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kathygirl

Immunoglobulin Treatments

3 posts in this topic

HI all,

I would appreciate any information you may have on immunoglobulin treatments.Have you found them to be helpful? Also anything special you do to prepare for the treatment?MY doctor says it takes 2 days once a month.How do you fill the time? What do you take with you?Thankyou for your advice.Kathy

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Kathy,

 

I have been getting immunoglobulin (IVIg) treatments for almost 2 years. The first three were once a month, then we stopped and started back up again 3 months later because I needed them. I now get them every 6 to 7 weeks. The first 3 treatments were 5 days, 3 - 4 hours per day. I'm now at 3 days, about 5 hours per day. That's the fastest my rheumatologist wants to go. Your total dose must be small if you are only going to be there 2 days. Your doctor is probably checking to see how you handle it and how it helps you.

 

As for me - it's the only treatment that I get that helps me every single time. In fact, the boredom and disruption to my week is so worth it. It has eliminated the horrible fatigue that we suffer and because I also have polymyositis, it has kept my muscle enzymes low (CPK) allowing me to be able to build my strength back up.

 

As far as preparation - I take a book, my portable music, and sometimes work. Wear very comfortable clothes and if you are cold natured, wear warm clothes. Getting a bottle a room temperature liquid dripped into your veins can put a chill inside your body. Occasionally I get a headache afterwards, but nothing that OTC headache meds can't knock out. Some doctors will prescribe a pain reliever prior to the treatment. That's the only side effect I've ever had.

 

The main thing with IVIg is that they start off very slow. Feeding too fast can cause serious problems. Your infusion nurse will increase the drip about every 15 - 30 minutes for the first couple hours until you're up to maximum drip. They'll also check your vitals to make sure you're o.k. Other than that, you have lots of relaxation time. I sleep a lot and read alot.

 

Good luck to you. Let us know how you do.

 

Big Hugs


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Janey thankyou for your reply.I am looking forward to this treatment and at the same time trying to not get my hopes to high.I also have polymyositis if this treatment helps that its a bonus.

Im sure I will meet lots of interesting people and that will help pass the time as well. Thanks once again Kathy

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