Starting my Journey on Tofacitinib

Hello Everyone.

I have been diagnosed with Alopecia Areata 15 years ago, since i was 13 years old. I have lost almost 60-70% hair on my scalp and half of my eye brows and some hair from my body, and my beard and mustache never grew fully in all regions, although i would say its 70% there. 

I recently got my hands on Tofacitinib 11mg tablets and i started taking them a couple of days back. 
Coming to my questions

1 - When is the best time to take Tofacitinib XR 11mg tablets? I take it now in the night before i sleep after my dinner.

2 - How long should i wait till i start to notice any changes ?

3 - Should i get myself checked up for anything, since i have heard Tofacitinib brings changes to Lymphocytes? 

Kindly answer me.

Any help would be greatly appreciated. 

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Replies to This Discussion

Permalink Reply by Pamela on October 18, 2019 at 3:22pm

Ask these questions to your Doctor.  If you didn't get these prescribed by a Doctor, I guess you take at  your own risk.

Permalink Reply by Nat on October 19, 2019 at 8:57am

Hi J,

Answer to your questions

1. Night is perfect.

2. Probably 2-3 months.

3. Before starting Tofa - usually get checked for TB and Hepatitis C. Then check CBC, cholesterol and ferritin every 3-6 months.

Good luck

Permalink Reply by Fingers_Crossed on October 21, 2019 at 7:15pm

I just started my xeljanz journey in August so I can tell you everything that I did. I am being followed by a dermatologist.

I had preliminary bloodwork done. You MUST check for TB and hepatitis . If these tests come back positive you need to treat them before starting xeljanz or else you could really cause yourself some harm. You also need a complete baseline bloodwork including: complete blood count, liver enzymes (alanine Aminotransferase and aspartate aminotransfererase), lipid profile(triglycerides, LDL AND HDL cholesterol  and total cholesterol), kidney function test (creatinine and eGFR).

Then you get the bloodwork checked every month for the first 6 months and make sure everything is ok. If everything is good over 6 months then frequency of bloodwork can decrease to every 3-6 months.

I had chicken pox as a child, so it was suggested that I should get the shingles vaccine before I start the medication. The shingles vaccine is 2 doses 2 months apart. I didn’t know this and it delayed me starting the medication a little bit but I rather be safe than sorry.

This disease is horrible and it has ruined my life, I have AU so I totally understand wanting to just take the meds and getting your hair back but I highly recommend getting a doctor to just follow your bloodwork at the least. Or even if you monitor your own bloodwork, it’s important to get it done to make sure It stays in the healthy range. .

I take 5mg morning and night so I’m not familiar with timing for the XR pill.

The TB test is not a blood test. It’s a patch test on your arm. 

I started seeing small white hairs very quickly like after 2 weeks but it’s been slow since. I am at 10 weeks and I just have very very thin baby hairs and white fuzz. Growing hair is a very slow process. It can take some people 3-4 months just to see the white fuzz so  be patient. Hope this helps :)

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