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

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Replies to This Discussion

Permalink Reply by Football fan on June 28, 2019 at 1:46am

Hi Nicole did your shedding stop.

Permalink Reply by NicoleT on June 28, 2019 at 6:31am

Still shedding lots of patches.

Ive got up to 20 now which i really didnt want to do, but fingers crossed all goes ok.

keep you guys posted

Permalink Reply by singh on June 30, 2019 at 1:35pm

Hi Nicole,

I pray your shedding stops! And regain all your hair back!

i seen someone else who got shedding an they upped there dose again and once the immune system was stable it grew back!

Some people can go into remission to get off the tabs but my dr/derm said to me it’s a gradual process and he personally would keep people on them for Atleast 24 months.

Kind regards 

Permalink Reply by NicoleT on July 8, 2019 at 10:39pm

Hey Singh 

Thank you you so much for this message.

It’s really thoughtful and encouraging and it means a lot to me. 

Thanks again

N

Permalink Reply by singh on July 9, 2019 at 5:05pm

Your welcome Nicole! I hope your regrowth is coming along well.

Kind regards 

Permalink Reply by Devices561 on July 9, 2019 at 7:53am

Hi Nat,

i was able to make contact with the folks at beacon and seriously consider ordering from them. Does your doctor at Columbia have any opinion on ordering generic from this company? ie do they have many patients using theirs product or have any concerns/warnings?

thanks,

TS

Permalink Reply by Arsenalauba on July 29, 2019 at 10:40am

Hi Nicole!

Have your shedding stop?

Hope everything’s working, god bless.

Permalink Reply by Nat on July 9, 2019 at 7:18am

Hi Magmck,

I was taking Prednisone daily. 60mg/day -first month, 50mg/day - second month. By the end of the second month I developed a moon face. It took me one more month to get off Prednisone.

Good luck 

Permalink Reply by magmck on July 9, 2019 at 10:41am

Thanks Nat 

i appreciate the information and will discuss with my GP if I can get off the starting block and get him to agree to monitor my blood.  I think it makes sense to use steroids intensively for a period rather than increasing the dosage of Tofacitinib .  Looks like you have a good doctor ! 

Permalink Reply by Nat on July 9, 2019 at 12:10pm

Well, I don't have a good doctor. I bought meds myself and decided on the dosage based on the people's experience (from this website)-15 mg of Tofacitinib. I saw a doc from Columbia once who ordered the initial blood work. I can't find any local dermatologists who has experience with AU.

Also, Quest diagnostics offers some blood tests without a doctor's prescription.

My point is - people on this site have more knowledge and experience than most doctors. You can help yourself! Good luck!

Permalink Reply by magmck on July 10, 2019 at 1:04pm

Hi Nat -

Well done you.  I’m going to do the same.  I’ll start Tofacitinib from Beacon over the next few weeks. Hopefully my doctor will

agree

to monitoring blood. If not I’ll see if there’s a UK counterpart  to Quest  hoping that my doctor will agree to me having the shingles vaccination ( if not I’ll buy privately )  I do want to try steroid pulsing as a coffee therapy so will need to ask my GP to prescribe!

Thanks for your help ! . 

Permalink Reply by Nat on July 9, 2019 at 1:43pm

Hi, I saw a doctor from Columbia only once. They didn't want to discuss the meds from Bangladesh. The nurse told me that there are some other sources to purchase affordable Xeljanz. But they wouldn't openly discuss the illegal meds.

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