Today I thought I would write an update on how my IVIG treatment is going. The graphic above is a good description of the past week or so. I have felt pain so terrible that it almost doubles me over. And, I have felt pain in ways that I have not felt since before I started Cytoxan therapy three years ago.
***I have had two IVIG treatments so far. The third will be next week. I receive 1 gram per kilogram of weight diluted and given over two days by IV.***
They are four weeks apart. My biggest observation is that the good effects of this treatment do not last four weeks which is the interval between doses.
***The treatment does help. After a few days, I seem to get a burst of energy and reduced pain. I am able to go through a day with less rest breaks and stay up later at night. I am even able to move around much better. And all pain, muscular-skeletal and neuropathic is lessened. This “better” period lasts about 10 days.***
Then, a deterioration begins and a week before the next treatment I am back to a point before any treatment started. Lots of pain. Lots of overwhelming fatigue. Lots of stumbling around when I try to get up. Torture!
I plan to vocalize my experience next week when I go to my doctor’s office for the next round of treatment.
***I think it would be better to either receive more IVIG, i.e. a larger dose, or receive treatment at 3 week intervals instead of the present 4 week interval.***
I’m still pretty good at covering up how bad I feel. But my wife can tell that the last few days have been bad. I know all of us with whatever chronic illness we have try our best to put a smile on our face when we really want to cry.
Well, that’s the treatment update. Good news in there that I get 10 better days per month. Maybe that’s all I can expect.
***I hope that we can come up with a treatment plan that helps just a bit more. Because after those 10 better days, I get about a week of pure misery and pain levels that are off the chart.***
But I will fight and stay strong. You stay strong as well.
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