Tofacitinib Results after 7 Month

HI Guys,

I'm on Generic Tofacitinib from Bengladesh.

On Aug 10, I increased doseage from 10 mg to 15 mg per day.

I started March 1, with not one hair on my head. no eyebrows very few lashes.

Here is my pic today as compared next to 4 weeks ago.

Right Side:

Left Side:

Baseline March 1:

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Replies to This Discussion

Permalink Reply by NicoleT on October 5, 2018 at 10:19am
HI Edith,
No. Thankfully no side effects for me!
Permalink Reply by Alopecia_85 on October 5, 2018 at 5:13pm

hello a question can children also reverse this method you used to? tell me a little about this product. children from 3-6 years I wonder.

Permalink Reply by Steve on October 9, 2018 at 4:39am

Hi Nicole T, 

Can I ask if you were taking 10mg, how many pills you were taking throughout the day? I am from the UK and this drug is not yet available, but I am tempted to order this from Beacon and try it out. Again, a little nervous as there would be no doctor guidance. Is there anybody else on here taking this generic drug without the guidance of a medical professional?

Permalink Reply by magmck on October 9, 2018 at 6:33am

Hi Steve 

ive also been toying with the idea but don’t think my  husband would let me unless I was being supervised by a doctor. :-) It’s unlikely that my GP will monitor my bloods.  I was attending  A dcp clinic a number of years ago and have  considered contacting the  doctor to see  if she would monitor me for side effects. However I’m not confident that she would. There seems to be very little data about likelihood and severity of side effects other than the very helpful anecdotal discussion on this site. I’m occasionally in Manchester and thought the doc who carries out the research into alopecia there Ralf Paus might be worth contacting to ask if he would monitor or even contacting Dr King at Columbia who are pioneering treatment in the states to verify Tofacitinib.perhaps the latter might influence your docto I’d i ever felt brave enough to try it - mine. 

Best of luck with it 

Where in the UK are you ?  

Permalink Reply by Steve on October 9, 2018 at 10:05am

Hi magmck, 

I understand the hesitation and it is very similar to mine. I recently seen a Dermatologist and he said that JAK inhibitors are having great success, but sadly they are not licensed in the UK for this condition so he can not give me it. I live in Edinburgh, Scotland and I believe the drug is licensed here for the use in arthritis. I am in the same boat and don't think my local GP would help me in monitoring my drugs. I contacted Beacon today and they replied within the space of 30 minutes telling me the prices etc. I'm tempted to buy some at 10mg a day for a 3 month period, and monitor my reaction to it myself. However, I don't know if this is a dumb thing to do but the urge to try the medication is greater.

Where in the UK do you live? 

Permalink Reply by NicoleT on October 9, 2018 at 7:42am
HI Steve,

I was taking 10 mg per day.
1-5mg pill in the am and 1-5mg pill in the PM.
In Aug I added a 2nd-5mg pill in the AM.
Permalink Reply by Steve on October 9, 2018 at 10:09am

Thank you Nicole. I emailed Beacon this morning and they replied very fast with details on prices etc and how I can buy them. I am tempted to try this for a 3 month period at 10mg a day to see my response but I have anxiety as I will have no doctor interaction to check my bloods or give me guidance as this is not licensed in the UK for this condition and I won't have a prescription. I was advised by a family member who is a nurse to still inform them of my plans.

Permalink Reply by magmck on October 9, 2018 at 12:05pm

Hi Steve. 

I live in Glasgow. I think the advice from your family member is useful, perhaps

the gp would monitor your response to the drug without taking responsibility for your decision to take it. I would be interested to know  the cost of drugs from Turkey also.  Have you calculated the cost of a 3 month supply from beacon pharmacy ? 

Permalink Reply by Steve on October 9, 2018 at 3:34pm

Hi magmck, 

You're close to me! I did calculate, and it seems it would cost me around £120 if I was to take 2 x 5mg tablets a day for 3 months. Beacon informed that the tablets are $15 a box and it would be $65 for shipping. I think I may put in an order tomorrow after I have done a little research and contact my GP by the end of this week.

Permalink Reply by magmck on October 9, 2018 at 3:57pm

Thst seems much cheaper than I thought it would be 

Permalink Reply by Steve on October 9, 2018 at 4:08pm

I know, I thought the same and it adds to my hesitation. However, the progression of NicoleT and her using it has made me curious...

Permalink Reply by Steve on October 9, 2018 at 3:35pm

Is anybody taking this drug without doctor guidance or monitoring?

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