IVIG #2 Update Page

ivig-1-update

Today is Sunday, and I had my second IVIG infusion on Tuesday. As I mentioned in my last post, the plan was for me to take steroids the day of infusions and the day after in order to prevent headaches (which are a common side effect of IVIG). Since there is a risk of secondary adrenal insufficiency with stopping/starting steroids every 2 weeks, most of my doctors who I discussed it with do not think it is a wise idea. Therefore this will be my last time taking steroids ahead of my infusion. Our goal is to use them less than once every 1.5 months. If it turns out nothing else works, an alternative is to continuously take low dose steroids and spike the dose on infusion days. (No thanks!)

So, here is what life since IVIG #2 has looked like:

The extra medications I have been taking to handle IVIG side effects are Celebrex 1-2x/day, Tylenol 1-2x/day, and Clariten – I won’t be redundant and list these each day. (FYI: outside of IVIG, I usually, I take no pain medications.) I am only listing symptoms that may be side effects or improvements attributable to IVIG. If I listed each symptom I have every day, this blog post will be wayyyyy too long.

I’ll start off with a good thing: Since getting my first IVIG infusion ~3 weeks ago, I have only had one fever.

Tuesday, Day of Infusion #2
I pre-medicated with Tylenol, Clariten, and 16mg Medrol. We started at 2PM which was awesome for me since I tend to fall asleep late and wake up late. The actual infusion consisted of: 500mL saline before, 30 grams IVIG infused at rate of 50 mL/hour, 500mL saline after. It took 7.5 hours.

ivig-infusion-2

My Mom called partway through. She apologized for calling and bothering me, then she apologized for not sending me a gift. 😀 Isn’t she the cutest? I told her she doesn’t bother me, and reminded her of the double batch of spaghetti sauce and double batch of fudge she sent me. She said the food doesn’t count.

I felt fine during the infusion, worked on getting my medical records scanned into my computer, and I was able to eat. My husband turned on a HBO documentary called, “The Case of the Cannibal Cop.” Hopefully my nurse returns! I took a Celebrex before bed around midnight…. then I laid there until 8AM. Hmm. I couldn’t sleep after my first infusion (which I didn’t have steroids with) either. Eventually I slept about 7 hours.

1 day out
I took my second dose of Medrol. I was exhausted, however I didn’t experience a headache until the evening, at which point I took some Tylenol. Even then, it was mild. My husband and I had a lovely day catching up on our TV shows, The Path and This Is Us.

In addition to contacting my doctor, I read through a few journal articles on medication induced aseptic meningitis, hoping to get a feel for what medication aside from steroids might be helpful to try. While the headaches are not aseptic meningitis, some hypothesize IVIG headaches and drug induced aseptic meningitis have a common root cause. Side note:  An idea I have for my blog is to share journal articles and breakdown what they are saying. Let me know what you think.

2 days out
Per my plan, I did not take steroids. My fatigue level was still pretty high. A mild headache arrived in the evening, and the pain level increased when I bent my neck. The fact the headache was worse when I bent my neck made me feel fairly confident the headache was IVIG related.

3 days out
My fatigue was not quite as bad, however the headache had gotten worse. While upright, the headache was moderate, however if I tried to lie down, moved my neck, or lean forward, the pain was severe. I attribute this to the IVIG causing temporary intracranial hypertension, but I could be wrong. You can imagine how annoying it is to not be able to lie flat when you’re sick, let alone when you have POTS. I was experiencing mild sound sensitivity, but no light sensitivity. I was a bit nauseous.

I get muscle spasms if I don’t stretch twice a day. I tried to stretch despite how much it hurt to move my neck and lean, but eventually I gave up and took a Flexeril instead. I tried Tramadol and a tiny bit of caffeine for the headache and took Phenergan for the nausea. I hate taking Phenergan because it makes me a zombie, but it is better than throwing up. I then took Xanax and Unisom then tried to sleep sitting almost straight up, but it didn’t work and the pain wasn’t getting any better. My mom told me I should let her take me to the ER, but I felt I didn’t need the ER since I still was able to text people. I texted my infusion nurse who also works in an ER, and she said that’s what the ER is there for.

Around 10PM, I finally decided to go to the ER. My husband didn’t want to go to work with me feeling so poorly, so he used a personal day and took me to the ER. I jotted down all of the medications I had taken and at what time, grabbed my med list, my diagnosis list, and off we went. It was my lucky day; the ER was dead and I got in quickly. They gave me 2 liters of saline, and medicine through an IV (Toradol, Benadryl, Compazine) and by the time I left, I was able to lie flat!

My husband was an excellent ER buddy. He was 100% silent aside from updating me on my blood pressure/heart rate readings so I didn’t have to look up. Without me even telling him or trying to look for myself, he knew I wanted to know. When I told the nurse Benadryl has a drug interaction with Mestinon, and it would make my blood pressure drop, and she replied that the fluids would offset that, he made a face at her back. The face said “OH NO SHE DIDN’T!!” and “Jackie, I’ll make them get something else if you want” all at once. Since I thought Benadryl might help, I decided to let it be. My blood pressure went from 111/74 to 94/58, but it didn’t bother me. (If you’re curious: Benadryl decreases acetylcholine while Mestinon increases it.)

Anyways, I had a lot of downers in my system prior to the ER, then we added some Benadryl. It’s no surprise I fell asleep pretty quickly after I was able to lie flat again. My sister stopped by the ER and took this photo as proof of life for the rest of my family.

er-after-ivig-infusion-2

Overall, I would say it was only half as bad as the time I actually had aseptic meningitis. The two experiences are almost incomparable.

4 days out
Yesterday, I woke up after 13 hours of sleep with an extremely minor headache (with no increase in pain with movement) and no nausea. My sister dropped off food my Mom had made me – beef stew, mashed potatoes, and a sweet potato dessert with pecan crumble topping. 🙂 I rested all day and ate a ton. I didn’t require any medication outside of Clariten, Celebrex, and some Flexeril for my grumpy back.

5 days out
That brings us to today! Today, I am worn out, but I do not have a headache at all. For the headache to come back in a big way would be unexpected, so I think I am safe. I was able to do home physical therapy, wash my hair, and eat. I talked to my parents and my mom said my grandpa, who we call Pooh, had called her to check on me. He knew since he hadn’t seen a post on here, I probably had some side effects preventing me from doing so. Here he is at my birthday 5 years ago:

while your Pooh rubs your shoulders
while your Pooh rubs your shoulders

He always rubs my legs to get my circulation going. I love you Pooh and thanks for worrying about me. 🙂 Thanks to the rest of our family who I know all worry about me too. You all tell me you read everything I post, and it means a lot! I have many chronically ill friends who do not have even one supportive family member, and somehow I got lucky enough to have all of you.

6 – 13 days out
I had some issues sleeping and an increase in fatigue, but nothing more than a mild headache. By 8 days out from the second infusion, there was no IVIG headache. (I also get migraines). I still don’t notice any major differences, but that is to be expected. I continue to not have fevers, which is wonderful. There are times when I think I have more stamina than usual, but the prompt payback from my body quickly reminds me that isn’t the case. 🙂

8 thoughts on “IVIG #2 Update Page

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  1. So sorry you had to go through that sweetie. Hopefully it will be worth the pain when the IVIG starts making you feel good all the time again. You are the smartest, bravest girl I know! Love you bunches and hope to see you soon after we get home. Hang in there and feel all the Love and support you are getting from friends and family.

    Liked by 1 person

      1. How did you get disability? I would love to talk to you about it? I have a hard time with Pots, getting treatment and everything that comes with it. I haven’t been able to find another person that has it as bad as I do. That the meds that they give don’t help much.

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        1. I’m sorry you’re having such a rough time.

          Have you checked out the patient support groups available? They might be a helpful place to compare notes with other patients and find someone in a similar situation as you. With 18,000+ members, you’re bound to find someone with some similarities to you. There is a group called “POTS” on Facebook which you can find by typing the name in the search bar on Facebook, and there is a website called DINET which has forums. Here are links:
          https://www.facebook.com/groups/PosturalOrthostaticTachycardiaSyndrome/

          http://www.dinet.org/forums/forum/4-dinet-forums/

          Also, http://www.dysautonomiainternational.org has tons of information on treatments, and also has a library of journal articles that usually are behind paywalls. Maybe you could read through some of them and see if there are any treatments you haven’t tried that you could bring up to your doctor.

          I don’t think I would much help to talk about disability with. I think my only suggestion for disability would be to get a lawyer to help you, and to ask your doctor to fill out residual physical capacity forms (google Social Security residual physical capacity form), which you can then give to your lawyer.

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  2. Thank you for the updates. It really helps as a reference just in case I need to have this in the future. My symptoms are not as near a severe but I barely feel like talking or texting. I hope that you have better days and that this infusion improves your quality of life.

    Liked by 1 person

    1. I’m sorry to hear you feel so sick Nicole. I hope things get better, or at least more stable, for you.

      Thanks for letting me know you like reading about this! It’s encouraging. I plan to update on this same post up until my third infusion, at which point I’ll start on a new post.

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