I just had my first of 6 IVIG treatments due to low immunity. The treatment went well but about 24 hours later I got a raging headache, leg cramps and aching in shoulders and neck area. This has continued. Anyone else go through this? I have taken Tylenol for the intense headache but it isn’t working. Any ideas?
I would love to communicate with anyone else who is getting IVIG treatments. I have CLL and am on wait and watch.
Thanks
Shoshana
S
I receive IVIG every 4 weeks and have for 4-5 years and it I a part of my life.
I have found that I prefer Gammagard brand as there are a few brands. I receive a bag of saline ahead of the Gammagard but no pre meds. Then when I get home I take 2 Tylenol and 2 Benadryl just as soon as I get home, I drive some distance on my own so no pre meds for me. I rest the remainder of the day. I take 2 Tylenol and 2 Benadryl before bed. The next morning it is like nothing had happened.
Now, I am not always able to have Gammagard and have to have another brand and I still do the same thing on the day of the infusion but the next day I have a real good headache and body aches much like the flu and the energy level tanks….it general lasts 2-3 days.
My question to you is why just 6 infusions for your low immunity? I have had CLL for going on 33 years and the Leukeran I took off and on as needed for17 years destroyed my immune system….so I will be on IVIG for the remainder of my life….small thing as IVIG keeps me in a very safe place!!!
Please keep me posted on how you are doing….you will do great!
Panz 🙂🙏💕☘️
Hi Shosana,
I've been on regular IVIG/subcutaneous IgG for 6 years. Headaches are a common post infusion side effect for many, but for me it's post infusion tiredness. You may be able to reduce reduce post infusion side effects by being well hydrated before your infusions and adjusting your premedications. If you still have problems, switching to an alternative product could well solve them. If you need IgG regularly, ask if you can switch to subcutaneous IgG. The infusion reactions are so much less of a concern that you can do the infusions at home on your own and side effects are also much reduced, plus subcutaneous IgG gives you much more even blood serum levels between infusions.
Neil
I have been having IVig infusions every 4 weeks for some 5 years. For the first couple of years I did premeds and they really wiped me out for the rest of the day. My treatments are about a half hour from my home and my husband would take me. My husband passed 3 years ago and I didn’t want to have to rely on friends every month to take me. I asked to try it without premeds and I did great. No lingering tiredness, aches, etc. Unfortunately, after almost 2 years without premeds I had a reaction during the infusion. Pretty scary stuff. They pumped me full of Benadryl and got me stabilized. Now I do a half dose of premeds, make sure I am well hydrated with a full stomach before I go and I’m back to driving myself and feeling good after treatment.
I’ve had around 100 IVIG infusions and never had a problem.
I've been getting IVIG every 28 days for almost 2 years. I had a reaction to the first one. Since then, I get 2 Tylenol and 1 Benedryl right before they start the infusion. It makes all the difference. I come home and usually nap. Premeds are common.
IVIG
IVIG
IVIG in the UK?
Ivig and severe headache
