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Update: 1 year on Tobacitinib!
HI All!
March 1, 2019 marked my 1 year Tofacitinib.
Either Xeljanz and or Generic Tofacinix from Beacon Pharma in Bangladesh.
Started on 10mg per day and bumped up to 15 mg per day in August of 2018.
I saw my doc at Columbia University in NYC on my 1 year mark.
He drew my labs and everything came back great!
I've currently been on 3 pills per day of Tofacinix (approx 15mg per day with probable slight dosage variation due to it being a generic)
My doc has me starting to wean off the meds, here is his plan for me:
I went down to 2 pills per day (10 mg per day) starting March 1,2019
After 3 months, if no shedding, no patches, he wants me to go down to 1 pill per day.
After 3 months, if no shedding, no patches, he wants me to try to go off completely.
Update on Pfizer Xeljanz co-pay coupon. The Co-Pay coupon is now 3 months FREE
You can use it once per year. It wasn't free for me last year, but it is now!
I called in and activated the coupon with Pfizer and next day walked out of the pharmacy in NYC with 180 free pills of Xeljanz. So I will be on the name brand for 3 months and then will switch back to my stockpile of Beacon generic.
No side effects. Current pics below. Last time I buzzed was Dec 16, 2018
Also a baseline pic from March 1, 2018
Thanks for all of your support guys and wishing everyone here healing in whatever way it comes.
Love of love,
N
Replies to This Discussion
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Permalink Reply by NicoleT on
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Hi Ahmed!
Most people on 15mg per day take 2 pills in the am and 1 in PM.
I took 10mg at waking about 7am and then 5mg at bedtime about 11pm.
I definitely missed a pill here and there so need to stress about that.
Now I’m the same timing but 1 pill am and pm.
Its been 3 weeks now that I’m scaled back down to 10mg. Keep you guys posted.
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Permalink Reply by Smitty on
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Hi Nicole,
I reached out to you awhile ago but I think that was when the reply button wasn't working so well on this site. I was wondering how the invoice works for Beacon. I received an invoice for 25 boxes of Tofacitinib 5 mg. but I am not sure how to wire money with this invoice. Do I just take it to the bank and show it to them. Sorry, but I have never paid for anything via wire transfer. It's so nice to see how successful you have been with this drug. My dermatologist ordered Xeljanz for me but insurance denied. Thanks for your suggestions and any expertise you can provide.
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Hey Smitty!
Sorry I missed your message!
Yes you can print the beacon invoice, go to your branch and wire to their HSBC bank hong kong. Yourbank will give you a print out wire confirmation which you can then scan and email back to beacon.
Who do you bank with?
I bank with chase and i am able to issue the wire transfers online under bill pay.
Maybe check if your bank has that? its typically cheaper then going into a branch, but the first couple times i went to my branch. Costs about $40 to do the in person wire.
Has your doc appealed your insurance denial yet?
Has your doc given a xeljanz co-pay coupon for 3 months free from phizer?
Feel free to PM me as well!
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Thank you so much for explaining the process. Now you are really going to think I am hopeless, but how do I pm on this site. I see the Members Online box in the bottom corner but I don't see how to speak directly with you. Again, thank you for your help. My doc has not appealed yet. He has me on methotrexate but it isn't making much of an impact. Is Pfizer giving a the months for free again? I thought they stopped doing this. Do you have to show income needs to qualify?
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Hey smitty
I just friend requested you and then we will be able to send direct messages to each other Just go into your friends, select me and select message.
Have your doc appeal.
But yes I’m currently on the name brand because I just got three months free from the copay coupon I can help walk you through it. it’s different from the Xeljanz assistance there’s no income needs involved
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Permalink Reply by MindOverMatter on
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Hi NicoleT,
I have just friend requested you too... I hope you don't mind.
I have a couple of questions I wanted to ask you regarding taking tofacitinix? I'm currently on Genuine Pfiser Xeljanz from Turkey and have been for 8 months.. but its not cheep so I would like to move onto tofacitinix from Beacon... I have 20 boxes on order.
Thanks MoM.
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I love you!!! Blessing you are!
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I started Xeljanz on December 4th and in January shaved my entire head.... so we are in a very similar situation. I would address it with your doctor first just because it is good to be make sure you are monitoring things. There are side effects but so far I have not experienced any. Hair growth is a slow process for sure. I have had growth but have also lost some since... overall though I have more hair growth than loss. Although my hair growth is basically all white so far. For reference I was diagnosed with AA in July and by December it has gotten really bad. It’s tough to deal with... shaving my head helped but I understand what you are going through. At first the whole experience was surreal.... I still haven’t adapted to my new image but it gets better as the days go by.
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Fascination you have both RA and alopecia.
Look at the research of Dr. Angela Christiano, Professor of Dermatology and Genetics at Columbia University.
They have found that the Alopacia gene is the same as that of RA.
If you have RA, you can definitely get insurance to pay for Xeljanz name brand and you shouldnt have to go to beacon
More importantly if you have RA and alopecia, i would think you should definitely be on a JAK inhibitor like xeljanz to help your immune system gone awry!
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Yes they are 100% related and on the same gene!
If you want to friend me and pass me your email address I will send you a great article from Columbia universitys most recent magazine.
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Just messaged you a scan of the article.
Show it to your doc as he needs to be made aware!
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Hi Nicole!
I was curious how you got a hold of Beacon Pharm, I've sent them a slew of emails and haven't got a reply. I got one bottle of xeljanz but then my insurance decided they filled it in error. and now I'm searching for an inexpensive option.
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