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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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Thanks Smitty!
And yesterday i finished my 4 week course of prednisone.
thanks again for your advice on this.
x
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Permalink Reply by kevin on
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hi retune life how are you? are you still on jak? I saw a specialist in France on jaks he explained to me that you have to be under long-term jaks to hope that the immune system resume the course has its normal, at least 5 years for him it is not no more risky than another treatment he explained to me that this is the best treatment currently i have seen two person on those forums have a complete answer and have stopped the treatment without any relapse it was the first users so this is 5 years he was on xeljanz
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Yeah am on ruxo now. It's been at least 1.5 years I think
We dont understand how immune system function. Lmao we dont even know where it is! In your foot? Stomach area?
Hoping your immune system resume to normal... I see what you mean. In my opinion, if u had just a few patches, you could stop the medication after 5 years and you have chances of not having a relapse but more severe cases I think chances are too high and eventually it's going to kick in.
Biologics are lifetime treatment. Doesnt matter if it's been 4 years or 12 years of treatment. Its for life. A patient with severe psoriasis on Stelara wont stop the treatment... so why should a patient with alopecia consider stopping? Cause our disease isnt as harmful as other disease so it doesnt worth taking the drug?
Hopefully some people started to treat alopecia like any other autoimmune disease. That's why we can have Jaks.
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Based yourself on other biologics and disease. RA, Chrons etc, are similar to alopecia. it's not rare that after 10 years u have to switch drugs. For example they go from humira to enbrel or remicade, etc... Some try to increase the dosage but some change medicine. Receptors of a naive (person with 0 history of treatment) patients are not the same as someone with 20 years of therapy. Doesnt matter if your doctor said anything about it, If u dont build any tolerance after 10 15 20 years, consider yourself lucky.
Of course Jaks are the gold standard for severe Alopecia.
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Hi return -life did you take xeljanz first and didn’t work then switch to ruxo with better results?I agree once you get thyroid,RA,Chrons disease your on medication for life.There is no cure for most health problems just treatments.Drug companies make more money with treatments.
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I did 3 things:
1) Xeljanz ( didn't work, only stopped nail pitting)
2) xeljanz again 2 months later I stopped first time ( worked 99%).
3) ruxo because xeljanz gave me acne. ( ruxo worked also)
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What dose of xeljanz worked for you and what dose ruxo.Isnt barcitinib the same as ruxo.And did you switch over immediately or did you wait in between.Im giving xeljanz a few more months and if my results don’t improve I’m switching to barcitinib.I am now on about 20 mg of xeljanz and having some regrowth
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hello football fan I start 10 mg xeljanz and 2mg baricitinib because I do not have a good regrowth hair baricitinib a half too short compared to ruxo so that's why I combine xeljanz and baricitinib and it will make a jak 1 2 3 sa will select all the voices I read an article or he want to tested a jak 1 2 3 I will monitor my blood work with attention
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Any luck with that combo?Keep us all posted on your progress.
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Id like to provide an update. I have regrown almost all of my hair on my head, maybe 75-85% brown hair. I cant grow it out yet because I dont like the idea of having patches.
Eyebrows are finally starting to fill in with the help of some injections to stimulate growth about six weeks ago. 5-10% brown hair and 50% white hairs on eyebrows.
60% brown hair regrowth of eyelashes.
check my last post for history, time Ive been on it, dosage. ect.
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