about 3 weeks later

I would say that my pain level is down from before I started IVIg therapy. I don't need Oxycodone in the morning. I haven't been needing my full daily prescription most days.

I have been back in the gym working out 2 hours a day, 3-4 days a week. In additional to weight lifting, this includes treadmill walking in my aerobic zone for 45 minutes or so. This is another indication that things have improved. I look forward to getting back on my bike, cycling again, as soon as the weather warms.

the day after

This morning my pain level was 6-7 which was hopeful but is 7-8 now at 7:00 pm. I just took 10 mg of Oxycodone to try and bring it down. The most painful area still radiates from my left heel and shoots up the back of my leg, though I have pain on the tops of both feet as well. Sometimes I get this pain when my feet are swollen but they aren't right now. I hope not to need more Oxycodone tonight.

I had a small headache this morning, but I didn't treat it except to continue drinking a lot. It went away by later in the morning and it's still gone now. I didn't take any more Predisone after the 60 mg total last night.

IVIg second dose

It's 11:00 pm the night after my second IVIg dose, taken on consecutive days. I talked to Dr. Shapiro about my pain level being so high (8-9) the morning after my first dose and he said that it was not unusual. I was hoping for immediate relief but that may not be how it plays out.

A headache started before I left the infusion center today, which could not be reduced with Ibuprofen. I took 20 mg of Prednisone, and 2 hours later another 20. After an additional 2 hours, the headache hadn't had any significant improvement, so I took a third 20 mg dose. Then the pain finally started to dissipate.

I left the center with pain levels 8-9 in my left heel and the top of my right foot. I waited until night before taking any Oxycodone to see whether I would need it or not, hoping the pain would decrease from the treatment. I took 10 mg followed by an additional 10 mg 90 minutes later to bring the pain down to where I could walk without wincing.

IVIg notes

I forgot to mention in yesterday's post about my current pain level. It was 6-8 the day prior to starting IVIg therapy without any narcotics. Last night, after my first treatment, it was 6-7. This morning it is 7-8 and I am walking with a cane. I haven't noticed any dramatic effect from the treatment.

I have not experienced any side effects from yesterday's treatment.

it's been a while

A quick update:

I went off Morphine again in September and seized Sept 11. After going back on the day after, I worked with Dr. Schakkel to taper much more slowly. I am off Morphine now and got my driver's license back last weekend.

I was on Coumadin until about 4 weeks ago when I noticed a lot of blood in my urine. A CT scan showed a clot in my left kidney, which I passed later. That was excruciatingly painful. My urologist Dr. Hackett scoped my bladder and left kidney. He said my kidney looked almost completely bruised inside, just like my ankles. He said that if I go back on anticoagulants, I have a high risk of bleeding and clotting again.

As I blog now, I am sitting in an infusion center getting my first 70 g IVIg treatment. I receive another tomorrow and then another in 4 weeks. We will re-evaluate at that point. I expect it to take 6 hours or so to get that high a dose in. Headaches are the most common side effect, mostly due to dehydrating effects of the IgG antibody.