How did you feel after IVIG
Hello, I just finished my first dose of IVIG. I’m curious how others felt after their first treatments and subsequent doses?
I couldn’t swallow yesterday and started having excruciating pain down one side of my neck. I haven’t been able to hold my head up for a couple of days.
Dr said it could be a reaction from the IVIG so he started me on Benadryl yesterday and I will continue taking until pain subsides. He said to start 5 days before my next treatment. If continued after next treatment he will switch my IVIG. I have also been extremely tired today and it’s been (4) days since my last infusion.
Anyway, just curious how others have felt. Thanks!
My first experience with IVIG was for surgery prep to have a thymoma removed. I felt amazing. I have since had a serious flare up which has required monthly treatments. My flare landed me in the hospital for a loading round of IVIG. I have only taken Gammagard. I tolerate it very well. I premed with benadryl and tylenol. I have only experienced headaches when I wake up the next day. I have combated this with being diligent about hydration and I take tylenol at bedtime. This seems to reduce the issue for me. Hydration really seems to play a role for me. Possibly trying a different manufacturer of IVIG will help? Best of luck to finding improvement!
I get the IV infusions every other week Glad my insurance pays a lot of it they are expensive
Hello Michelle. I haven't tried any of the infusion immune globulin treatments because a traditional immunosuppressant (azathioprine) works well for me at a fraction of the cost. I will follow your progress, however, because I am interested in your results.
I am so sorry pyridostigmine didn't work for you. It is usually such a good interim medication. I hope the infusions will allow you to reduce your steroid intake.thanks! I’m not sure what to think yet. I finished my first treatment 2 weeks ago. This week my right eye burned pretty much each day this week and I felt my double vision come back a little bit. However, today the burn was pretty minimal. I do feel the same amount of tiredness and I still have burning in my thighs.
Dr said it could take a minimum of 2 weeks and up to several months before I could notice a difference. My next treatment is the first week of March. I’m hoping at the end of March neuro will start weaning me off the Prednisone. I am on 60mg/day and I’m done with that!
What is the medication you are taking? I don’t remember being offered that as an option.
Hey Jazmin, thanks for the feedback & tips! Do you get IVIG every four weeks or have you been able to space it out a little more? Do you take Prednisone still?
I’m on 60mg a day but the dr said if we notice a difference after my second IVIG I may be able to start to wean off.
This is definitely something new and a humbling experience! I appreciate all the support!
