Brainstorming time

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SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 2/16/2012 8:08 PM (GMT -6)   
Aight, as you know they want me to start Rituxamab and what the site says is very scary.
 
So... I'm writing (ok Typing and gonna take the laptop) Questions that I should ask my doctor at my appointment
 
Lets come up with a whole bunch of them!
 
I've came up with 16, but I'm aiming to be the educated patient making a serious decision.
 
 
Any more questions youi guys can think of?

Blue Wisteria
Regular Member


Date Joined Sep 2010
Total Posts : 39
   Posted 2/19/2012 7:29 AM (GMT -6)   
Hello, I know the website on this drug is scary....but I get this infusion every 4 months and have had good ressults. One thing that surprised me was the length of time it takes to administer it. Mine is approx. 8 hrs and I can not drive due to the amount of iv benedryl you get.............makes you very tired.

Good luck and let me know how it all turns out for you.
Wishing a good day for all,



Lupus, Sjogren's, Athsma, Diabeties and RA

Plaquinal, Immuran, Rituxian, Pred, Cymbalta, Singular, Theophylline, Advair, Diovan, Mobic, Prandin, Lantus and Moraphine (as needed)

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 2/20/2012 12:56 AM (GMT -6)   
Blue,

Wouldn't recieving benedryl mask any kind of allergic reaction? And, do they have to give it by IV? I have the wierdest problem if I am given benedryl by IV.... I get high and forget to breathe. Ironically, I can take a pill with no problem though. I was told it was the way it hit my bloodstream I can't handle. I have weird things happen if anything by IV is too fast, not high enough with the water. I remember at my last trip to the ED, they tried giving me zofran by IV... well I scared the nurse. I was watching TV as she was doing it then I just started screaming. She asked what was rong, I said "PUT THE FIRE OUT PUT IT OUT" she stopped pushing the Zofran in and it took about 10 minutes for the feeling to pass. Now I love the morphine by IV, I thought I was in a hospital nursing and I told the doctor to help me calm down the babies and change diapers. I won a longer stay when they found out I hallucinated. I'm wondering what the heck would happen with rituxamab. I'm going to bring that up to the doctor on Wednesday. How long have you been on it?
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

luk4dgudnit
Regular Member


Date Joined Sep 2011
Total Posts : 26
   Posted 2/22/2012 6:04 AM (GMT -6)   
Hello, when I first began to post on HWF, I didn't share my entire story. I visited my doctor today and left with intense fear. Please read the following and if there are any suggestions please feel free to hit me with whatever you got. Crazy, weird but true. Many years ago I was told I may have Lupus. After feeling better I never really looked into the probability of Lupus. But since then I have encountered numerous health problems.
 
Sorry for this being so lengthy but I am seeking answers. I have endured gall bladder removal, several egd-ercp procedures,pancreatitis, hepatitis, thoracentesis for fluid on lungs, four breast lumpectomy,open heart surgury due to pericardial tumor, several kidney infections, several bladder infections, lesion on right kidney, rashes, migraines, mouth ulcers, severely dry, burning stinging eyes, puffiness/swelling of joints, achey joints, carpel tunner, tmj, itching for no reason at all, extreme hair loss and confusion. I also have spinal stenosis, pinched nerves and three bulging disc and pain radiating down my left leg.
 
 Recently, I had a doctor who stated she would make every attempt to get to the bottom of my health issues. After blood work returned 1:16 titer, speckeled among other positive ANA results, I was told again 21 years later that its Lupus. Once I was referred to a Rheumy, I was told it may not be Lupus. When I showed pictures of blue fingers, hair length differences, asking about the pain, I was then diagnosed. Now after all these years I am 43 walking a cane from time to time, flank pain, urinating every hour and I’m scared. I’m now taking Prednisone, Pamelor, Prednisone, Imitrex, Famatodine, Vitamins, eye gel, Diclofenac. No one seem to understand my level of fear. Are these medications going to make it worse? The flank pain, lower ab pain, frequent urination, nausea, & vomiting is scaring me. My grandmother is dying with Renal failure due to cancer as we speak and I’m paranoid that it may be hereditary and thinking Lupus is attacking this organ (my kidney). It seems as if it was Lupus that was the cause of many of my previous ailments but 20 plus years ago, Lupus was a rare diagnosis and doctors didn't look further into it and neither did I. I have found myself thinking crazy thoughts because I'm tired of all the pain. Can anyone give encouraging words, please!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/22/2012 5:06 PM (GMT -6)   
I think you need to get with a kidney doctor ASAP. It sounds like you've got a kidney infection going on.
It also sound like you've got a flare of some type going on.
I don't think the the medicines will hurt you more but I'd discuss them with the doctor to be sure.

When I'm in a lot of pain I get a little crazy with my thoughts too. I try to get rid of the pain and it helps my mind to clear better.
Joy

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 2/22/2012 7:09 PM (GMT -6)   
Joy is right, you should get to your PCP and get a refferal to a kidney doctor.
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~
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