When I marched (okay, crawled) into my infusion appointment Friday, I carried with me a two-page outline of side effects that I hoped to have addressed. I was out of it due to a lack of sleep, an over-abundance of pain and the anticipation of another iv. I handed my list to the nurse who took one look at me (ashy white color that I was) and the list (two legal sized pages) and sprinted off to get the doctor. We had an excellent pow-wow with both nurses, the doctor and my family. I’ll just refer to all of us in this blog as the “team” so I can get this typed out with limited confusion (hopefully) to the reader and to myself. What came out of this meeting was an adjustment in strategy and an adjustment in my thinking.

The “team” came up with some excellent strategic shifts which I believe will make taking Ampligen a whole lot easier. The first change is that I have had the infusion rate increased to one hour. The second change is an increase of supportive medications to help me through the challenges that the first months on Ampligen present. The third change is the option to lower the dose of Ampligen to  whatever dose is more tolerable and then (maybe) work back up to the 200 mg level. (Hemispherx is very liberal in their dosing protocol. I could drop well below 100 mg and work up from there if I want to. I have chosen to remain at the 200 mg level for now.) The fourth change (which I believe is the most important) is my change in attitude going forward from here.

Rather than trying to be stoic and refuse to swallow the pills I have been prescribed I need to take the pills when I need them. (Novel idea, huh?) I was so afraid of my system becoming dependent upon pills (pain pills especially) that I wasn’t sharing with my family or my doctor just how awful I felt. I am now learning to be open to the idea of medications to treat side effects being used when problems start to arise rather than waiting to be a 10 on the pain scale or being so dehydrated that I can’t function.

So, I am now taking a ppi, a 5-HT3 antiemetic, Tylenol, a strong  opioid, a secondary pain medication specifically for migraines, the claritin (which still works quite well as an adjuvant for the bone pain), caffeine for the sleepiness produced by the opioid (I never even drink caffeinated sodas so one can of Coke totally wires me), I have lidocaine patches for those pesky lymph nodes and a rx for a mild diuretic.  I may feel like I am a living pharmacy, but I am a comfortable living pharmacy. The next step is to get me to be a walking pharmacy and after that I’ll become a jogging pharmacy. My ultimate goal? To be a runner with no medications. In the meantime, I’ll take the medications that I am supposed to when I’m supposed to take them. And I’ll be glad. And possibly sleepy.

I haven’t been able to find another Ampligen patient who is losing hair like I am. My doctor said I was the first one in the office to ever lose any hair. This is great news for those of you considering Ampligen treatment because it is apparently extremely rare to lose your hair (as are most of my side effects), but it sucks for me. I’m still losing one handful every day. If Ampligen ever makes it into one of those drug-store pill books I think the “rare side effects” paragraph will probably be cut and pasted from this blog. (At least I’ll be famous.)

 After research into other drugs similar to Ampligen (like Interferon) I have decided to cut off the majority of my hair in the hopes of sparing the rest of my hair. Long hair falls out faster thanks to the added weight. Since my hair is more than halfway down my back, I will cut off close to seven inches. This will give me a long bob. I also won’t be coloring it, blowing it dry, using heat, using products, washing it often or even brushing it often for the next year. I’m going to look simply awful. On the bright side, I have a decent chance of experiencing a hair color and texture change when it regrows. So, I am hoping (and praying) for a return to my childhood white-blonde locks and a straight texture. Why not dream big? In the meantime I am going to be on the hunt for silk scarves in pretty colors. I need something that says I’m extremely girlie, but don’t mess with me because I will take you down. Maybe pink camouflage?

Sophie

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