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Help - Angioedema Reaction to Antiobiotics - may need to go to ER for antiobiotic IV

Discussion in 'General ME/CFS Discussion' started by Jennifer J, Aug 2, 2017.

  1. Jennifer J

    Jennifer J Senior Member

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    Help please, need to prepare myself with what will take place and how I can navigate things if I need to, might have to go the ER tomorrow. Thought it was a bug bite on my face. It became large and infected. Tried to help it and put hydrocortizone cream on it, made it worst. :bang-head: (Not a good choice I found out.)

    Just saw a doctor, he wanted to put me on antibiotics right away but there is nothing I've been able to take without angioedema except Clindamyacin which years ago but made me real sick to my stomach had to stop (not sure if it will cause angioedema now since I've become worst with reactions since then).

    Doctor has me using Mupricon cream but if certain symptoms appear or it is bigger tomorrow he wants me to go to the ER and have them give me an IV antibiotics.

    I'm scared. How does that work? Will they be dosing me with Benadryl too? That would be bad. I had low sodium last week due to my Diabetes Insipidus, desmopressin, and water (trying not be to dehydrated in my room, drinking what the Endo recommended), just had another blood test yesterday, not sure if it's alright now or not. Benadryl will make my Diabetes Insipidus worst, dry eyes and ME/CFS.

    Don't know how I'll do. I'm crashing now. Need to try to wash my 5 month dirty bed sheets tonight. This happened to me last year, too. I think I get a scratch and I'm sleeping in bed sheets usually 5 months not washed, and only able to wash once a month my 1 pair of jeans, bra and a couple of shirts that I wear to leave the building . My sheets are too dirty maybe that's why this happened, and I go up to 9 days without showering probably doesn't help! :(

    What will happen at the hospital to me with being allergic to antibiotics? And benadryl complications? I'm so sensitive to plastics, the smells of so many things around me, almost everything that goes into my body or on it, they exacerbate my angioedema which I have 24/7 for 16 years anyways, how is this going to work?

    Thank you if anyone can tell me how this can be done. (Not sure if I'll be able to type much after this post.) I really hope the mupricon does the trick and I don't have to face this tomorrow.
     
    Alvin2, merylg, rosie26 and 1 other person like this.
  2. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    OMG, Jennifer!!!!!

    They will give you antihistamines with the antibiotics and watch you carefully.

    If you don't think you can tell them what you have just written here, show them this post.

    Which hospital does this doctor want you to go to?

    I can take you there tomorrow afternoon, but I'm sorry to say I can't stay or bring you home. Can you take a cab home?
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    OMG, Jennifer, I am so sorry to hear this is going on. Last year I got a staph infection behind my ear and the doc wanted to put me on antibiotics and like you, I am allergic to multiple classes of them. I was also given Mupricon cream and had to apply it 4x per day and luckily it resolved without needing an oral antibiotic which I am praying will be the case for you.

    If the hospital wants to give you an antibiotic that you absolutely know will cause anaphylaxis, then you have the right to refuse. If they want to give you one like Clindamycin that you think might be okay, then they need to give you pre-meds first. Ideally, this would include IV Benadryl but if you absolutely cannot tolerate Benadryl, then Atarax can be an alternative. The problem is that Atarax does not come in an IV form like Benadryl so it is not as quick acting in an emergency (but in a non emergency, it is the best anti-histamine and pre-med that I have ever taken).

    I wish I did not live 3 hrs north of you or I could help you to get there. If the angiodema gets worse, then please let @Never Give Up take you to the hospital. I know it can be hard to accept help from others when we want to be independent (I struggled with this for 3 yrs of people pushing my wheelchair and it never goes away) but if there is anything that I can do from afar (like help to pay for a cleaning person to change your sheets, do laundry, etc, just let me know). I really mean it and would not offer if it was not sincere.

    You have such a kind heart :heart: and it makes me so sad how much you are suffering. Please, Please let us know what happens tomorrow if you can, even if you just type one sentence.
     
  4. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    So sorry to hear this, @Jennifer J. I don't have anything useful to say, just a :hug:
     
  5. Comet

    Comet I'm Not Imaginary

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    Oh no! I'm so sorry you're going through this. I wish I could help, or at least wash your sheets and tuck you in. :sleep:

    Will be thinking of you. Let us know how you are if you can. :heart:
     
  6. Jennifer J

    Jennifer J Senior Member

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    Thank you, everyone! :hug: Fingers crossed for tomorrow and proceeding days. I'm very touched by your responses. I feel better knowing I'm not so all alone doing this, and that I can post here and people care. :)

    A big thank you @Never Give Up and @Gingergrrl for your offers, so incredibly generous and nice of you. I pm'd NGU, and I'll send you one Ginger another day.

    I'm thinking of all of you.
     
    Last edited: Aug 3, 2017
    Alvin2, MEMum, merylg and 5 others like this.
  7. lansbergen

    lansbergen Senior Member

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    Find somebody to change your bed sheets. There must be somevody in the neighborhood who can do that.
     
    Luther Blissett and belize44 like this.
  8. Mary

    Mary Senior Member

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    @Jennifer J - I'm really sorry you're going through this, and I'm very glad @Never Give Up and @Gingergrrl are here to help! I don't have any experience with angioedema etc. But I did take Clindamycin once, and if you are given it, I'd strongly urge you to start taking a good probiotic, or drinking kefir, right away. I think it affected my digestive tract in about 2 days - it hit hard and fast. It's known for carrying a risk for C. difficile. I think most ABX do, but not all have a black box warning.

    Let us know whether you have to get an IV or if the Mupricon cream does the trick -
     
  9. Comet

    Comet I'm Not Imaginary

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    Thinking of you this morning and hoping the worst has passed. :hug::ill::hug:
     
  10. belize44

    belize44 Senior Member

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    How awful for you, Jennifer! Have things gotten resolved now, or have you sorted a ride to the ER? I wish I lived closer and could help you out!:hug:
     
  11. Jennifer J

    Jennifer J Senior Member

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    Thank you, everyone. I'm still home, slowly waking up. Not sure if I need to go to ER or not. I tried to get something clarified with the Doctor yesterday but the Medical Assistant wouldn't allow me to speak to him. He was 2 feet away from me. :( Anyways, medical assistant wasn't very good (could be a whole other thread).

    Excuse this if it's a little disjointed or rambling. I'm frustrated and need to get it out (and hopefully someday do better at this). I'm sure unfortunately many/most can relate to parts of this. Also, this is a reminder for myself and anyone who may need to remember to have the doctor show and tell you precisely when they are with you. Especially when measurements are in centimeters and they say if it's any bigger the next day go to the ER....

    I'm not sure about measurements of the site. There was no mirror in the exam room for me to see how the doctor was doing it. I pulled out my little purse mirror but realized later when I used their restroom mirror what I could see in my purse mirror didn't suffice. I ought to have measured it when I came home or in their office to make sure what the MA was telling me was right. :bang-head: (Can't really have them tell me by phone or do it today, precisely how they were doing it may have changed.)

    I can't think quick enough when they block me from the easiest most direct route to get an answer and then having to deal with an MA that repeats back to you what he thought you said and it was nothing like what you said! Then after clarifying, I want to believe what they tell me (or I want to not create waves) and question my judgement along the way (not a good thing in these situations). Or if I can I have to try to reassert which becomes a struggle.

    Then there was no mirror for me to see how the MA was doing it and if it was right. I could tell he didn't want to deal with me (which makes me uncomfortable). I was being nice (which was an effort) but assertive.

    I think this is one of the many reasons it's good to have an advocate or from what I hear having a man with you really helps.

    I need to rest and regroup. I'll post a short one when I can. Thanks everyone for your support it means a lot. :)
     
    Alvin2, MEMum, Valentijn and 9 others like this.
  12. Gingergrrl

    Gingergrrl Senior Member

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    In your best guess (even if you cannot measure the exact size to compare to the doctor's), does the angiodema look and feel better or worse?
     
  13. Jennifer J

    Jennifer J Senior Member

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    @Gingergrrl, thanks. It's the size of the infection from the scrap or bite. From one angle it looks the same, from another it measures a little bit bigger (1/2 centimeter). Not sure if I even noticed it from the bigger angle before or even if it was not measured that way yesterday. :(

    I just don't know. I know this can go down hill seriously fast, yet at the same time I don't want to needlessly put me through the hell of ER and possible life threatening consequences of them treating me. Either way it can become life threatening. I do feel cold and warm today, yet, the weather is different from yesterday, I'm scared, I'm eating garlic, pushed hard yesterday not good for ME, and I'm sleep deprived, so I have no idea.

    I really don't want to go to the ER yet I don't want to be unwise. Not sure if his call is accurate about if it was even a little bit bigger, they don't meet patients they can't treat with oral antibiotics for these things and it can become so serious. Is it over cautious on their part cause of the how bad the consequences can be?

    Also he was concerned that it was on my face. Not sure how that factors into the danger opposed to when it was on my ear last year. So not sure if I'll be alright or not. Wish I could not get scared about this one, it's hard to distinguish what's something else (and what else it is) and what's cause I'm scared.

    I'm so sleepy. I woke myself up a few hours into my sleep so I could put the cream on at the right time and as usual had problems going back to sleep after being up.

    Also, still dealing with complications from low sodium. Endocrinologist office needs me to call them with instructions so not sure what symptoms may be due to that.

    Need to nap and my yogurt I just went to eat is bad so have to get some protein food. Sorry, if I went on too much. One of those days we all deal with, how to do what, and what to do. :/
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    Jen, is it near your eye or causing your throat to swell or become narrow? If you don't go to the ER, will you have a follow up appt w/the doctor?

    It concerns me both from an allergic & anaphylaxis perspective and a potential infection getting worse. Do you have a fever or chills?

    Is there an Urgent Care near you if you don't want to go to ER but it gets worse?
     
  15. Comet

    Comet I'm Not Imaginary

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    Just a reminder that tomorrow is Friday in case you need to get in touch with the doc before the weekend.

    Wish I had something more helpful to say.

    Thinking of you. :nerd::sluggish:
     
  16. Luther Blissett

    Luther Blissett

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    Best wishes Jennifer at this worrying time ,:hug:

    Thanks for everyone in the thread too, I see my twin brought nerdy along, brings back memories.
     
  17. Comet

    Comet I'm Not Imaginary

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    Pulling out the big guns to try to make JenJ smile. :thumbsup:
     
  18. gregh286

    gregh286 Senior Member

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    I had facial angioedema since 1994. Both sides. Swells every few weeks.
    Ketotifen ended it. No attack this year.
     
  19. Jennifer J

    Jennifer J Senior Member

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    Wow, @gregh286, that's great to hear! I'm happy for you. :) Thank you for writing that. Hopefully it will do such wonders for me and for other people who read this.


    @Gingergrrl, thank you for the Urgent Care suggestion. :thumbsup: More to maybe say another day. Too fatigued now.

    Thank you everyone for your support and caring!! :angel: The doctor also wasn't sure about the markings and how they measured it. (Too tired to elaborate more.) She thought I could continue on my cream if the size didn't become bigger or I didn't have any other symptoms. I was elated. It's still a wait and see. I'm just thrilled for this moment.

    I told her I couldn't wait to go home and tell my friends (all of you) cause they are worried about me. You don't know how much you all mean to me. Opps, tears are coming again from thinking of everyone here. I don't want them to get in the medicine on my cheek. (I'll maybe say more another time.) This forum really is an amazing thing and everyone on here. :love: Thank you everyone! :hug:
     
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  20. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Great news, Jennifer! So glad things didn't get worse today and that you didn't have to endure the ER and related treatments. Fingers crossed that tomorrow will bring improvement. :hug:
     
    Mary, rosie26, MEMum and 5 others like this.

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