IV Immunoglobulin (IV Ig)

I had a great run with Humira. Not so great with Stelara & Enyvio. Now my GI wants to try IV Ig. Has anyone tried? Good/bad experience?

Thanks!

Thank you straydog...nice to be remembered

@ robwise. I’ve been on Ivig for more than 10 years. I was prescribed it for Pyoderma but it also helped my UC & thus was kept on it for years after my PG cleared up. The issue (in Canada) is that it’s off label & used as compassionate grounds so my original dosage of 50g x 3 times a month was drastically cut. That’s when I got into massive trouble with the development of fistulas. To this day I believe if I was still given the full dose I wouldn’t have developed fistulas. You’re extremely lucky to have a forward thinking doc!

Side effects are minimal for me now. Sometimes nausea & weakness but it’s gone within a few days. At the beginning I had terrible migraines. Benefit is that enhances your immune system. Until I started Stelara, I never had colds/flus. Stelara has attacked my joints and Ivig also gives me relief from that.

What dosage will you be on? Will you be doing it in hospital or at home?

I'm so excited for you and am thrilled that your GI is very forward thinking. I expect that your aches and pains will decrease, if not go away completely.

3 days of treatment was very hard for me to handle, but I was also extremely sick at the time. I usually needed to take a day off in between. I use Gamunex as well; I react to the other brands so have very specific instructions with the blood bank to only Gamunex.

It's a very long infusion but you may be able to bump the infusion rate up as you go. I'm still at a pretty slow rate so it's a 6hr hospital day; shorter now that I have a port so no more IV's! Bring books, computer etc as you'll need to keep occupied. Once the infusion starts I'm not allowed to leave the floor so I have to bring food as well. For some reason I'm usually famished after the infusion. I've heard this happen to someone else; that you go home, eat the contents of the fridge and then sleep.

I was once in the hospital with a horrific UC flare....40x day/nights....I had to convince my hospital to treat me with IVIG which took some time as it's off label. Anyway, after during the first dosage, I could feel the difference in my tummy. The next day I was down to 17 times, then 9. I was discharged home 3 days post infusion. Despite my progress, funding was cut and my treatment become monthly

As far as pre-meds I take 2 extra strength tylenols and gravol. When I get home I take 2 more tylenols and drink plenty of water.

When is your first infusion?

Well, I am still waiting for insurance approval. We are on our second appeal. Thankfully my doc is not giving up!

Has anyone had luck talking to their case manager?

Thanks!

Robwise, I cannot answer your question, however, I think it's great that you get to participate in this process. I would think hearing things from the patient could be an added benefit. I would sit down & make a detailed list of medications you have tried in the past, including side effects, what if any improvement. I also think they may ask how your disease has impacted your ability to function on a daily basis as a whole. Being prepared for this call will help you. Make your list at a time that you will not be distracted.

Good luck.