Sunlightbay

I had another Igg infusion treatment yesterday, which was my fourth. When I started these treatments, the doctor and I agree that I would have 6 treatments, one each month, to see if they made me fell better.

I felt bad yesterday when I went to get the infusion. As usual, the infusion took over 3 hours; I didn’t notice any big change in the way I felt during the first couple of hours of the infusion, because I was already feeling bad. But, I felt progressively worse toward the end of the infusion, and by the time I was finished, I felt really bad. I had fever all afternoon and stayed in bed.

I have an appointment to see the doctor next week; I suppose he will evaluate how the treatments are going and whether to continue for two more treatments. Unfortunately, I’m not very confident that the treatments are helping very much. For sure, the treatments did not provide a “cure”. I have good days and bad days. After the treatments started I thought I could see some benefit. However, I expected there to be some placebo effect. When the primary symptoms are malaise, burning eyes, mild headache, tiredness, and generally “don’t feel good”, it’s hard to evaluate improvement from day to day. I still have good days and bad days, but for a time I thought there might be fewer really bad days.

However, this month there were some days when I didn’t feel like doing anything. Yet, I had some pretty good days this month and had some good bike rides, which for me is a good gauge of how I feel. But, Wednesday and Thursday of this week I didn’t feel like riding or doing much of anything. The past few days have been particularly bad.

On Friday I had my first infusion of immunoglobulins. I was told to show up at the Infusion Center at the Med Center outpatient area at 8:30, and I was there on time. I don’t know what I expected the Infusion Center to be, but it turned out to be part of the Cancer Institute, the place cancer patients go for chemotherapy. Ugh. I checked in and had a seat in the large waiting area. Although there were more than 50 empty seats, the two sickest men there came over and sat next to me. One had a mask and the other one coughed. Ugh. Before long my sister came and I moved to sit with her. She was there for a chemotherapy treatment for ovarian cancer.

At about 9:30, I was called to go back to the infusion area. I was hooked to an IV, and given two Tylenol pills for the headache I was promised. The nurse first drew blood, and then he started the infusion drip. The Doctor’s order was for the infusion to take three hours, and it did. The Doctor came by to check on me about midway through the treatment.

The bad headache and flu-like symptoms started for real about half-way through the process. The headache lasted for the next several hours but by the next morning, I was back to “normal”. I believe I feel a little better today but am not “cured” yet. It could be a plecebo effect. I didn’t expect to see immediate results.

After not feeling very good for over a year, and seeing the Doctor umpteen times, I have been diagnosed with Common Variable Immonudeficiency (CVID). I will start a treatment tomorrow.

I haven’t been acutely ill, but sick enough that my daily activities were affected. From time to time I feel like I’m coming down with a bad cold or the flu, but I never do. A little bit achy, eyes and nose burn a little, a little light-headed, more tired than usual, some headaches, tingly skin. Sometimes I would feel bad for several days in a row, during which times I didn’t feel like doing anything. Recently, the bad days are becoming more frequent.

In March of last year I crashed my bike after becoming a little dizzy. That caused me to have a bunch of tests, mostly related to my heart. I had a stress test and wore a heart monitor on two occasions, once for a month . All the heart-related tests were normal.

But, when I continued not to feel good, I kept going to the Doctor. I’ve had just about all the bloods tests the Doctor can think of. Nothing seemed to be abnormal. My Doctor once commented that based on my bloods tests, I’m one of the healthiest people he knows.

I also saw a neurologist, because when I’m feeling bad, my skin tingles all over (you know that’s not normal). I thought I might have neuropathy. But, the neurologist said no. However, she offered no explanation for my tingly skin.

When my regular Doctor couldn’t find anything, I went to the Allergy/Immunology Clinic in February to be checked for allergies. No allergies. The Doctor at that clinic ran some blood tests to check my immune system. One of these tests showed that I had low immunoglobulins/antibodies. That result prompted additional, more-detailed tests of immunoglobulins. I was tested for several antibodies, then given pneumonia, diphtheria, pertussis, and tetanus vaccinations. After a month, I was retested for the antibodies, which normally will increase after vaccination by up to 4 fold. Mine didn’t increase much at all.

These test results are consistent with or are diagnostic for CVID. The usual symptoms for this conditions are frequent infections, such as pneumonia or bronchitis. I haven’t had any infections (thank goodness); I didn’t even have a cold this year. But, a small percentage of people don’t show those symptoms. Perhaps, I’m among the few who don’t exhibit common symptoms (always an outlier). The treatment for this condition is twofold–low level doses of antibiotic and/or infusions with immunoglobulins.

At first, I opted for just taking the antibiotic, because I didn’t like the sound of receiving “blood” infusions. I started the antibiotic treatment about the end of March by taking 500 mg of Azrithromycin once a week. The Doctor said if I started to feel really bad, I should call and he would prescribe a Z-pack (Azithromycin for 5 days). About a month ago, I started to feel bad, and I took a Z-pack. I didn’t start to feel better, so I took a second Z-pack. When I still didn’t see any improvement, I called the Doctor.

I saw the Doctor last week, and we decided that I should start getting infusions of immunoglobulins. I stopped taking the antibiotic, since apparently that did no good. I will have the infusions for six months to see if I start to feel better. The Doctor’s staff checked with the insurance company (Medicare) to get prior approval for the treatments. I imagine the treatments are pretty expensive. They received approval for the treatment this week, and I will have my first treatment tomorrow. I will go to the hospital and receive the infusions once a month. It takes about 3 hours to receive a dose.

Of course, I am a little apprehensive about receiving an infusion of someone else’s body fluids. But, the Doctor assured me there is very little risk involved with the treatment. He said the blood that the immunoglobulins are extracted from “do not come from the Red Cross”. The infusion preparation is developed by a drug company. It is prepared from blood of over a thousand individuals from all parts of the country to ensure that a wide range of antibodies will be present.

I’m encouraged about receiving the infusion treatments, and I’m hopeful that I’ll start to feel better soon.