View Full Version : Not fair :(
07-23-2009, 11:45 PM
Well, my hematologist wanted to start me on Rituxan because of my low platelet counts...
He applied for me for the clinical trial at Monash Medical Centre and they have knocked me back :(
Apparently i was denied because i have SLE.
It is way expensive to buy, so now there are only 2 options left- take out my spleen which he doesnt want to do because of the SLE, or some other drug which i have to inject into myself once a week forever :(
I know there are probably some of you who have to inject themselves, but it just upsets me to think i might have to do this. Im only 20...i dont want to be injecting myself every week for the next 60 years...
I HATE this stupid disease.
07-24-2009, 05:31 AM
Dont be disheartned i kno how bad it seems having to take a med or inject ya self for life! cause thats it isnt it? when some one says for life... i kno this cause of my 2 previous dvts ive had im now on warfarin (blood thinners) for life as the risk is too high of another blood clot forming, but its ok cause ive been on it for 2 years now, and its just the norm for me now.
You will get used to the injection everyday it will come about as normal as putting the kettle on every morning,
We are always here to help you as best we can.
07-24-2009, 05:53 AM
Yeah i know its not that bad, i will get used to it.
The doctor just got my hopes up with the rotuxin, i really thought i was going to get it :(
But apparently only people who ONLY have ITP can be placed in the clinical trial...stupid, i need it too!! Come on government, its been on the waitlist for PBS for over a year now!!!!
07-24-2009, 04:33 PM
Sorry to hear you didn't qualify for the Rituxan trial! They are expensive treatments. I had 4 of them a few years back and the insurance I had ended up denying my claim and I was sent a bill for $20,000. I tried to fight it but it was experimental for SLE and I tried to fight it but they still denied. Somehow by the grace of God my bill was paid where I had my infusions done....that was such luck for me. But now I need it again and I'm dealing with insurance and so far they are saying it will be covered but I am still scared I will get a bill!
I will say I hate this disease too! We all face such struggles with it whether it be daily injections, all the pills, the joint pain, fatigue, muscle pain , and the list goes on. It is so nice that we can stick together as a group and hate it together!
I hope they figure out what is best for you! Keep us posted!
07-25-2009, 12:15 AM
It makes no sense to deny patients what they need. I'm sorry ya'll have gone through what you have. That sucks so bad!
07-25-2009, 03:38 AM
I'm sorry to hear that you got rejected for your trial. Darn SLE likes to set us back when we'd like to advance. It's lame that your doctor got your hopes up for this trial. And lamer that the you got turned down for having one extra ailment. Maybe one day the people will realize that others need the treatment too.
As for the injections, iseedeadmonkeys is right about how you adjust to them. I've recently been put on MTX. It'll be two months on August 6th, and it's already become pretty normalized, just like taking all the medications and all the other perks. It sucks getting stuck with this damn disease so young. All I've managed to think about lately is how I'm not even twenty and I have a lifetime of this to get through. But everyone here has made it so much more manageable.
I hope your treatments get sorted out, my dear! Keep your chin up, and we're all here if you need us. =]
07-25-2009, 07:41 AM
Do you have Rx coverage? If you do try getting the Rx through mail order because they offer a discount. Thats how I get my meds, I take cellcept which is very expensive and if Im not mistaking rixtuban and cellcept are around the same price, I pay $250.00 for a 3 mos supply. Thats still alot but< if you donrt go through mail order ... the pharmacy charges that for 30 day suppy, wtf?! So I use the mail order.
07-25-2009, 07:54 AM
Sorry to hear that Monique! I have learned in the last year this disease has a way of giving us false hope. "No your fine I'll take you off the meds" "Ooops your not fine now we have to start from scratch again" I hope you are able to find relief soon. And I think Chriss's idea is worth researching.
Sending you happiness and hugs and kisses