IVIG starting soon
 

The neuro is putting in the request for IVIG, 5 days of infusion. It should take > 4 hrs each day so I will be out of work for a while again. They said is would take about 2 weeks to coordinate. Did you all need recovery time after the procedure? Should I expect to go back to work the next day or will I need a couple of days off? Please let me know what your experience is in this matter. It is a health agency that will be coming to the house.

thanks
kathie

You should be able to go right back to work. The amount of time depends on the rate. Mine take 2 hours. I feel real tired right after but lay down for about 1 hour and I'm good to go. Remember we are ALL DIFFERENT. Drink plenty of water day before, day of and day after. Coffee and soft drinks don't count.
Mike

When I was working and doing ivig - I would do the treatment in the morning for about 2.5 hours and then go to work (office job). I didn't have to have any downtime after. But, as previously mentioned, everyone is different. Hope it works for you!

The time it takes to do each of your IVIG's depends on the instruction that your doctor has provided to the person giving you the treatment, as pump pressure has a large part to do with the time it will take. Some prescribe starting off slow, and gradually ramping up the pressure every half hour. Particular care is taken, particularly on the first infusions, to prevent possible side effects like nausea, headaches, rash, and in general flu like symptoms. I wouldn't definitely plan on returning to work that day, as you will really have to see how your body adjusts to the infusion. Take it slow and easy, until you know how it goes, and if you have any side effects. The real secret is to hydrate at least two days before, keep hydrating during, and then for up to a week afterwards.

Wow, 2 and 2.5 hours for IVIG; that's amazingly quick. It's not common for me to hear that, and I am so happy you are in and out, but probably not as happy as you both are!

It's my understanding that many Americans, if not most, have their treatments in-home. In Canada, I am not aware of anyone receiving treatments other than Outpatients. (If any Canadians are having this at home, please let me know.)

WGreen, you brought up a very important issue, and that is hydration. It's
important to both IVIG, plasmapheresis, and...every day living. Keep hydrated!
It can make all the difference in how you feel.

The doctor said I would be unavailable all day. The instructions are for a slow dose that would take more than 4 hours and I have an hour communte to work each way. So I will not be working on infusion days. I think I will be prepared to take the day after off just in case. Thanks for the input. I hope the insurance approves it, I am still waiting to hear from them.

It is a health care agency that specializes in this that will be doing the IVIG.

I am not sure how hydrated I can become. I am still on high dose pregnisone and it makes me urinate every hour!
thanks
kathie

I did this exact same treatment last week. My treatments were about four hours. I took Benadryl and Tylenol 30 min before treatment and drank water every waking moment :) starting two days before treatment. I had a,few bad headaches. After the first one, nurse told me to take Tylenol the second it hit...that wiped the others out. I took Tylenol pretty regularly through the week. It wasn't bad. The worst part to me was feeling like a zombie from the n
Benadryl. I was just sluggish....couldn't drive from that. But, I still went to my kid's ball games, etc. the biggest shock to me was e vital sign monitoring. I had visions of lying on sofa reading, watching TV, etc. my nurse took my vital signs every 15 min. During the treatment....made relaxing and reading a tad bit difficult. It really isn't bad....the fear of what it will be is worse than the treatment.

I found that there's a wide variety of thoughts and practices on pump pressures used during infusions, and I was actually hoping to see more discussion going on with this from everyone. I believe it to have alot of importance with side effects, but also something else that hasn't been discussed alot and that is the fact that there have been experiences of heart attacks sometimes during, and then up to two weeks of having IVIG's. From what I've read, side effects have been reduced by pumping the IVIG at slower rates, rather than rushing through the infusion. I know that when I had my infusions, I saw wide varities of pressure settings, from starting slow( 40) and ramping up every half hour, to setting it at 110 and letting it rip.

So, while we can drink plenty of water, take premeds, the importance of pump pressure needs to be discussed with your Neuro, and he needs to instruct the person administering the IVIG.

Kathie, You can always try Claritin if Benadryl makes you too drowsy. The problem with Clairtin is that it's a 24-hour drug.

When you are having the infusion, always let the nurses know if there are any issues. And don't hesitate going to the ER if you get a severe headache, which might indicate meningitis.

Fortunatos, Actually, most Americans have their IVIG done in infusion centers. There are very few people who do Hizentra (self-administered injections) or home IVIG. We put our pants on the same way as people in other countries do too. :cool:

I hope the IVIG goes well. You've gotten a lot of good advice.

Annie

The. Nurse that came to my house did not use a pump. Maybe that is why it was better for me.... I don't once. This was my first. I hope I get this same nurse every time!!!

Regarding the pump pressure, you will find the rate that works best for you. I believe they will start you at a very low rate until they figure out what rate they can safely run you. When I first started 8 years ago, they ran me at 50 units/hour and gradually took it to 125/hour. As time went on, I gradually increased to 200/hour, but over time I started having mild headaches after treatment. I now have them run it at 175/hour maximum and pretreat with benedryl and tordahl (an amped up aspirin) in my IV. Since I use a high dose (1 gram/kilogram of weight) twice a month instead of a lower dose (.40 gram/kilogram of weight) 5 days in a row monthly, the infusion takes about 6.5 hours. I get the same dosage overall, just handled differently. You will need to work with your doctors and infusion nurses to figure out what works best for you. I believe what you start with is just that, a starting point and your dosage and settings will change over time.


Good luck!

IVIG veteran
 

Hi Kathie,
I have Inclusion Body Myositis [too rare for many doctors to know about and no remedy] and Non-Hodgkin's Lymphoma, besides too many other things for this 77 year old person to remember. I am currently having IVIG infusions once a month for cellulitis, for arthritis, and to build up my immunity for the IBM and the cancer. The infusions I receive are generally tolerated quite well, although I have had reactions so I am given Tylanol in pill form, and Benydryl added to the infusion before they start the IVIG flowing. I have a port so they don't have to stick me so often [I am not a lover of needles!]. I receive the new version of chemo for the cancer every 3rd month. Those infusions generally take 6-7 hours. That can be a long day. So I am well versed in visiting the Infusion Center, called the Outpatient Pavilion here.

Generally you will feel tired but okay after the infusion. I did have a high fever after one of the infusions [103degrees], and spent 3 days in the hospital while they tried to figure out what caused the fever. No definite proof pointed to the IVIG, but that was the listed cause. Generally, though, I feel okay afterward. Unless you are hankering for a few days vacation time, and this certainly qualifies for a bit of sympathy, you should be fine to return to work right away. I have gone out to lunch a fime or two following the infusion, so think positive thoughts.

Take something interesting to read or to work on with your hands or a good movie to watch that you have been wanting to see. I have taken my laptop a time or two, a DVD player and a movie, current magazines, or some crafting I like to work on.

The important thing is to not worry about what is going into your veins, but to concentrate on the positive effect the infusion will have on your disease. Positive thinking is a powerful force as we battle the illnesses that plague us. Tell everyone to keep you in their thoughts and prayers, and keep yourself there, too.

Many good wishes to you as you continue the process, and a hug from an IVIG veteran as well.

Annie B.