Rituxan and Rest, Patient conf. in Arlington

[gurs]

I usually have terrible problems with the 150mg of solu medrol and my anxiety, but I think as soon as they start the Rituxan, you get super-tired.

Just hope the 2nd infusion goes as well and makes me feel better, as i will give an update.

gursie

[ktfabian]

I've been off-line with pneumonia, so I didn't see this come up again til today.

I've been getting Rituxan for about 2 years.  I go every six months for 2 infusions two weeks apart as long as I have no infections brewing. My only diagnosis is Sjogren's and my insurance, Blue Cross and Blue Shield of Alabama (yes, I live in PA!) covers it.  I'm sure there was some sort of precertification process.

Gurs, I can't believe they didn't run yours with saline!  Before my Rituxan starts, I get 2 tylenol, IV benedry, IV zantac, solu-medrol (all with saline) and then the rituxan.  I take Ativan  (which I have a prescription for because of anxiety related to my son being in Iraq) at the very beginning and usually get a good snooze in while the Rituxan runs, which takes several hours.

I'm overdue again, so as soon as I get the clearance from my GP, I'll be getting another infusion.  I can tell I need it because my daily Sjogren's headaches are back.  Rituxan is the only thing that has ever gotten rid of the headaches.  I'm glad my insurance approved the infusions because the hospital where I have them done charges over $20,000 per infusion.  Of course, my insurance doesn't pay that much, but I couldn't believe it when I first saw how much they charge.

I hope the Rituxan help you.  For others interested in Rituxan, don't assume your insurance won't pay for it - it never hurts to check it out!
Tracy

[gurs]

Oh, that's great info tracy!!! I had my first infusions a few years ago right after my hysterectomy and did ok with it. I had the prep basically as you..the tylenol, the benedryl, and the solu medrol..did ok, but after 6 months, I became extremely ill and Im not sure if it was because of the rituxan was wearing off or what. Im glad to hear it has helped your headaches. I have terrible head pain.
I cant stress enough how important the prep is, and the slower they go, the better. My IV saline was not on my last order (1.5 years ago) so they didnt give it to me, and when I asked, they said i prob didnt need it??? I was stupid and let it go. I had extreme problems. I couldnt swallow at all and the skin on my mouth, lips, all fell off..seriously.
If anyone has any infusions, please, check the order yourself a few days before you have your infusion, and know what your supposed to be getting. If you need a anti-nausea, it has to be on the order or they wont give it to you. I go back on the 30th for my 2nd..hopefully, I can stay healthy to get it. I know the 2nd infusion is very important.

thanks again tracy...great!

Gursie

[irish]

Just a little more info about infusions. If you get all your pre infusion meds IV make sure that they do IV saline flushes between medications. This is usually in a syringe and they give 5-10 cc's or so. This is necessary as many IV drugs are not compatible and need to be separated by another fluid.

I always get 100 cc's of saline flush at the end of my infusion. At the cost of my drug I am sure it helps to clear the IV line of that last several hundred dollars of medication.

Also, every time you have an IV drug you will notice that they do the IV saline flushes---have to separate the infusion product from any other drug also. It makes for a lot of IV stuff. I got so stoned on my first IV benedryl---told the nurse I was so stoned and literally konked out for 2 hours. Scared them so bad that now I get my benedryl in 100cc's saline drip. Goes much slower and after about 15 minutes I get sleepy and my 1/2 hour I am sleeping for much of the morning--which is good cause I need the sleep. IRish

[gurs]

for those who had Rituxan, wow, i cant remember, but i feel worse...my joints are sooooo bad. Bad flu-like feeling. Hope this changes soon!

[Chickpea]

Hi Gursie

Sorry to hear you're feeling so bad today.  Hope things change for the better soon.

Thinking of you - Chickpea