Hi Mrs. D. About the Dovonex, Alan had that when he first got the psoriasis. Did NOTHING for him.

The A&D is doing more good than any other psoriasis meds he has ever taken. I have no idea why. I guess because it's a thick ointment. For his leg lesions, I mix it with the clobetizole and WOW, it seems to be doing it's job.

OKAY, HERE'S WHAT THE INFUSION COMPANY JUST SAID!!!!

Spoke to PJ, he said "I have to check with his doctor to see if she wants the two day a month, or how many days a month he'll have it". I said "what do you mean two days a month, it's not one day at a time"? and he goes: "no, we have 2000 IVIG patients and many of them have two days a month and some even have 5 straight days of infusion. We have to call up his doctor to see what she wants him to get". I said "okay, fine". Then he asked me exactly what Alan was on in the hospital (Thank goodness for these boards), I told him "hold on I have to go to the neuropathy boards, look up my old thread and I'll tell you". I did and I gave him the information. He said the following to me "Alan is prescribed pre meds, tylenol and Benedryl (2 x a month), (that's when I found out he might be having two straight days of this).

Then he said "Alan will be getting 30 grams over 4 hours. I repeated this just to make sure and he goes "yeah, we go slow". I said that's fine".

And they come on Saturday and Sunday. And they'll work around any schedule we have (like we have a wedding on June 8th).

Since we don't know if this will knock him out or anything, this is just a wait and see approach to this infusion thing.

I can't imagine what his psoriasis will be doing over the course of this treatment. Small price to pay if this stuff actually does what we hope it will do. I don't look a gift horse in the mouth believe me.

He explained about the meds being delivered by Fed Ex and how I refrigerate everything and take them out two hours before the nurse gets here.

Now here's a good example of how many different bits of information I got from the boards here and from the guy from the infusion company. I just printed out the post that said:

"IVIG should NEVER EVER BE ADMINISTERED BY A GRAVITY DRIP (A bag on a hook without a pump). That's outlined on every IVIG prescribing information sheet I've ever seen." That's a direct quote from the posting.

So now I've got PJ on the phone, (he's very nice by the way), and I thought I would gently ask him "This comes with a pump, right?" and he goes "not always". I politely told him that I go on the neuropathy boards and many people have been through IVIG and I read to him about the NEVER USING A IV DRIP thing. and he goes: "These people might not know this but we don't always use a pump, we have 2000 patients and 1500 of them don't use a pump". I couldn't see myself saying "but the people on the boards said one thing and you said another". I don't want to get off on the wrong foot here, but now we have two completely different scenarios going on here.

And because we don't know what is going to arrive by fed ex, I have no idea if there will be a pump or no pump.

Now Alan asked me a question and I'll run it by you. Alan has a slight hearing problem s he (under the advice of his doctor), listens to tv with his headphones. If he didn't do this, I would go out of my mind with the loudness in the apartment. That's how loud he would have to jack up the tv. He has a 20% hearing loss. So he's fine with the headphones and has been listening to tv for years like this. He doesn't need a hearing aid for everyday life and he hears people talking just fine. It's the tv that's across the room, that he needs the headphones for. He asked me "what if she wants to watch tv, it's impolite for me to put the headphones on and I won't be able to hear it if I put it low" This is what I told him and correct me if I'm wrong, okay???

I said "Alan, this is a visiting nurse, she's from the service who sends out visiting nurses. She is not there to watch tv with you, she's there to monitor the infusion. Your job is not to entertain her. Of course, I'll offer her coffee and muffins, but if she wants to sit and read or do needlepoint, whatever she'll do it. If she wants to watch soap operas or whatever, then you put the tv at a normal level for the 4 hours and you just sit there and read."

Am I correct in this. I mean, if he puts the tv on (without the headphones), it would blast anybody within hearing distance into kingdom come.

So I believe he could just sit there with his headphones, watch his tv, and she'll do whatever visiting nurses do when they visit people during their infusions, am I correct? thanks for helping me with this. We don't want to step on anyone's toes here. This is a first for us.

Melody