If I don't  react to cleaners I use them.  Right now As far as laundry goes, I use only fragrance free everything.  If I'may going to be away, I take my own pillows and towels.  So farm so good.    At the moment my major concern is prescription drug costs…. Going to get my doc to give me scripts for Canadian pharmacies. 

  • K8sMom2002

    I hope so! And there are other resources as well that may help you! 

    AAFA has a web page that lists resources for , including non profit organizations that assist certain people, depending on their illnesses or their medications and the organization's current level of funding. 

  • K8sMom2002

    @DD, how are things going? I'm hoping that September is being kind to you — it can so often mean a flare in asthma for folks!

  • DD

    Well… September for me has been really bad.  Got a double whammy of Rheumatoid flare up. .. plus asthma flare up… Lot's of wheezing in my lungs… trying to get the right antibiotics working… 2 courses of steroids so far… Coughing up a storm… Have pulmonologist appt this Wed plus Xolair injections again…  Whew… hate it.  Sept reminds me that I can die sooner than later… Not a happy camper these days!

  • K8sMom2002

    Oh, no! Hate that you've got so many flares going at once. Ugh on the steroids, and I hope the pulmo can give you a good plan forward. Any light at the end of the tunnel?

  • Kathy P

    Hugs @DD - sorry to hear that September has not been a good month for you! Is it just a domino effect with rheumatoid flare up that triggers everything else? Or the change of season? as it's also back to school time and everyone starts swapping germs again.

    Hope the pulmo and Xolair go smoothly.

  • DD

    Thanks Kathy P… I really believe its the fall allergy stuff that severly drivrs my system to extremes… Actually can't wait for my dic appts this week… Thanks again for your support!

  • DD

    Thanks k8smom… I need those hugs… Hope there is light at the end of the tunnel… sooner than later!

  • DD

    Well… I am waiting in the ER… my second time since Fri…  Trying to get this infection under control and my breathing stable.  Just scared… Keep you posted…

  • Kathy P

    Hugs @DD! Sorry you wound up at the ER – I hope they can get things sorted out. We are here virtually holding your hand – it sucks to be sitting there scared. Did someone go with you? Keep us posted.

  • K8sMom2002

    Very big hugs, DD — I hope things get turned around very quickly and that by now you're either home with a good plan and able to rest, or tucked into a hospital bed with good nursing staff tending toward you.

  • DD

    Thanks so much for the good wishes.  Right now I'm stuck in a bed in the hospital hallway…. waiting for a room.  Its been a long, long day so far…. Could use some food, too… 6AM this morning was long ago….

  • Kathy P

    Oh no! I hope you get a room soon and some food. What a long and exhausting day! Have they started treatments? Are you feeling any better?

  • DD

    Thanks Jen…. yes to food, no to room yet… now almost 24 hrs in ER… No room until later…. ��

  • Kathy P

    Ugh… hope you get settled. Not cool to just hang out in the ER! How are you feeling?

  • K8sMom2002

    DD, how are you? Have they got you a room yet? Glad that they at least fed you. What are they saying you need?

    I've spent time in a hospital hallway, and it's not any fun at all. 

  • DD

    Thanks for asking… Yes, I have a room!  Hurray!  I will be here at least for 5 days… maybe more.  Lots of IV antibio and steroids.  Getting better… Sure takes its toll on the body…  Thanks for all your support. .. ��

  • Pljohns

    DD- and hope you get better quick!!!  UGH for having to hang out in the ER/hallway for so long with nothing to eat.

  • K8sMom2002

    SO glad you finally have a room and IVs with antibiotics and steroids on board. May you get better much more quickly than the five days — but if it takes it, it takes it, right?

  • Megan Roberts

    @DD glad you are in a room finally and hope your medical team is getting things a bit more under control for you today.  How frightening.  Hoping that being an inpatient gets your lungs and breathing cleared up … hopefully sooner than expected!  Hang in there, we are all thinking about you. 

  • Leslie Ann

    @DD  I was during a similar protocol in the hospital last fall so I empathize with you. It is exhausting and I didn't get my strength completely back for 6 weeks.  Take care and be patient and try not to be afraid.  I know it's hard.  Just last night I had a bad flare and I was scared I was going south quickly into an infection like I did last fall. Thankfully I feel better today but it is frightening I know. 

  • K8sMom2002

    @DD, how are you doing today? Hoping things are going better and that the meds are kicking in!

  • DD

    Thanks for everyone's good wishes.  Came home frim hospital today and am doing better.  Lots of meds and good rest will do me good.  Unfortunately, my husband is entertaining his 30 yr old princess for 4-5 days… No food, no TLC, no meds from pharmacy… I am alone and mad as ****!

  • K8sMom2002

    Oh, no! That's really not good — well, I mean, it's good that you're out of the hospital, but I wish you had some support and your meds!

    Can your pharmacy deliver your meds? Can your husband or a friend or family member swing by and get your meds from the pharmacy? And some take-out, at least?

    Big, big hugs … glad you're doing better. I hope that you're able to get through this and have a good conversation about your health with your husband.

  • DD

    Well… a girlfriend will pk up meds.  My husband IS home.  His princess daughter, 30 yrs old is visiting from Philly and consumes him.  They are taking over the living room, pizza, ice cream, movies…etc… beach. Car shopping… I am left alone with nothing.  Therefore mad as ****… I have been in hosp for 6 days!  She will fly home Mon. He asked me to drive her to airport.  He's golfing. NO NO NO. .. Uber or him, NOT ME!..******!!!

  • K8sMom2002

    DD, hoping things are better for you and you got meds and food and support from your friends — bummer on the conflicted, divided loyalties. 

    How are you doing today??

  • K8sMom2002
    DD posted:

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    I hope that means good things? The community doesn't always recognize other emoticons. Here's a link to some of  …