Hi,
I hope you don't mind me mushing these two together. Just wanted to say hi again, after taking some time off to finally rest. I got my second infusion of rituxan 2 weeks ago (it was about 3 months later than it should have been, but surgeries and infections kept me from getting it). I'm finally getting some good sleep - even sleeping through the day once or twice, and I'm starting to feel much better.
My husband lost his job in one of the big loy-off at his company, but we're doing ok so far and I'm not letting the stress get to me. The new COBRA law, where people who have lost their jobs through no fault of their own can now COBRA their health insurance for 9 months at 35% of the cost rather than the usual 100% of cost, has taken one great weight off our shoulders. This goes back to anyone laid off since last September, so if you've lost your job here in the US and are sweating the healthcare end of things, check out "COBRA" and "ARRA".
Despite the financial setback, I'm still going to the Sjogren's Patient Conference in Arlington , VA April 17 & 18. Is anyone else going? If there is anyone else, I'd love the opportunity to meet up wity you. Please just let me know and we'll work something out.
Well, that's my news here, and now I think it's time for another nap, Tracy
Tracy,
Check the board because someone posted yesterday on the conference and is looking for information or wondering if anyone else is going. Her name is kcoffiner, I think. That is totally from memory but it is close.
Anna
Haha thats me! I am just curious to see what the conference is like as I never been to one before.
kcoffiner,
You'll have to tell us all about the conference. Hope it is a good experience.
Anna
Glad to hear about the Rituxan...Im going to have it again in a few weeks. Like you, just been too sick to start it up again. I had it a few years ago and seemed to be doing a bit better. Did you have any side effects from it?
Glad to hear about the COBRA....wish they had this a few years ago when I needed it, thank god I have my Medicare and Blue Cross now!!
Oh hi tracy! i'm new here but i am attending the sjogrens conference in Arlington! i'm pretty excited, this is my first time.
erin
I am new here and curious about how you get insurance to pay for rituxan since it is not FDA approved for Sjogren's and thus considered experimental? My doctor wants to try that next for me if my current regime doesn't help.
Ruth
Hello Rnathans, welcome to Sjogren's World.
I'm afraid I haven't got an answer for you, because I'm sure it depends on each insurance company's policy. You might be able to get pre-authorization from them, but I think you'll have to ask the ins company directly, to find out.
You can go to Genetech's webite and look for Rituxan Access Solutions.......they might be able to help you??? Im not sure how my doc wrote mine up...I also have some RA?
I'm going to ask some of the nurses this weekend when I go for mine..Ive heard alot of sjogrens people get it? uhmmm..good question?
The RA diagnosis is probably the key as rituxan is FDA approved for that diagnosis.
I called Gentech and they weren't optomistic about getting it approved for Sjogrens based on their experience. Makes me even more curious how others get it approved. If you can find out any info from your nurses I would greatly appreciate it.
Ruth
I will be interested to see if the insurance companies are approving the Rituxin. My immunologist explained to me that basically (very simplified explaination) that the B cells are the ones that get so reved that they make the body go into overdrive and the antibodies develop and try to kill us off. In other words the B cells are one of the causes of the autoimmune issues. He said that the Rituxin kills off the B cells and the bone marrow has to produce new B cells but in a smaller number. Sort of like that. In other words the drug sure sounds like a good way to stop the sjogrens. Irish ;D
My doctors office does the Rituxan infusions also, I wonder how they write it up to insurance? I will def check into this and let you know.
I just had my round of Rituxan yesterday and I talked with the nurses regarding the billing....since I have some RA, it was billed under that since that is what its approved for.
I dont think Sjogren's alone will cut it. I would contact Genetech and they can prob help.
This is my 4th infusion over the last few years, and I have to say, has less side effects than ever. Last time I had it, 1.5 years ago, they did not give me any IV saline and it ran 5-6 hours and I got super sick.
My skin was peeling off...i was sooooo dry and dehydrated. This time, made sure my order listed the saline throughout the entire infusion, and we ran it 8-9 hours and it was much better..just an FYI..plus, the premeds of benedryl and 150mg predisone..Im just super tired and achy feeling.
Go back in two weeks for my 2nd infusion. Hopefully, will help.
Gurs
Gurs, good luck and I hope you feel better after this infusion. Lucy
Gurs
Thanks so much for telling us how the Rituxan infusion went yesterday. It's good that they listened to you and took it more slowly this time. How do you cope with 150 mg Prednisolone?
Hope you have a good rest now and that the side effects are bearable.
Thinking of you - Chickpea
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
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
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
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 ;D
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!
Hi Gursie
Sorry to hear you're feeling so bad today. Hope things change for the better soon.
Thinking of you - Chickpea