Xeljanz Update

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suzy-q
Regular Member


Date Joined Sep 2015
Total Posts : 147
   Posted 3/14/2016 6:40 PM (GMT -6)   
My husband was scheduled to have first step of 3-step j pouch surgery today.

Ten days ago, to everyone's surprise, our insurance agreed to pay for Xeljanz even though it is not yet approved for UC. Delaying the surgery was not an easy or obvious decision. After having such high hopes for Entyvio and then suffering through it for 6 months with no response other than extreme fatigue, he was not eager to delay surgery for another experiment with drugs. However, the clinical trial measured effects after 8 weeks and 48% of people (very small group, admittedly) had improvements. So we are giving it 8 weeks.

His regular GI did not have a protocol in their office to prescribe the drug, but our second opinion doctor at Johns Hopkins was able to do it. We are his first patient to use it. Our pharmacist has never dispensed it. Definitely feel like a guinea pig.

He takes two pills in the morning and two at night (so much better than infusion). One week in -- no side effects; definitely feels better but it is too early to tell if it is the drug or just the ups and downs of UC. The big test will be in a few weeks when he starts to taper off the prednisone. Needs to get monthly bloodwork to check lipid levels.

Very little info from IBD sufferers using this drug in the cyberworld. I do note that there is someone on the Crohns page who got this off label and reports to be doing well.

I will update regarding progress, or lack thereof.
Spouse has UC diagnosed 2013. Developed antibodies to remicade, humira. Entyvio did not work after 6 infusions. Currently on Asacol HD, 6mp (25 mg plus allopurinol). Only thing that seems to work is prednisone.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14450
   Posted 3/14/2016 7:27 PM (GMT -6)   
I hope he has great luck!! They were doing a trial at the hospital I had surgery. I decided not to bother. I didn't want to put off having surgery. I just wanted to get on with life :)
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!

deltaforce
Veteran Member


Date Joined Jun 2010
Total Posts : 2215
   Posted 3/16/2016 3:05 PM (GMT -6)   
Thank you for the information. Since Xeljanz was in the pipeline, I have an eye on it. Since its debut in the market, I am hoping that it will be approved for UC. I personally have high hopes from Xeljanz. I hope it works with your husband. Please keep us updated.
Dx 03/2007, left sided UC. Currently in flare
Sulfasalazine 1.5gm 4X a day, Vit. B12, 1mg, 1 tablet, Fish oil 2400mg , Butyrate 2-3 caps, Vit D 5000 IU, Benebiotics 2caps, Canasa,

Verapamil 320mg for migraine, Nabumetone 750mg as an abortive
uBiome discount 10% off any kit http://bit.ly/1xYWjbG

TheITIS
Regular Member


Date Joined Jul 2015
Total Posts : 76
   Posted 3/16/2016 4:07 PM (GMT -6)   
I'll be watching this as well :)
Pancolitis DX:
Fall 2007


Currently on:
Imuran
Lialda
Entyvio

Marauder93
Veteran Member


Date Joined Feb 2014
Total Posts : 1185
   Posted 3/16/2016 4:35 PM (GMT -6)   
Tried getting this in Canada but they wont budge
Pancolitis (UC) since Sept 2009 - Averaged 8-14 BMs/day over this time with no response or remission
Therapy
Salofalk/5-ASA (enema and oral) - 4g each
Clinical Trial Drugs
Failed Therapies
Entyvio
Anti-MAdCAM Antibody - 225mg injection/4 weeks (study drug)
Remicade - 400 ml
Nicotine patches - 21 mg
Imuran - 100 mg

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4297
   Posted 4/24/2016 5:30 PM (GMT -6)   
Suzy-Q,

How is your husband doing on xeljanz? Has it been almost 6 weeks? How long did they say it would take to see the full results of Xeljanz?
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, Sulfasalazine, and rotating antibiotics

Post Edited (ks1905) : 4/25/2016 10:39:38 AM (GMT-6)


suzy-q
Regular Member


Date Joined Sep 2015
Total Posts : 147
   Posted 4/25/2016 10:23 AM (GMT -6)   
Just starting week 7 on Xeljanz, and so far cautiously optimistic it is working. Doc had said to start tapering off prednisone at week 4. Husband started tapering off of prednisone (22.5mg seemed to be the magic dose for keeping symptoms in check) at week 3. Had terrible symptoms for a week but they subsided. Now down to 10 mg prednisone, which he hasn't been able to do since the remicade worked briefly two years ago. Feels better than he has in a long time, and no apparent side effects. Big test will be in a few weeks as he completes tapering off the prednisone.
Spouse has UC diagnosed 2013. Developed antibodies to remicade, humira. Entyvio did not work after 6 infusions. Only thing that seems to work is prednisone. Early March 2016 started Xeljanz off label. Will assess after 8 weeks. Test is whether he can get off of prednisone.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4297
   Posted 4/25/2016 11:06 AM (GMT -6)   
Suzy,

So he's been on Prednisone for about 2 years? Below 20 mgs of Prednisone can be pretty tough to adjust to if he's been on Pred for a long time, symptoms can flare as his body adjusts to the lower dosage.

I ended up with really bad prednisone withdrawal after I completely tapered off, severe joint pain, exhaustion, difficulty with temperature changes (hot/cold) and horrible headaches.

I'm glad that he is responding to the Xeljanz.
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, Sulfasalazine, and rotating antibiotics

suzy-q
Regular Member


Date Joined Sep 2015
Total Posts : 147
   Posted 4/25/2016 11:21 AM (GMT -6)   
Keith,

The prednisone withdrawal is the next hurdle, perhaps. How long after you were off did it take before the symptoms subsided. Husband is going down 2.5mg every 6 days.

-Suzy
Spouse has UC diagnosed 2013. Developed antibodies to remicade, humira. Entyvio did not work after 6 infusions. Only thing that seems to work is prednisone. Early March 2016 started Xeljanz off label. Will assess after 8 weeks. Test is whether he can get off of prednisone.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 8740
   Posted 4/25/2016 11:34 AM (GMT -6)   
After very long term usage of steroids, I'd step down much slower as you get near the end. Once you get below 10 mgs it gets a lot harder. I'd do 1mg steps as you get closer to zero. Even alternate doses 5mgs one day, 6mgs the next, back to 5 as you step down to ease the drops. His adrenals have been a sleep for a long time, and might need some coaxing...

Prednisone withdrawal might persists for 2-3 days after each drop (fatigue, aches, headaches). If you see uc symptoms like blood or diarrhea then halt the taper and contact your gastroenterologist as that might mean you need to wait longer for that biologic to work.
Moderator Ulcerative Colitis
John
, 37, UC in histological remission
Rx: Remicade @5mgs/kg/8wks

Now my spouse calls me fartzilla, thanks IBD...

Post Edited (iPoop) : 4/25/2016 11:43:25 AM (GMT-6)


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4297
   Posted 4/25/2016 11:35 AM (GMT -6)   
I've had it a few times, it is brutal. Once time I remember my hands just wouldn't stop shaking from it.

I had to go back on steroids once just to get the withdrawal to subside.

I think the last time I had withdrawal it took about 6-8 weeks to fully go away.
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, Sulfasalazine, and rotating antibiotics

suzy-q
Regular Member


Date Joined Sep 2015
Total Posts : 147
   Posted 5/30/2016 7:37 PM (GMT -6)   
Here's the latest update.

My husband certainly feels like he is in remission with the Xeljanz. No UC symptoms -- for the first time in almost three years. No urgency, no cramping, no bleeding. Able to leave the house for work in the morning no worries. Previously, he had not been able to get below 22.5 mg prednisone without flaring.

With the Xeljanz, had tapered down to 2.5 mg but was pretty sick -- not UC symptoms but clearly his adrenal glands haven't kicked in yet. Back up to 5 mg and meeting with doc this week to figure out how to get off the prednisone.

No apparent side effects from Xeljanz, either.

Hoping this one is the charm but if it is not, going to surgery with no regrets.
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. It is working. No more UC symptoms, but still fearful of foods that triggered symptoms before (like fruits and vegetables). Getting completely off prednisone is the current challenge.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14450
   Posted 5/30/2016 7:51 PM (GMT -6)   
That sounds like amazing progress!!! I am so excited for you guys. I think the key is going to be going SLOW. I had to go at .5 a week when I was trying to get from pred to stable on 6mp. It took a long time but it got me a 1.5 or 2 year remission. Take it slow. I really hope his GI is able to help him work to get off slowly and keep things managed. :)
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!

deltaforce
Veteran Member


Date Joined Jun 2010
Total Posts : 2215
   Posted 5/31/2016 4:08 AM (GMT -6)   
I am so glad that it is helping your husband. Now we have a hope that one extra drug added in our list, at least for some. Hope it maintains like this.
Dx 03/2007, left sided UC. Currently in remission
Sulfasalazine 1.5gm 4X a day, Vit. B12, 1mg, 1 tablet, Fish oil 2400mg , Butyrate 2-3 caps, Vit D 5000 IU, Benebiotics 2caps, Mesalamine Enema,

Verapamil 320mg for migraine, Nabumetone 750mg as an abortive
uBiome discount 10% off any kit http://bit.ly/1xYWjbG

Uniform Charlie
Regular Member


Date Joined Jul 2015
Total Posts : 397
   Posted 6/6/2016 11:45 AM (GMT -6)   
This report was from 2015. I was impressed with the study cited for xeljanz. If I'm not mistaken, it has the highest clinical response rate (in studies that I've seen) of all biologics. I'm not great at reading clinical trial results so feel free to correct me if I'm wrong on this.

This phase two study was for moderate/severe UC patients who failed other biologics...see below.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4282853/

"1. Tofacitinib

Tofacitinib represents a new class of JAK inhibitor that inhibits JAK1, JAK2, and JAK3 to modulate the signaling of IL-2, IL-4, IL-7, IL-9, IL-15, and IL-21 receptors that are associated with six types of cytokine functions that integrate lymphocyte activation, function, and proliferation. In addition, by inhibiting JAK1, tofacitinib blocks the activities of proinflammatory cytokines including IL-6 and interferon γ, and by inhibiting JAK2, it blocks the signaling to erythropoietin. Because of its varied anti-inflammatory actions, tofacitinib is currently used in allograft rejection prevention, rheumatoid arthritis, and psoriasis.

Recently, a phase II, double-blind, placebo-controlled study evaluated the effects of tofacitinib administration for 8 weeks in 194 moderate-to-severe ulcerative colitis patients who did not respond to steroids, immunosuppressives, or anti-TNF agents.6 Patients were assigned to one of five treatment groups: tofacitinib 0.5 mg, 3 mg, 10 mg, 15 mg, or placebo in a 2:2:2:3:3 ratio. For 8 weeks, medications were taken twice daily, and the patients were followed for another 4 weeks.

The primary endpoint of clinical response rate at week 8 was 42% in the placebo group and 32%, 48%, 61%, and 78% in the tofacitinib 0.5 mg, 3 mg, 10 mg, and 15 mg twice daily groups, respectively (p=0.39, p=0.55, p=0.10, and p<0.001), showing a statistically significant difference only for the 15 mg twice daily group. The clinical remission rate at week 8 was 10% in the placebo group and 13%, 33%, 48%, and 41% in the tofacitinib groups, respectively, in order of increasing dosage, with the 10 mg and 15 mg twice daily groups showing statistically significant differences (all p<0.001). Tofacitinib dose-dependent increases in low-density lipoprotein cholesterol and high-density lipoprotein cholesterol were observed, and neutropenia which means absolute neutrophil count less than 1,500 per cubic mm was detected in three patients. In terms of serious adverse events, a single case each of postoperative abscess and anal abscess occurred in the 10 mg group. In conclusion, this study confirmed that tofacitinib was more effective than placebo in bringing about clinical response and clinical remission in moderate-to-severe ulcerative colitis patients.

In patients with active ulcerative colitis who do not respond to anti-TNF agents, tofacitinib shows clinical importance in that it can easily induce clinical response and clinical remission. However, since there have been no reports to date on remission maintenance with tofacitinib and only short-term side effects have been investigated, additional large-scale studies will be needed in the future to gather evidence regarding high remission maintenance and safety. Through this process, the role of tofacitinib in treating ulcerative colitis patients who do not respond to anti-TNF agents will be determined."
Male Mid 30's
Diagnosed Proctosigmoiditis (UC) February 2015
Current Meds: Lialda 1.2gm 2x daily, generic rowasa as needed
Perianal Abscess June 2015
Fistulotomy December 2015...Doc's still say it's UC, not Crohn's

Specific Carbohydrate Diet started June 2015. Still going strong.

"Happiness doesn't depend on who you are or what you have, it depends solely on what you think." -Dale Carnegie

suzy-q
Regular Member


Date Joined Sep 2015
Total Posts : 147
   Posted 7/31/2016 9:39 AM (GMT -6)   
The latest from Pfizer -- it appears that the clinical trial for Xeljanz is continuing positively. http://finance.yahoo.com/news/pfizer-announces-positive-top-line-201000046.html

I hope it gets FDA approval -- we live in constant fear that insurance will stop covering it.

Husband has been on Xeljanz since mid-March and is definitely in remission. Feels good and can eat everything.
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. It is working! No more UC symptoms and able to eat almost everything. Fresh fruit and vegetables for first time in 2 years. Struggling to finally taper off of prednisone.

VerM
Regular Member


Date Joined Feb 2009
Total Posts : 99
   Posted 8/1/2016 6:41 AM (GMT -6)   
So buy stocks in this company then ?

;)

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 692
   Posted 8/1/2016 7:30 AM (GMT -6)   
Awesome! Gives us hope.
female, Canada

IVIG
pentasa
6 Entyvio infusions...no response, discontinued
UC/Crohns? - tested positive for MAP antibodies & mycobacterium
PG- remission
Flaring for almost 3 years....in a bad way due to 5 abx treatment gone very wrong. Sigh

suzy-q
Regular Member


Date Joined Sep 2015
Total Posts : 147
   Posted 10/12/2016 2:26 PM (GMT -6)   
Husband just had colonoscopy which confirmed what we already knew -- he is in remission. No evidence of colitis anywhere. Mucosa totally normal. We still need to await biopsy results, however, doc was pretty confident they would come back normal.

So, Xeljanz seems to be doing the job. 4 small pills a day and so far no side effects. It is in Phase III trials in US and I have seen some news reports that Pfizer is hoping to get FDA approval for use in UC by 2017.

For what it's worth, GI has one patient in the Stelara UC study. Patient was like my husband in that remicade, humira, entyvio didn't work. Stelara is working great for this guy -- completely clean colon 8 weeks or so into the study.
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. It is working! No more UC symptoms and able to eat almost everything. Fresh fruit and vegetables for first time in 2 years. Struggling to finally taper off of prednisone.

momto2boys
Veteran Member


Date Joined Jun 2013
Total Posts : 1690
   Posted 10/12/2016 2:36 PM (GMT -6)   
That's great news!
41 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 2 Lialda + sfRowasa nightly - supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 2 TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 8740
   Posted 10/12/2016 4:22 PM (GMT -6)   
Awesome, congrats.
Moderator Ulcerative Colitis
John
, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Lialda, 17mgs pred (tapering)

Have you seen that movie The Perfect Storm? That's my bowels and why I need bathroom access absolutely right now, capiche?

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 692
   Posted 10/14/2016 2:27 PM (GMT -6)   
Fantastic Suzy-q!! Glad to hear it. May his remission last forever:)
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
Flaring 3 years. Currently dealing with RVF??
started Humira Sept 1, 2016.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4297
   Posted 10/19/2016 1:25 PM (GMT -6)   
Interesting, I wonder how many other AI diseases that Xeljanz will work for.

www.cnn.com/2016/10/18/health/experimental-drugs-restore-hair-loss/index.html

Drug reverses one baldness type; is male pattern next?

In his mid 40s, Mike Thomas went bald. Not a "little bald spot in the back" kind of bald or "receding hairline" kind of bald, but almost totally and completely bald. He was diagnosed with alopecia areata, an autoimmune disease, and he was devastated.

As part of a study conducted at Stanford and Yale, Thomas and 65 other alopecia areata patients took the pill, called Xeljanz, which is prescribed for people with rheumatoid arthritis, another autoimmune disease.
More than half of the study subjects saw hair regrowth. A third recovered more than 50% of their lost hair. In a separate study, nine of 12 patients with alopecia areata recovered more than 50% of hair regrowth using a similar drug, Jakafi, which is approved for cancer treatment
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

xeljanz
New Member


Date Joined Dec 2016
Total Posts : 1
   Posted 1/1/2017 8:47 PM (GMT -6)   
Suzy - I was at Hopkins for a second opinion last week and Xeljanz was mentioned as an option for me. I made my e-mail address public, please send me an e-mail. Thanks!

suzy-q
Regular Member


Date Joined Sep 2015
Total Posts : 147
   Posted 1/3/2017 7:29 PM (GMT -6)   
Sent you an email.
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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