I just read Cathy M's letter and your response
Ed. First of all, thanks so much for responding so quickly to
my first letter. And second, the blood bank told me had I taken
Soriatane, I could give blood after three years. Tegison warrants
a "permanent deferral" according to their book. If
Ed's Response: Thanks for bringing the whole matter to our attention, Jane. In fact, the trouble with Tegison was published, had been out there, on the net and in the product literature, but it had to be sought. That Soriatane has replaced Tegison indicates to me, at least (my recurring unbridled optimism) that it was probably never considered an ideal product. Maybe the FDA shouldn't have approved it. Maybe we should look at the whole incident as a case of the industry policing itself. Some might sayobviously the FDA did"So what's so bad about not being able to give blood for the rest of your life?" As a trade-off for less P-suffering, many people aware of the trade-off would have opted to take it anyway.
But rest assured, you and I were not the only two flakers out there surprised to learn after the fact that blood-giving-less-ness was a consequence. And that is the "much confusion" you refer to. The problem seems to be worse than the manufacturers proclaimed. According to Cathy M., the product literature said no blood-donating for three years. Now, your experience is you don't get to give it EVER AGAIN. Perhaps somebody is playing it safe; perhaps the manufacturers got away with something they corrected (eventually) with Soriatane. Possible litigation here? Who knows? But you can be sure the pharmaceutical has deep pockets to sustain a fight.
We are not used to having such heinous options except in life-threatening situations. Doctors bear some of the responsibility for not ensuring we are aware of the consequences, but often we don't hear them. And, of course, Dr's trusting what the pharmaceuticals have to say would have never warned you that blood donating may NEVER be possible after taking Tegison.
Anyway, it's over for all but those, like you, who are learning too late that they can't give blood because they once took Tegison. I'd like to see NPF follow up on this, determine for us if your experience is now "universal." If it's true, categorically, that because you took Tegison your blood should not be donatedever. -Ed