Bad Reaction To IVIG – Trip To ER

17 Mar

ER for IVIG

Bad Reaction To IVIG – Trip To ER

After my 5 hour home IVIG (gammagard) infusion I felt fine for a while. I started to get sleepy that night since I only had an hour sleep before the early morning infusion (I sleep during the day). I ate dinner then watched some TV feeling fine for hours after the infusion then I fell asleep. I woke up at night maybe between 12:00 -2:00 am and had the worst pain in my head I have ever felt.

It was a bad migraine. I have migraines many time each month so I know the difference in a migraine and a headache/cluster headache (I will tell you why I mention this soon). My whole body also felt extra inflamed and I was sweating worse than usual with the chills. I started to get nauseous. About 4:00 am I couldn’t handle the head pain any more so I text my mom to come check on me and bring a bucket. She gave me an ibuprofen 800 which I puked up. She tried everything mom’s usually do and nothing helped. She called the ER and my home nurse and they both recommended I go to the ER.

I got up and couldn’t walk. My mom helped get me ready and I went to the ER. My mom wheelchaired me in and I had to put on a mask since I have the immunodeficiency and people in the waiting room gave me odd looks. I couldn’t talk, and the pain was so bad I had bad air hunger. The nurse takes us back and was asking my mom what was wrong and kept asking why I was on IVIG and what else I had besides chronic lyme as if that wasn’t enough! I told her in my mumbling voice I had a migraine and needed oxygen asap.

So the nurse wheels me to my room and there sat a bed with no pillow and no sheets. Luckily my mom brought a blanket because they never brought me a blanket although I was sitting there shivering with the chills. It took forever before we got a nurse to come in and they were not busy at all it was quiet in there and all the nurses were talking about their weekend. For the first 30 min nurse after nurse and even the doctor kept questioning all of my meds like my morphine, my heart meds..etc. They would change the subject when lyme, POTS, GP or Lupus were mentioned as if they don’t exist.

They ended up giving me 2000 of fluids with IV Ativan, Clonazepam, Zofran, and 2 doses of Morphine. I didn’t want dilaudid because it does nothing and they were hesistant to give me morphine although I am on it at home daily. I also told them zofran does not help I have 8mg at home and I still puked after getting it. That was all they did, no oxygen although I was gasping for air, no migraine meds, nothing useful. I said “why no migraine meds” and the nurse said “the doctor says it’s only a headache and you have no proof it’s a migraine”. umm ok?!! So the doc comes in and says you look better already we will be sending you home. He mentioned he though I was probably only withdrawing from my morphine nothing to worry about and to keep taking my IVIG and he knows nothing about lyme pain. I don’t get “DTs” or Withdrawls from not taking a med on time. I only missed my morphine pill by a few hours that would not cause all of that. Plus I’ve been on opiates for 15 years and never had any kind of effects from the pills or stopping them.

So they made me feel like a druggie and made my illnesses all seem made up although they are all in my records including 30 year chronic lyme. It pisses me off being treated that way. The first few visits there they treated me that way but the last two times they knew who I was and took me serious with my standing order for fluids for my chronic dehydration. Maybe it was because I went during another shift (time of day) than usual?

So I am told to continue IVIG since my IgA is only 40 and I have the immunodeficiency. So I guess I will do it again in 4 weeks. I just don’t know what I can do to prevent this reaction? I took tylenol as recommended with the IV and my norco and mophine after. I also took my Ketotifen which is like Benadryl for allergies. I had an epi-pen but didn’t think that would help. It was a horrible 2 days and I have been through a lot and have chronic pain for most of my life but the brain pain is my weakness. Luckily I could text just a little so my friend kept me going through it all she was so sweet and motivational.

So to clear that up for those googling “bad reaction to IVIG” my symptoms were:

  1. severe migraine
  2. chills
  3. sweating
  4. fever (I was only 98.9 but I run low fevers)
  5. couldn’t move body
  6. couldn’t talk or think
  7. puking (couldn’t keep food or meds down)
  8. couldn’t sleep

 

I am still hopeful and optimistic that this IVIG will get my immune boosted and I will have a few good days each month. I am keeping my fingers crossed. I hope all of my fellow warriors are doing better today and keeping a smile on your face. Never give up the fight no matter how difficult it gets. We are all in this together.

 

 

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18 Responses to “Bad Reaction To IVIG – Trip To ER”

  1. Posy Bass March 17, 2014 at 2:04 pm #

    Oh my god, I’m so sorry you had to go through that. So typical!! I landed in the Martha’s Vineyard hospital last spring when I broke my ankle and believe me when I say that no X-ray was needed to make that diagnosis, it was so grotesque. The pain was completely insane, as I later learned I had damaged a giant nerve running across my foot which was why the pain was so extreme. The idiot dr could have diagnosed the nerve damage in an instant because my toes were completely numb. Anyway I got the same kind of treatment as you, as soon as I mentioned Lyme, (I had to explain the PICC line…) it was like their attitude changed. The remarks were so hurtful and they made me out like I was out trolling for drugs, lol, surely there must be easier ways to get drugs!! Total idiots!! I left there feeling so angry but oddly ashamed even though I had no reason to feel this way. It’s amazing to get treated like that at a time when you are so vulnerable and defenseless.
    On the pain front have you tried medical marijuana? Perhaps before next infusion you should get a migraine med just in case, I use relpax, it’s expensive but you know I’d pay $200 a pill when I’m in need!! It works quite well. But hopefully you won’t react so badly the next time. This will not last forever, you will get better! So pleased you went to Gordon. Hang in!!

    • 49erBry March 19, 2014 at 12:13 am #

      Ugh that sucks, sorry you had to go through all that when clearly you knew your body and what was wrong. Sometimes I wish they would just listen to us we know our body and our routine and they have to question everything like we are nuts. I have been on medical marijuana for a year now but it doesn’t help the pain but it did solve my vomiting after dinner every night issue. I also gave me my appetite back. I took my mmj right before the infusion and after the ER visit but nothing was helping that head pain. Thank you and I hope you are finding relief. Is mmj helping you a lot?

  2. Brian March 17, 2014 at 2:59 pm #

    We all know by now that the medical community specializes in assembly line medicine–talk to the patient for a minutes, make a quick diagnosis, order a few hasty labs, kick the patient to the curb, send them a letter telling them their labs are ‘normal.’ Yes, that is medicine nowadays. The knowledge / ability of any given physician borders on catastrophic, in my opinion.

    49er, I hope you are getting treatment for your babesia. My igenex babesia labs were negative but I think you mentioned in an earlier post that you’re infected. I know that can cause headaches. Maybe you aggravated the infection.?>

    • Tori March 17, 2014 at 3:45 pm #

      Omg sorry to hear this. Did they test you for allergies to antibiotics? My LLMD sent me to an allergist before treating me and it turned out I was allergic to all the cillins and all the abx that are good for Lyme, I can only take ones like Azithromycin. I have gotten rashes from penicillin. I think a lot of docs do not test for allergies so if they didn’t do it maybe look into that.
      My mother was very sick recently for weeks, and was dx’d with GERD and put on Prilosec (which as we know, kills anything good in your gut), finally she went to the ER for the pain, and it turned out she needed her gallbladder out right away or there could be terrible consequences, luckily they got it out in time. Docs didn’t even bother to think maybe there was some other cause besides GERD.

      • 49erBry March 19, 2014 at 12:08 am #

        I haven’t been tested for any allergies to abx yet. I have did well on all the oral, injection, IV abx over the past 3 years. I did get really flushed from bicillin though. I will ask about it next visit, thanks. I’m sorry to hear about your mother, I hope she is doing much better now and has her gut under control.

    • 49erBry March 19, 2014 at 12:10 am #

      yeah medical and insurance are a joke and they only care about profit. I am treating for my babesia with herbals right now. It still makes me sweat and soak my bed like crazy. Glad you were negative!

  3. clstewart March 17, 2014 at 7:45 pm #

    I also had this same reaction to my IVIg. My home health nurse infused me waaaay too fast and I was fine until the middle of the night (this just happened this past Friday!) I couldn’t walk, talk, nothing…. I went to ER and they gave me some fluids and zofran, tordal. None of it touched the pain! It’s now Monday and I am just now recovering from that nightmare. My third dose was Saturday; she slowed it tremendously plus gave me a bag of fluids before the IVIg. Maybe you should do fluids as well each time you infuse. Don’t get up! And don’t let them rush!

    • 49erBry March 19, 2014 at 12:05 am #

      Sorry to hear that. I hope you are doing better and the next dose isn’t so harsh. I have a friend that does them a few times a week and she says the reactions/side effects get more tolerable each IV infusion but she still has the migraine and feels crappier after. The ER is of no help so next time I may just stay at home as usual. I will be getting the next infusion slower and with more saline and benadryl.

  4. SHERRY SMITH March 18, 2014 at 11:56 am #

    OMG! The Dr’s and nurses are just nuts………..They dont know what to do with us Lymies, Like me I just Dr myself…………..You hang there,,,,,,,,,Im praying like crazzy for you……..and Jesus is too Sherry

    • 49erBry March 19, 2014 at 12:03 am #

      Right? I am my own pharmacy, doctor and ER most times. This time I couldn’t move so I had no choice I guess but I knew they wouldn’t help me. I don’t get why they can’t just give us what we want or need instead of what they think is right for us. we know our bodies better than they do. prayers back at you stay strong

  5. SR March 19, 2014 at 4:13 pm #

    Thought I’d chime in with my experience. My 1st infusion of Gammagard the nurse asked me to take Allegra 180mg and I took phenergan for nausea. She increase the flow 25, 40, 60, 70, 83, then I was nauseous dizzy and had a headache. She decreased the flow to 50 and kept it there. I took Imitrex 50mg and Benedryl 25mg. The headache decreased but left me with shooting pains around my head. The next day I was seriously dehydrated, the headache came back and lasted 24hrs.
    For my 2nd infusion my PCP told me to drink 40oz of coconut water the day of and day after the IVIG. The nurse never took the flow rate above 50. I still took 180mg of Allegra and 25mg of phenergan before but no Imitrex and no Benedryl and had no headache.
    Hope that helps someone.

    • 49erBry March 19, 2014 at 11:52 pm #

      That is very helpful/useful info, thank you. I am going to buy some Claritin (my LLMD recommended this with 50 mg of Benadryl) or Allegra like you mentioned. I will also try some coconut water with my e-lyte water. I will mention to the nurse about the 50 drip rate. I think mine starts at 5, 50, 100, 500? I swear I saw a 500 on there at one point. It was only supposed to be a 4 hour infusion. As far as migraine meds nobody has a great med to recommend that actually works. But if it was meningitis again then I am not sure how to help that. I normally sleep off the meningitis since I cannot stay conscious but with the migraine the pain is so bad we can’t sleep. I hope your infusion are getting better and your immune numbers are climbing.

  6. Dana March 19, 2014 at 6:18 pm #

    Do not give up!
    I am sorry you had to go threw all of that. Shame on the nurse and DR’s at the ER. How dare they treat you like that. I will pray the next treatment goes better. Keep up your strength and stay strong.

    • 49erBry March 19, 2014 at 11:46 pm #

      Thanks Dana, giving up is not an option. It’s okay i’m used to the ER and doctors so it doesn’t bother as much now but I just like to get the word out there that they need to change their ways. Hope you are having a better night. Hugs

  7. Monica March 31, 2014 at 10:05 pm #

    I have had something very similar happen to me about 3 weeks ago. I am on IvIG for Dermatomyositis. What was supposed to be a 2 day outpatient infusion therapy session turned into a 7 day inpatient admission to two different hospitals. To make a long story short, about 30 minutes after the first infusion began, I started having horrific pain in my lower back which increased in intensity and ascended up my spine into my neck and head. The pain was debilitating. I was unable to walk, move my arms, and it took every bit of energy I could muster just to speak. I was told by the hospitalist admitting me that he “never took care of a patient like me before and didn’t know what to do”.

    The real fun began after I was discharged home. Within 18 hours of being home, I lost my vision, could not walk, talk, my heart was racing, fever, low back pain, and the worst headache I have ever had. My husband rushed me to the closest ER terrified I was dying. After being triaged and taken back to a room, I was then interrogated about my medications and why I was receiving IVIG. I also take high dose steroids every day and require high dose infusions from time to time, but they did’nt question that. I was questioned about the amount of pain medications I take every day and what kind of pain medications I received at the other hospital and why I didn’t return there. This ER is around the corner from my house where the other hospital is 30 minutes across town. It just amazes me how those of us who have a chronic, debilitating diseases have to go through being interrogated and labeled as being a seeker, a doc shopper, or an addict when we have a crisis. I had a horrible reaction to IVIG and when I sought medical help I was treated like a drug addict who just walked in off the street.

    I too will be having another IVIG infusion next week but this time my doctor is pre treating me with Morphine and pre hydration in an effort to avoid some of the side effects. Praying this works and I don’t have the IVIG headache and back pain again.

    Wishing you well and continued healing. Remember you are not alone in your fight!

    God Bless

    • 49erBry April 1, 2014 at 12:18 am #

      Ugh yeah your story sounds all too familiar. I’m sorry you and all of us chronic warriors have to go through this just to find some relief. We are treated with disrespect and judged before they care to know our story. They never get personable or ask me about how I got lyme or all my illnesses they just act like I am being a baby in pain and wanting pills. I have a pharmacy at home I don’t need their pills.

      As for the IVIG I take morphine daily (100 mg) with norco 30-40mg and I drink e-lyte concentrate (electrolytes) and tons of water, tea daily and that didn’t seem to help with my headache or bad reaction. This nest one is due in 2 weeks I think and I will be taking benadryl, ketotifen and claritin (and recommended tylenol :/ whatever good tylenol does lol) all before the IV and slowing the pump rate for a longer infusion. Well I know you are somebody and not just a druggie and I am sending all my best to you. Keep up the fight and keep a smile on your face. 🙂

Trackbacks/Pingbacks

  1. Update- After The IVIG Bad Reaction | Lyme Inside - Living with Late Stage Lyme Disease - March 18, 2014

    […] headache (SIGH). If you want to read on all the side effects I had from the IVIG infusion click here and scroll […]

  2. IVIG Round 2 – #WPIW | Lyme Inside - Living with Late Stage Lyme Disease - April 19, 2014

    […] extend the infusion to 8 hours versus 4 hours that gave me the bad reaction the first time (read it here). For some reason the infusion was over in only 4 hours. I didn’t have any side effects or […]

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