You couldn’t make this stuff up. Well, you could. Someone did and that’s what is mind blowing. My husband has joked for a long time about those tv ads for medications where they run off the possible adverse reactions. If you really listen to them, you can’t help but ask , given that kind of possible reactions, who would take the stuff. Like isn’t the problem less distressing than the side effects?
For the past few months, I have been having testing in order to begin a drug which is meant to help stop my white blood cells from attacking the myelin sheath on nerves in the brain and spinal cord. Now there are a number of meds. I took 2 different ones before this. Those were injections. This one is a capsule. Feeling much like I did when I started the others…just off kilter, dizzy, weak,nauseous in waves,and who could forget body aches and diarrhea?AH the fun stuff. Of course the vital signs are all good. Now here’s the cute part. I am taking this for a chronic progressive disease which carries, dizziness, trouble walking and talking, nausea, muscle weakness. The cute part? These are symptoms common on any given day in this land of ms. That’s smack dab the main road in Neuroville. There’s the side effect of flu…seriously flu? Flu-like symptoms? Oh no the real flu because this one lowers your immunity by locking up those WBC components in the glands. Great. Oh and what’s that fine print tucked away in the middle of the pamphlet where most people have stopped reading and is the only place I saw it mentioned? Oh lymphoma in the complication section…or was it the adverse reaction section, I can’t remember. But wait they follow that with no statistics at all- none on occurance because it couldn’t be determined how much of a factor the med might have been. Well let me think, we’re stopping a percentage of lymphocytes and neutrophils from leaving the lymph glands, taking them out of the peripheral circulation. so there are fewer available left to attack brain and spinal cord. Like how dangerous could that be,blocking up lymph glands? Ha! Don’t get me wrong. Lymphoma is serious stuff. I was a nurse. My son battled Hodgkin’s Lymphoma.. It’s just the way they seem to tuck it away, hidden away.like a dirty little secret they want to downplay. Give it all to us. , all of the data so we can make a fully informed decision.Be clear about the numbers of people you’re talking about. Using small sounding per- centages over the how many in 10 makes it sound like they’re so rare, The deaths attributed to the drug being unclear because of a comorbid condition or a particular med. Hmmm I think they should be included in the full disclosure. Well business rolls along as it does.. Sick people seek what they can that gives them hope. Sick people try what they can. They try what gives their family hope, what makes their family believe in them. That may sound unlikely- but it honestly is.