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Anyone Taking Xeljanz???

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Ulcerative Colitis
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Posted 10/18/2018 7:59 PM (GMT 0)
Older biologics (humira and remicade) are the cheapest biologics, and your insurance will try to get you into them first for that very reason. In fact their are now biosimilars (the closest thing there is to a generic for biologics) for both remicade (i.e., inflectra) and also for humira. Newer biologics like entyvio/xeljanz/stelara are two to three times the cost of remi/humira.

There's justifiable reasons you might prefer xeljanz, they're safer, a simple pill etc.
Posted 10/18/2018 10:12 PM (GMT 0)
So for my 8 week dosages of Remicade the cost before insurance was $11,226.00 for 5/ml (I hadn't yet gotten approved to double that dose and move to 6 weeks when the GI and I decided to switch to Xeljanz which is actually working whereas the Remicade did zippo). The estimated cost before insurance of a 30 day supply of Xeljanz (10mg 60 pill bottle) as they've told me is between $4,000 and $5,000. Compared at apples to apples timeframe of 8 weeks, that's $10k for Xeljanz vs $11,226 for Remicade... so not sure their resistance other than the fact that it can take months for them to update a approved overall formulary once something gets FDA approved and if not on the formulary, then it's the whole pre-authorization, appeal 1, appeal 2 process. Fortunately Pfizer has a interim service to hold you over (for free believe it or not) 1 or 2 months supply while you go through the approvals...
Posted 10/18/2018 10:24 PM (GMT 0)
We had BC/BS in Maryland and then also Massachusetts and they approved the Xeljanz. The appeal was handled quickly, although once the approval was for one pill a day instead of four. Our doctor's office was really on top of things so it didn't take longer than 2-3 weeks is my recollection. There is no downside to following up directly with doc office and also calling insurance to make sure it went through.
Posted 10/18/2018 10:31 PM (GMT 0)
Remicade cash price is approximately $800-$900 per 100mg bottle. So you could extrapolate that to whatever dosage you are getting. Then you have to factor in the cost of the infusion itself. If you were getting it in a hospital setting than the cost is usually a lot more than in a clinic or home infusion service. The cash price you listed for xeljanz is what a monthly supply of 10mg a day would be which is what RA patients get. The cash price for UC would be double that at around 9-10k a month. These are cash prices though so depending on how your insurance provider has decided to bill and cover things could make a difference.
Posted 10/18/2018 11:19 PM (GMT 0)
I have BCBS. My Doctor had to get approval from BCBS and while they didn't approve it at first when my Dr. explained my current quality of life they approved it.
Posted 10/19/2018 2:14 PM (GMT 0)
Very helpful responses... Thank you! I'll let you know if the BCBS approval process is different now that we are on the other side of the FDA approval... I'm 1 week into the pre-authorization process, so it will be a bit longer, but ready to taper down to 10mg Pred Monday for the 1st time since last year! Most hopeful this continues for this severe pancolitis patient!
Posted 10/19/2018 4:16 PM (GMT 0)
Blue Cross / Blue Shield in Maryland, and then in Massachusetts approved Xeljanz for us. We only had to appeal once. The whole process was very fast (less than two weeks, I believe) primarily because I think our doctor's office knew what they were doing. You should feel free to call the doc office and also your insurance directly to make sure it really was submitted to correct specialty pharmacy.
Posted 10/19/2018 6:32 PM (GMT 0)
suzy-q, how long was your spouse on Prednisone? I see how long it took to get off of it and wondering... I've been on 40mg since April and at GI's direction been dropping every 7 days. So far so good; energy a touch slow to return, but eating still off the hook. I'm currently at 20... on Monday go to 10 for 7 days, the 5mg for 7 days (assuming Xeljanz takes over UC, if not, I'll get stuck at whatever level I get stuck at)... but seeing your spouse's experience... I'm thinking either I need to extend out the taper or... maybe suzy-q's spouse was on Pred at a high level for years...
Posted 10/19/2018 7:29 PM (GMT 0)
I'm really glad to hear the Xeljanz may be working for you.

He was on steroids almost constantly from the time diagnosed in 2013 until 2017 (even though in full remission by October 2016 on Xeljanz). Our lesson in this process is that GIs do not understand prednisone tapers, especially if you have been on them long-term. He started to feel quite ill (as opposed to the usual prednisone lousy feeling) once he was at 2.5mg -- shortness of breath, more memory issues than usual, and he also had some neuropathy which seemed to get worse. At that point we saw an endocrinologist who said if you do a taper correctly, it may take longer, but you shouldn't feel so sick. So he went back up to about 10 and then very very slowly tapered, 1-2 mg every four weeks and then at some point he went onto hydrocortisone. Some of it depends on how tolerant you are of feeling lousy and the associated worry. Once you get the 5 mg, you may want to go slower. Some people get low and do every other day. See how you feel. You can always go back up to the level where you didn't feel lousy, and adjust things as you go.
Posted 10/19/2018 8:45 PM (GMT 0)
great advice as one can only cut a 10 mg Pred pill so many ways before it's just a dot of powder smile Thanks - I have felt shortness of breath, occasional heart palpitations - like one or 2 a week, and sluggishness, so glad I asked... 4 years. wow - I can't imagine! I'm praying that the UC symptoms stay at bay while I taper. Cautiously optimistic. Thanks for sharing, suzy-q!
Posted 10/19/2018 9:04 PM (GMT 0)

StewieCat said...
I started noticing improvement after a couple of weeks on Xeljanz. I'm on a double-dose: 2x 5mg twice per day, which seems to be the dosing guidelines for UC.


Interesting, I'm taking 2x 10mg and I spoke to a pharmacist and he said this is the dose for UC. I guess the outcome is the same but I'm glad I have fewer pills to swallow.
Posted 10/19/2018 9:10 PM (GMT 0)
Nealzy -- There are 1 mg prednisone tablets if you end up needing to slowly taper.
Posted 10/20/2018 2:37 AM (GMT 0)
I think the prednisone taper depends on the person and the length of time they were on prednisone. I was on it for about 2 years or so and my last 5mg was done in a month and I felt fine.
Posted 10/21/2018 5:37 PM (GMT 0)
FeelingLessCrappy - that's good to know. I'm dropping from 20mg to 10 starting tomorrow - on a path for a 1 month - 40 days (roughly) taper from 40mg to completely off if the Xeljanz holds... and that is after being on 30-40mg for about 6 months...
Posted 10/21/2018 11:35 PM (GMT 0)
I might be misunderstanding but 20 straight to 10 seems like a big decrease. Also, 40 days to go from 40 to 0 is too quick. I could understand going down by 5 every week or so with the last 20 taking much longer. I'd ask the doctor to slow it down a lot. If I remember right after 20 go down by 2.5 per week and when u get to 10 go down by 1 per week. If you are still having difficulty with withdrawal at any point you'd need to slow it down from there but 40 days after being on it for years will hit you hard.
Posted 10/22/2018 12:16 AM (GMT 0)
I agree with crappy. You are rushing. If you feel like you can do it, so be it, but I would be slow and steady. At under 15mg, or especially 10mg, you should start going at 1mg. 6 months on 30-40 i a lot, and it can cause dependency in your body. You definitely want to take it easy. I know you want off, but better to go slower and have luck, than to have to go back up.
Posted 10/22/2018 5:35 AM (GMT 0)
I have Aetna and was initially denied. It was later approved on appeal. This was earlier this year before it was approved for UC. I think you have to fail at other drugs before insurance will approve it.
Posted 10/22/2018 12:14 PM (GMT 0)
There's no first prize for rushing off of pred (often just a relapse back into a bad flare). Slow, stead, and small drops of pred are your best bet with pred. Make sure Xeljanz is working before getting below 20mgs, that pace of taper is foolish.
Posted 10/23/2018 10:05 PM (GMT 0)
so... now on day 2 of 10 mg Pred, I did have a nice headache this morning and a bit of a sluggish afternoon, but more concerning is that the solid poop I've had has gone back to liquid with a bit more frequency... when I do 10 mg Pred, I do 5 in morning and 5 at night so my nights I only get up once or twice vs. every darned hour... so I guess I'll be in a holding pattern at 10... I don't know if Xeljanz needs to build up in one's system as I am only at day 12 of Xeljanz, but if not, then I'm not sure if I'll be able to get off of "the devil's tic tacs" smile. What, by the way, are the withdrawal symptoms from Prednisone - I'm still only 1 year into my new severe pancolitis UC life, so I'm a bit ignorant to that effect...
Posted 10/23/2018 11:00 PM (GMT 0)
To answer your question re prednisone withdrawal, the symptoms are sort of the same as when you are on prednisone. You feel like crap. Your adrenal glands may have gotten lazy with the prednisone, so it may take a while for them to wake up, which is why you taper slowly. Splitting it between morning and evening is sensible.

I looked at my husband's symptoms journal when he started Xeljanz. When he started Xeljanz, he felt "better" but that doesn't mean the symptoms just went away. The mornings were a little better, then they weren't. about three weeks in, the same time he tapered from 22.5 mg pred to 20 mg pred, symptoms got worse including blood. By one month, however, there was no more blood and symptoms (i.e., bathroom emergencies) must have started to get better because there is nothing in the journal at this point. By 8 weeks, which is consistent with the clinical study, there were definitely fewer trip to bathroom and less urgency and he was close to feeling normal.

Part of the freaking out feeling is also prednisone withdrawal. If you need to go up to 15 mg to ease the symptoms, then do that and hold the course. You will know whether the xeljanz is really working in the next month or 2.
Posted 10/23/2018 11:06 PM (GMT 0)
great insight... so it does appear with respect to Xeljanz that it takes time + the time needed for the colon to heal. I'll keep updating as the Xeljanz folks are few at this point, so happy to be another (hopefully) success story while documenting the taper that by all appearances may be too fast at this point, but so far holding at 10mg when I was at 30 mg 14 days ago and 40 mg ~25 days ago... I think I'll hold at 10 mg Pred for longer than my planned 7 days given the feedback here to go easy... and then will drop to 5 instead of 0 as I don't want to be foolish!
Posted 10/24/2018 12:29 PM (GMT 0)
Prednisone withdrawal is pretty much fatigue and body-aches. As your adrenals regulate sleep/awake cycles and provide a mild pain reliever.
Posted 10/26/2018 5:30 PM (GMT 0)
Random question.

I started xeljanz on 10/05 and I was supposed to start my period on 10/14 and I didn't get it. I have an IUD so there is no possibility that I could be pregnant.

Any other lady here in xeljanz with irregular periods?
Posted 10/29/2018 2:19 PM (GMT 0)
I know you're flaring badly and that can mess with your cycle. If your body is low on nutrients, excessively stressed, etc etc then you might have entirely skipped cycles or very lite cycles.
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