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When IVIG orders go wrong
I have been getting IVIG for my LEMS for about three years now and have a pretty strict routine I follow for my treatment. Since I am still working full time, I also schedule my work around my treatment, so I can be sure to have two days off for treatment. My normal schedule is to work twelve hour shifts Monday through Wednesday, then I have my infusion on Thursday and Friday and spend the weekend recovering or taking it easy.
The first few months, I really struggled with post-infusion migraines. I do have a history of migraines, but these were a new level of migraine. Luckily, my neurologist worked with me and added some pre-meds. to prevent these. Since then, I have always gotten 50mg IV Benadryl, 25mg solumedrol, 500 of Tylenol and 500mL Saline both pre and post infusion. I also take ibuprofen around the clock to prevent a headache and have an emergency migraine medication on standby if I need to use it.
This month, my infusion center changed their computer system, so my neurologist had to update my orders and unfortunately left a few things out of my order set. This caused me to have a rough infusion day on Thursday because my infusion was delayed 30 mins. waiting for Benadryl, and I also was unable to get my post infusion saline. Thursday was rough for me because of this and I struggled to get to Fridays treatment. Luckily, my orders were all completely correctly and my infusion on Friday went much smoother.
Do any of you have a specific routine you follow for your infusion? If so, What have you found that has helped you the most?
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8 Replies
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Hi Ashley,
Oh what a learning experience I’ve had with IVIG. People who are prone to migraines, as I am, definitely have a greater risk of post infusion migraines with IVIG. My first few were doozies. Thankfully my neuro is a migraine specialist so she started me right out with 500 mls of saline before and after, and I took benedryl and tylenol throughout. However, I don’t have Solumedrol added to my infusion because when I had two doses of only solumedrol, my LEMS symptoms escalated prior to having relief. It was really scary and it turns out can happen with some LEMS patients.
Things I have learned since starting IVIG were to drink electrolyte filled beverages during and for a few days after my infusions- Sugar free vitamin water is my favorite. Immunoglobulin is thick and changes the blood chemistry- making sure to hydrate with more than just water is essential. I also learned to keep taking my tylenol and benedryl for a few days after helped stop a headache from happening.
My migraines are now controlled with a preventative, and that has really helped lesson the severity of post infusion migraines as well.
Oh, and lastly, keeping my infusion rate really slow. The highest I go to is 162- if I go higher I wake up the next day with a headache that mimics Aseptic Meningitis- I’ve never gone to the ER though, I just hydrate, rest, and take tyelenol and benedryl- Sometimes tylenol 3 if need be.
The most important part of all of the potential side effects is the reality that once the side effects subside, my LEMS is controlled. My weakness disappears, and I’ve been able to live a full life. It took me a year to write about all that goes along with IVIG treatment- but I felt it was important to share the full story about being able to live life again thanks to IVIG because it truly is a miracle treatment for me!
I feel horrible for those who don’t start IVIG because of the fears of the side effects.
I’m so sorry the orders got messed up for you on Thursday and am glad they got straightened out so that your entire treatment regimen wasn’t disrupted!
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Dawn,
Yes it has definitely been a learning experience. Getting it all worked out has been worth the effects of treatment though.
I also do my best to drink electrolytes during my infusion, I usually stick with zero sugar Gatorade!
I have also been taking a migraine preventative since 2014 and it helps immensely!
I also feel horrible for those who are scared away from IVIG due to all the possible side effects. When listed together, they do sound scary but most don’t realize how rare the serious side effects are. Aseptic meningitis sounds terrifying, but I have been lucky enough to not have it and I don’t know many people who have personally gotten in from IVIG
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Thanks for these great tips, ladies!! I have my next ivig scheduled for Monday and Tuesday (*Dawn, my neurologist increased the dose from last time – hoping this dose will be more accurate!!) and I’m putting together a checklist of reminders of what to do and what to bring for each ivig treatment (I had a nightmare last night I got to the infusion center and forgot to bring everything I needed!!). Mental note. I should switch to Thurs/Fri so I have the weekend to recover. I teach full time so I’m just taking the afternoons off on those days and seeing my students in the morning (I work 1:1 with students so my schedule is more flexible). I figure if I do afternoons, I will just need to take one day total off. I noticed the last two ivig treatments I felt flu like symptoms on day 3 so excellent point about scheduling moving forward. I’m following the Autoimmune Paleo protocol so I want to avoid Benadryl and any NSAIDs but I’m going to try copaiba essential oil and Frankincense essential oil in capsules. I’ll have to read through my essential oil books to see what oils would have the effect of Benadryl. Great advice too about not just hydrating with water. That is what I had been doing. I’m planning to try using coconut water but I’ll check out the ingredients in the sugar free vitamin water to see if that may be an option too.
Thanks for the great suggestions! 🙂
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Carmen,
I’m so glad you are finding the tips helpful! I learned 90% of what made my infusions successful from other patients.
I do need to caution you on the coconut water during your infusions because aside from being a natural source of electrolytes, it is also a diuretic. You need your veins to keep all the extra fluid possible during the infusions and until you get through that post IVIG flu-ish feeling. After I start feeling better, I’ve used coconut water to help release the fluids gained during the process. Another option to Vitamin water is smart water with electrolytes.
Yesterday I started my first sub cutaneous ig treatment, to replace the monthly infusion cycle. Look for me next column to tell you how it went!
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Dawn, thank you SO much for sharing about coconut water! I was just heading out the door to go to the store to get some for next week! I will definitely look at the vitamin water and smart water as opposed to coconut. I just don’t want to take anything that has sugar or strange ingredients. Hoping a come across something that is healthy and tasty! 🙂
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Carmen,
They also sell electrolyte packets you can add to your water, which I often drink during my infusions. I will have to get back to you on the brand I use because I can not remember the name off the top of my head right now, but it was formulated for patients with POTs who need the extra sodium. I would definitely suggest switching your infusion to Thursday/Friday, that is what I do and having the weekend to recover and be off from work is definitely needed for me to recover. I hope your next infusion goes well! Glad to help you with a few tips!
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Thanks Ashley! I had found Hi-Lyte on Amazon so I bought that and it arrived yesterday. I tried it this morning as I had ivig yesterday and today. I’ll have to experiment with what to mix it with as it was unflavored and salty – guack! Maybe I’ll mix with bone broth??? Do you continue to take it after ivig or just as prep and during?
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Carmen,
Awesome! I’m glad it arrived in time for your treatment! Let me know what you think about it! I normally just drink mine before/during my treatments, but I usually also have a bottle of Gatorade every day to keep my electrolytes up. Sadly I do not have much time to drink a lot of fluids at work and don’t have too much time to empty my bladder there also. I really like the zero or low sugar Gatorade options.
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