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Rituxan and Rest, Patient conf. in Arlington

Started by ktfabian, March 25, 2009, 08:45:32 AM

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ktfabian

March 25, 2009, 08:45:32 AM
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
________________________________________________
55yo Sjogren's, Fibro, Selective IgM Def., back pain - fused L3/4-L5/S1,  Costochondritis, Achilles tendon tear,  cluster headaches
Plaq, Medrol, Vit D, Arava, Rituxan, Mobic, Evoxac, Tumeric 1000mg daily, Cymbalta, Fiorcet, Klonopin, Soma, pain med.

ohiolady

#1
March 25, 2009, 02:45:38 PM
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
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

kcoffiner

#2
March 25, 2009, 04:49:16 PM
Haha thats me! I am just curious to see what the conference is like as I never been to one before.

ohiolady

#3
March 26, 2009, 06:23:06 AM
kcoffiner,

You'll have to tell us all about the conference.  Hope it is a good experience.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

gurs

#4
March 26, 2009, 06:40:06 AM
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!!
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

pghgirl

#5
April 05, 2009, 12:27:52 AM
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

rnathans

#6
April 07, 2009, 07:31:42 PM
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

Linda196

#7
April 07, 2009, 08:22:08 PM
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.
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https:https://sjogrensworld.org/index.php?board=30.0

gurs

#8
April 30, 2009, 02:58:30 PM
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?
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

rnathans

#9
April 30, 2009, 07:20:32 PM
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

irish

#10
April 30, 2009, 08:41:16 PM
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

gurs

#11
May 01, 2009, 08:47:57 AM
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.
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

gurs

#12
May 17, 2009, 12:58:57 PM
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
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

eyeamdry

#13
May 17, 2009, 04:50:37 PM
Gurs, good luck and I hope you feel better after this infusion.  Lucy

Chickpea

#14
May 17, 2009, 04:55:24 PM
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
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