Round 9 Day 3: Things I’ve learned along the way.

Now that I’ve been on IVIG for 9 months, I thought I’d let everyone know, who may be starting on their journey, what has worked for me to combat the side effects. 

For the first 3 rounds(months) on IVIG, I would get really bad headaches, sometimes migraines, that would start in the back of my neck, and work their way up to my head. Oh, they hurt so bad. I would also get low back pain, that was a throbbing, wave like pain that would slowly go up my spine. Sure, I’m on pre meds; solumedrol, Tylenol and Claritin(Benedryl makes me agitated), but those don’t really help with the side effects. They’re mainly to possibly help with side effects, but don’t necessarily help with these side effects.

Before I started my treatments, I did a lot of research, and spoke to my doctor and others on IVIG, to find out about side effects so I could be prepared. Even my nurses told me that the side effects usually subside after about 3 rounds. This was my case.

Every now and then, I do get a slight headache or lower back pain, but I’ve found that if I take some Excedrin as soon as the headache starts, and Ibuprofen right before bed, that the pain seems to go away and let me sleep. I’ve been doing this every day during my treatments, and it’s helped so much. 

Another big side effect I still get with IVIG is  all over body pain, from my head to my toes the weekend after my treatments are over for that month. Oh gosh, it hurts so bad. You can’t even touch me, and taking a shower and trying to sleep is horrible. The pain of the water hitting my skin makes me want to scream. I’m not sure why I get this, but I’m attributing it to the fact that I also have fibromyalgia, Sjögren’s syndrome and myopathy, and my body is just going into shock. The only thing that even helps just a little bit with this is either my tramadol or my medical marijuana. This all over body pain usually last for 3 days after my infusions are done for the month. 

So, I hope this helps at least 1 of you on IVIG. Please post in the comments what you find helps you combat the side effects of IVIG. Maybe it’ll help someone else.

One more day of IVIG for this month, and I’m done!


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