Well, it’s good that the s/e’s are wearing off?

January 3, 2009 at 4:16 pm

While in the Hosp. I’d the opportunity to meet many in there with Multifocal Muscular Neuropathies. AND, they all were surprised to find a CIDP’er in their midst? Asking them about the effects tho, every single one of them agreed that they would keep infusions up! Even tho it mite give them the ‘sick as a dog’ and flu-like side effects, because they were able to FUNCTION the rest of the month!
That said? You never get to talk to those who quit. Nor ever find out why.
Each of us has to determine IF this is plain old WORTH IT ALL!
I don’t know about anyone else? But I went into this semi-educated, and became VERY much more educated than I ever thought I would have to be about the whole thing. I was educated enough to know that it might mean a commitment tho of time and money and some sacrifice to get and be infused on a regular basis. Given other medical issues, this was the only sane way to go in the long term. Tho expensive for all. It’s a gamble we all take in our choices of medical treatments and therapies. I sort of feel that I’ve won? At least a little?
It’s good that the Epi was on hand – it always should be! ALWAYS! And I too would be on personal RED ALERT! with such a rash. Do call your doc on Monday and relate ALL! ALL! Leave nothing out. To repeat again, there ARE preventative measures in terms of pre-meds that can be done to avoid this in the future. Now, it could be also that you have one whopping big bad immune issue that needs to be beaten down thru multiple whopping IG infusions and maybe other treatments. I for one? Despise those whopping things! But I understand their necessity at times.
I do have to ask tho…200 GRAMs or MG’s????? Honestly, we are talking the difference between pints and gallons here! While pints can seem like gallons at times? Not quite the same.
And AH…! You are also getting PE and Solumedrol… That could explain what’s gonna be a likely lower IVIG dose than for one not on the other things too.
Just hang in there for now? Fudge! What have you got to lose at this point? No? Hope always, and never be reluctant to ask questions! Someone has to have an answer somehow.