Xeljanz Update

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Ferg520
Regular Member


Date Joined Mar 2006
Total Posts : 24
   Posted 1/11/2017 2:00 PM (GMT -6)   
Hi Suzy!

Just reading through this post and I've also been interested in Xeljanz. My GI here in Houston at the Ertan Digestive Center is looking into it today but it's taken me doing a lot of pushing to get it. I take it your husband is still doing great?

suzy-q
Regular Member


Date Joined Sep 2015
Total Posts : 165
   Posted 1/11/2017 3:01 PM (GMT -6)   
Hello.

Husband is still completely in remission. Amazingly we only had to go through one appeal with the insurance company to get it covered. Probably because he had used all the other approved biologics and had surgery scheduled -- the meds are cheaper than three surgeries for a j-pouch. Good luck and let me know if you have any other questions.
Spouse diagnosed with UC in 2013. Developed antibodies to remicade, humira. Entyvio did not work after 6 infusions. Only thing that seemed to work was prednisone. Early March 2016 started Xeljanz off label. In remission within 2 months. Working with endocrinologist to get off prednisone, and neurologist to deal with neuropathy in feet that developed in conjunction with prednisone taper.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4434
   Posted 1/12/2017 12:47 PM (GMT -6)   
suzy-q said...
Hello.

Husband is still completely in remission. Amazingly we only had to go through one appeal with the insurance company to get it covered. Probably because he had used all the other approved biologics and had surgery scheduled -- the meds are cheaper than three surgeries for a j-pouch. Good luck and let me know if you have any other questions.


I think that my surgeries were in total over $600,000 paid out by my insurance company and 50+ days in the hospital.

The meds aren't cheap either, my current insurance company pays out about $110,000 a year for my annual Stelara costs.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara and Sulfasalazine

suzy-q
Regular Member


Date Joined Sep 2015
Total Posts : 165
   Posted 1/12/2017 2:24 PM (GMT -6)   
Wow re Stelara! I have read that the Xeljanz wholesale price is $2500 / month, however, the pharmacy charges my insurance company $7,500 / month. It is the most valuable item in our house!
Spouse diagnosed with UC in 2013. Developed antibodies to remicade, humira. Entyvio did not work after 6 infusions. Only thing that seemed to work was prednisone. Early March 2016 started Xeljanz off label. In remission within 2 months. Working with endocrinologist to get off prednisone, and neurologist to deal with neuropathy in feet that developed in conjunction with prednisone taper.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4434
   Posted 1/12/2017 2:51 PM (GMT -6)   
Suzy,

I don't want to thread-jack too much but my 2 month supply of Stelara is paid at $17,397.55 (original costs before discounts $37,128.93). I take a double dose (90 mgs) which is the FDA approved dosage for CD.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14630
   Posted 1/12/2017 5:56 PM (GMT -6)   
I am so happy people are having luck with xeljanz!!

I personally feel like surgery was so much cheaper for me. In time, energy and actual dollars. I spent a few 1000 on surgery - could have spent 0 if I used an in-network doctor, but chose someone out of network. Over the years with UC, I was spending my max out of pocket every year + deductible, which was a few 1000 per year - plus a lot of additional costs (like time, poor QOL, reduced ability at work, cost of traveling to doctors, parking...), and there was no end to it. Since surgery, I spend next to nothing on health stuff.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Xelquestions
New Member


Date Joined Apr 2017
Total Posts : 2
   Posted 4/18/2017 3:01 PM (GMT -6)   
Hi Suzy,

I hope you see this message or anyone else who has experience. My insurance is not allowing Xeljanz and I am working with Hopkins to get it approved, does anyone know what or who I can contact or do?

I am in the similar situation with your husband, only surgery left.

Please help!

suzy-q
Regular Member


Date Joined Sep 2015
Total Posts : 165
   Posted 4/19/2017 12:02 PM (GMT -6)   
One thing I liked about working with Johns Hopkins staff is that they are on top of the insurance approval process.

You always get rejected the first time, especially since Xeljanz is off label.

If you have tried and failed at everything else, hopefully you will get approved. Your doc will write the appeal if it becomes necessary. Also, if you get your insurance through your employer sometimes they can help too. Let me know what happens.
Spouse diagnosed with UC in 2013. Developed antibodies to remicade, humira. Entyvio did not work after 6 infusions. Only thing that seemed to work was prednisone. Early March 2016 started Xeljanz off label. In remission within 2 months. Working with endocrinologist to get off prednisone, and neurologist to deal with neuropathy in feet that developed in conjunction with prednisone taper.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4434
   Posted 4/19/2017 12:30 PM (GMT -6)   
If you can't get Xeljanz approved, I'd continue the process until you've exhausted all your appeals for Xeljanz since you already started it but it would probably be easier to get Stelara because it is already FDA approved for CD. If you haven't tried stelara yet.

Suzy is correct, since it is off-label you will get an automatic rejection. Then your GI has to write a letter of medical necessity for the Appeal. You have a good chance of getting it approved if you've tried everything else. Sometimes they will still reject it and you'll have to file another appeal and your GI will do a conference call with the insurance company's doctors on staff explaining your situation and why you need Xeljanz.

Don't give up hope but it is a 2-3 week process if things don't slip through the cracks....stay on your doctors office and keep asking for updates.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

Xelquestions
New Member


Date Joined Apr 2017
Total Posts : 2
   Posted 4/19/2017 12:54 PM (GMT -6)   
Suzy do you mind sharing me what insurance and physician at hopkins you were able to work with?

suzy-q
Regular Member


Date Joined Sep 2015
Total Posts : 165
   Posted 4/19/2017 2:55 PM (GMT -6)   
Dr. Lazarev -- GI in Baltimore. I have Blue Cross/Blue Shield
Spouse diagnosed with UC in 2013. Developed antibodies to remicade, humira. Entyvio did not work after 6 infusions. Only thing that seemed to work was prednisone. Early March 2016 started Xeljanz off label. In remission within 2 months. Working with endocrinologist to get off prednisone, and neurologist to deal with neuropathy in feet that developed in conjunction with prednisone taper.
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