Paul, male, 48, Massachusetts
- Overall Rating
- average of all patients
Intravenous Immunoglobulin (IVIg) infusion therapy is used to treat autoimmune diseases. It suppresses your own antibody production and replaces antibodies in your body. IVIg is a wide spectrum of different pooled antibodies collected from thousands of donors. I was getting it for treatment of pemphigus vulgaris, an autoimmune disease that causes blistering of the skin and the mucous membranes. With pemphigus the body develops antibodies that attack the protein the binds the top layer of the skin or mucus membrane to the lower levels. The idea behind the treatment is to suppress these antibodies so that the protein can function properly.
I went to the office of my doctor, a dermatologist specializing in blistering diseases, for the IVIg treatments. In the beginning, I went every three weeks, then the sessions were spaced out a bit more. The individual treatments take a while because the antibodies being introduced are a large protein load to your bloodstream so the infusion must be done relatively slowly. My treatments required 3-4 hours each day for three days in a row. (I sometimes did two days of treatments in a week for 4-5 hours per day.) I had a total of 15 treatments.
My treatments were given in a room with about six lounge chairs in it. I sat down and the nurse would first give me Tylenol to try and prevent or at least decrease the severity of the headaches that are often a side effect of the treatment. She also gave me Benadryl to prevent any possible allergic reactions. The Benadryl made me tired and during later treatments I requested not having it. The nurse then gave me an IV. Sometimes I had a semi-permanent IV portal put in so I would not need a new IV for my next treatment, but usually I got a new IV each time. Then they hooked me up to an IV bag filled with the immunoglobulin. This was attached to a pump to regulate flow. The pump was portable, so I could walk around with it, make cell phone calls, and us the bathroom. Low blood pressure is one possible side effect of this treatment, so they took my blood pressure every 30 minutes. I would mostly lie in the chair and sleep, read, listen to music or do some writing. I ended up needing to urinate quite a bit because of the treatment (you get a lot of solution through the IV). Also, they encouraged me to drink a lot to hydrate.
Once the infusion was finished, they took my vital signs and would sometimes draw blood. I then went home. After each treatment, I was overwhelmingly fatigued and had a headache. Also, I felt general malaise, like having the flu. The next day I also felt like I had the flu, and I still would have a headache. It generally took 24-36 hours to feel better.
Bring liquids with you to the treatments and drink a lot to stay hydrated.
Plan a recovery time of 24-36 hours after each treatment.
Keep current on pain medications for headache following treatment; consider asking your doctor about round-the-clock Tylenol dosing.
Get educational counseling about blood products (like IVIg) and any risk factors associated with them. They are screened and purified, so they are theoretically safe, but it still worried me so I sought assurance.
Talk to your family about your treatment and reach out for their support; this can be a doubly tough time as you deal with the disease as well as the treatment, and support helps a lot.
- posted by HealthAngle July 23, 2007
All stories on HealthAngle are doctor-reviewed.
Click here to learn more.