I'm going to be doing IVIG SubQ. Do any of you that are doing IVIG know the best way to try to avoid the meningitis side effect or headaches in the beginning?
Is there a special medication that can be given prior to the IVIG (or during) that can prevent the IVIG headaches that alot of people tend to get?
Also, if asceptic meningitis did occur with you, what did they do for you in the ER? I have this worry of me getting the meningitis, having to go to the ER for relief, and the ER demanding to do a spinal tap. Which would really be of no real use because we know I'm already infected, right?
Any tips and experiences would be greatly appreciated.
Thanks, y'all!
Posted by sammy (Member # 13952) on :
Make sure that you are well hydrated. Start pushing extra fluids a couple days before your infusion, during your infusion, and after. I've been told that this is the most important thing that you can do to prevent headaches.
My doctor recommends ibuprofen 800mg and benadryl 50mg 30min before IVIG infusion as premeds.
Even with the premeds and oral hydration I still got killer migraine headaches after my first few doses of IVIG. Now I get 500cc of Normal Saline IV before and after the IVIG and have had no more headaches!
If you start feeling woosy, sick or have head pressure during the infusion just ask the nurse to slow your infusion down or stop it for a few minutes and restart it at a slower rate. That will help too.
Take care and good luck with your new treatment.
Posted by FuzzySlippers (Member # 13658) on :
sammy, you're a dear. Thank you so very much for responding so quickly. I'm a bit panicked about all this.
Unfortunately, I don't think I'll be a candidate for saline flushes since I'll be doing this Subcutaneously. I'm assuming that'll be the case anyway (i.e., no saline flush wish SubQ IVIG). I had my port removed quite some time ago.
Thanks again, dear, for your help!
I'm open to any other recommendations anyone might have as well. I want to do this right.
Fuzzers
Posted by sammy (Member # 13952) on :
I started with SubQ Ig, Hizentra brand. Will you be doing once weekly infusions?
If you have once weekly infusions your dose will be much lower than the typical once monthly IVIG infusions (though if you add it up you would get the same total IG amount per month either way so don't worry).
The weekly SubQ Ig infusions allow for more steady trough levels. I've read and have been told by top immunologists that many now prefer that their patients treat with SubQ Ig because of this.
Having a steady trough is good because then you don't have the high peaks right after infusion and low troughs before infusions. Both high peaks and low troughs can make people feel sick. This can happen with the once monthly infusions. It did for me, I felt better right after my infusion and felt so sick as my levels dropped. A good steady level of IgG is what you want.
So try not to worry (I know, easier said than done). SubQ Ig infusions have some advantages and usually less risk of side effects.
Hopefully you'll start to see improvements with your treatments soon. It took a couple months for me but now that I've started I would never want to give it up!
Posted by FuzzySlippers (Member # 13658) on :
sammy, yes, I'll be doing the Hizentra, once weekly.
The information you kindly shared here is consistent with what I've been able to read in some of the literature so far. I'm happy to hear how you have described this.
Thank you so much for the info as well as the encouragement! :-)
Posted by racer (Member # 30438) on :
DRINK DRINK DRINK - more water than you think you can stand.... - that's our experience!