Ruxolitinib Medication

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Taily Says:

Hi, Can someone please help me? i have been on clinical trials of Ruxo for 8 weeks now... i am the 1st of my kind to be put on this drug who has multiple auto-immune diseases and a mutation in my genes. I was put in this drug to try correct alopecia and it has been a great success. Not only has this drug helped me with my hair loss but has also help with my general health. my only issue is my menstrual cycle has stopped and i'm trying to find out if it is connected to these medication or just a coincidence? Many thanks in advance

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1
RN with alopecia Says:

You would need much more detailed information. Age? Recent hormone changes/starting and stopping birth control or other medications? Recently lose/gain alot of weight? How regular is your cycle normally? are you pregnant?


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Taily Says:

I am 29 and my normal cycle is 35 days, i am not on birth control since sept last year (8months) and i'm not pregnant as i've done a home test and had a test before going under anesthetic 2 weeks ago for a scope . the only recent changes to my medication is starting this new drug (ruxolitinib) 8 weeks ago.. last period was just over 6 weeks ago.. do you think it is related? my consultant wants me to continue for another 2 weeks but if it is affecting my reproductive system i'd rather live with Alopecia

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3
RN with alopecia Says:

It is not usually concerning to miss one period, as I was hinting at above, there can be many reasons to miss one. I also forgot to mention stress. I agree with your consultant because after 2 weeks with sign, you would be working on missing your second period. If you miss two periods, don't panic, but it would be a good idea to see a doctor incase it is something more serious.

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4
RN with alopecia Says:

For community learning, was there a result? Did you continue with the Ruxo?

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5
Taily Says:

My GP ran bloods for my thyroid and hormones which all came back with no issues... my consultant had stopped the Ruxo.. a week and a half ago however he does want me to start taking them again but i still have not had my period and therefore i am reluctant to go back on ruxo as i am still very much in the dark. i am now on day 56 of my cycle would you recommend any other tests i could have done? i am going out of my mind as i wanted to start trying for a baby after the 12 week course of ruxo :(

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6
Valentina Says:

Hi, I would like to know how would be possible participating to the trial for testing the ruxotinilib on patient with alopecia areata. I've had this disease since I'm 3years old and now I'm 29 and I really wanna try it....if anyone knows anything please let me know! I know that the last news was from few days ago but I'm not sure every dermatologist could prescribe it....I live in Miami and I'm followed by Doctor Tosti. However she never told me anything about this drug....

Thanks a lot!

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7
Taily Says:

I am sorry i do not know how you would get on a trail in the states, i am from Ireland and i know i am the 1st of my kind here to be taken it for Alopecia... i am writing to you to say this is an amazing drug and well worth sourcing, i have a full head of head now after only taking the drug for 12 weeks, it grew back nearly over night thick and strong.. i am so happy i took the risk it has been well worth.. wishing you the best for your journey to beat it!!! :)

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8
Valentina Says:

Thank you so much for your reply!! Actually the doctor who did the research is in NY and the drug it should be available in USA but I don't know if any dermatologist can prescribe me that. How come you happened to try it? Do you know if now at least there it can be prescribed and so you can have it for this problem? Thanks a lot again and I'm so happy about the result you got and the fact that this drug can really heal people who have this disease!! I really hope to be able to get it soon!!

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9
Taily Says:

My dermatologist in Ireland prescribed it to me and it was sourced by my local pharmacy quite easily.. Not sure about the USA but here the drug is used to treat bone Marow cancer.. I suffer with multiple immune diseases and my dermatologist believes this drug has corrected other issues of mine also (I do agree I have been in good health since) and therefore it is been reviewed to maybe replace some of my other long term medications so yes I believe it will be available for me in the future.. I assume if dermatologists here can prescribe it they can in the USA as we're way behind you guys :) I hope you find it easy please let me know how you get on.. Best of luck!!

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10
Valentina Says:

Oh really? I'm trying to see if there's a way for me to have it and I still haven't gotten a reply from my dermatologist as she's vacation I guess. In the meantime I know hat even here it should have been approved for hat type of cancer but actually I just noticed it is VERY expensive and even though I have a good insurance I'm wondering if the insurance will cover most of it since it's approved only for that cancer and still not alopecia. It's more than $9,000 just a refill of 60tablets!!!!!! Thanks again for all your support and for having gotten back to me giving me this amazing news. If I can bother u again I'd like to know if it is expensive as well there as a drug...I'm actually Italian and I'm here for work so it's be interesting to know! Thanks a million!

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11
Taily Says:

Wow 9K that's crazy!! I'm sorry I've no idea what the cost is lucky I didn't need to pay.. hopefully now that it has been published for alopecia it will soon be approved as a drug for alopecia.. Such a huge breakthrough lets hope it becomes affordable for those who need it!!

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12
Valentina Says:

Yep! It is....yes you are really lucky for having had the chance to stay taking it and especially for free!! Thanks again!! Let's hope now it will be approved soon for alopecia as well and insurance will cover it...!! ;)

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13
Valentina Says:

Hey Taily, I'm sorry for keeping writing but I think you can understand me if I try to do my best to have more info about this epic discovery.
Would it be possible for you providing me with your dermatologist name and(if you can)email? I'd like to have the chance to get in contact with him/her for few info.
Thanks a lot!

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14
Bebel Says:

this medication causes anemia. pay a visit to your primary doctor. (missing cycles could be a sign of severe anemia)

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15
Valentina Says:

I'm aware of that but however is very less likely that if you are healthy you can develop a dangerous side effect. Of course this medication has to be prescribed by a doctor and I'm in cure with a well known dermatologist as of now and currently taking methotrexate for 8 months and I'm aware that this medication is toxic too (she prescribed it to me since new sedimentation proofed for some was working) and my blood tests are perfect so I'm confident and willing t pursue this lath and try to have a prescription for the ruxo because for me it's the only hope. I 've been struggling since I was 3. I hope to find a way even to afford it since even with a good insurance it's still extremely expensive.

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16
Jo Says:

Hi Taily, could I ask the dosage of Ruxo that you were prescribed? Also is your hair still ok?

Hope you were succesful with your plan to conceive!

Thanks in advance

Jo

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17
Giggi Says:

Despite The fact that searching on The website i find out that this drug is not godo to treat alopecia androgenetica, could someone try it to Reverse hairloss of people who suffer from it? I would like to try, could you help me please? I thought that some doc or scientist could say that it's not good for alopecia andrò genetica because of The propecia business. Please you can understand what this kind of disease causes... Help me

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18
lin2232 Says:

Taily, I am just reading your blog now about Ruxo and how it's reversing or reversed your alopecia. Today is 2/14/15 and your original post on 5/13/14 (after being on it for 8 weeks) which makes it about 11 months since you started Ruxo. Can you please provide an update? My niece is 15 and we are considering Ruxo for her (her AA progressed to AU this time around, after having battled AA on and off since 8). I read that Dr. Angela Christiano says there are no reported adverse effects from Ruxo for Alopecia in her preliminary study. They are in the midst of trials now but time is of the essence for us as you can imagine. Your feedback has given us immense hope!!! Please let us know how you are today, how long before your eyebrows, eyelashes grew back, any side effects, any supplements you also took, etc. ALSO - my niece was diagnosed with Hypothyroidism at the same time. Did you have this or something similar and as you wrote, did Ruxo cure this??? THANK YOU!!

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19
lin2232 Says:

Taily, I am just reading your blog now about Ruxo and how it's reversing or reversed your alopecia. Today is 2/14/15 and your original post on 5/13/14 (after being on it for 8 weeks) which makes it about 11 months since you started Ruxo. Can you please provide an update? My niece is 15 and we are considering Ruxo for her (her AA progressed to AU this time around, after having battled AA on and off since 8). I read that Dr. Angela Christiano says there are no reported adverse effects from Ruxo for Alopecia in her preliminary study. They are in the midst of trials now but time is of the essence for us as you can imagine. Your feedback has given us immense hope!!! Please let us know how you are today, how long before your eyebrows, eyelashes grew back, any side effects, any supplements you also took, etc. ALSO - my niece was diagnosed with Hypothyroidism at the same time. Did you have this or something similar and as you wrote, did Ruxo cure this??? THANK YOU!!

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20
Herman Says:

Been suffering with aa since I was two years old. now I am 47 and still have this terrible desease. just wanted to know when will I be able to get ruxolitinib for my problem.

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