Alopecia World
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New user to this forum and Need some advice regarding taking Xeljanz
I first got Alopecia Areata when I was 15. I think the pressures of school took its toll on me a little… I lost a big patch of hair on the back of my head but it did eventually all grow back white and then eventually turned black after about a year. I thought this would be my first and last encounter with Alopecia but it actually came back after I got married at 33. After the birth of my first child It came back with a vengeance. This time is was Alopecia Universalis and I’ve had it since.
I have had AU for about 10 years now. I lost about 95% of all my hair on my body and it did not grow again until about 3 years ago, just after I got divorced. I would say that the divorce took some weight off of my shoulders and I was feeling much happier and better in myself. Over the next 3 years I gained about 80% of all my hair on my head. 10% Eye lashes and 10% eye brow and beard. It was growing back at a really slow rate but it was growing and I held the belief that it would all eventually grow back... but my belief was short lived as it all fell out in a matter of days back in May this year… and I haven’t had 1 single hair grow back since… This was all brought on by a stressful letter I received from my Ex-wife. Moral of this story – Don’t get married (Only Joking) I’m not afraid to admit it but I now only have the hairs under my arm pits left (about 5% hair left on my body) BUT I will NEVER be defeated and I will NEVER give in to Alopecia… I refuse to allow it to get me down or get the better of me. I am very fit and healthy so I shouldn’t complain.
I am grateful, and realise how lucky I am…. This disease is trivial compared to many other diseases around today. I have lost both of my parents to Cancer in the last 4 years so I do appreciate how lucky I really am!
I can’t imagine how difficult it would be for a woman to have Alopecia. For men is not that hard, as going bald is something that is expected as a male…! Having no hair on my head is something I have come to accept but it took me a few years to eventually accept it and remove my cap that I wore every day… The real thorn in my side was the lack of eyebrow’s and eye lashes that made me look strange. I started to use glasses even without much need of them and I have now been wearing them for the last 6 years!
The other real thing that Alopecia striped from me was, my identity… and I’m referring to my Italian Heritage...! I am English and was born here in the UK but both of my parents were from the south of Italy and so I had very dark Italian features – Thick Dark Brown hair with bushy eyebrows. At first, for a few years absolutely no one would recognise me with my glasses and for a while I liked it this way… but having your identity striped from you is NOT a nice thing! Having no hair / facial hair, also made me look a lot younger than what I really was...! People even today think that I’m in my late 20’s – early 30’s when I’m actually 42.
I am now divorced after 12 years of marriage and I certainly don’t blame Alopecia to the demise of my marriage but I do think that it did play a big part in it…!!! The ex-wife had no sympathy for me and just asked me to get on with it… I actually think she was the cause of it and probably made it worse. I actually think that she also went off of me because I had it…! I am not just saying that she wasn’t as attracted to me as much as she was but she also didn’t like the person that Alopecia had turned me into with my low self-esteem and depression it had given me.
I have now been single for 4 years but I am now definitely in a better place without any depression and much happier without her!
I have spent a considerable amount of time of this forum reading about Xeljanz and its affect’s good and bad and I have made an informed decision which is my own personal choice to start taking Xeljanz and see if it does actually help in turning my life around like it has for many other’s on this forum!
I now have 3 month’s supply to start with which my sister bought me from Turkey… but I won’t me starting them yet until I have spoken to my GP and also had my blood tests…
It is hard to believe… but here in the UK there is hardly any information or help with regards to taking a serious drug like Xeljanz… So, I’m hoping that some of you guy’s on here who have experience with taking it might be able to advise or help me with what I need to do to start?
That's my first post complete... Thank you for taking the time to read this...
Replies to This Discussion
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Permalink Reply by MindOverMatter on
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I have now hit a major stumbing bock...!!
I made an appoint today to see my GP to discuss taking Xejanz and also about requesting regular blood test every three months to determine if I have low white / red blood cell count.
But my GP informed me that as I bought the medication from outside (Turkey) of the UK she is not allowed to help me in anyway due to strict EU laws... She informed me that she had never heard of the drug and that she, had hardly any information regarding the drug...! She said that no one at the practice here had ever used this drug and she said that she would not even be aloud to let me to have regular blood test as if they did it would look like they are consenting for me to take this drug.. which they will NOT do..!! If anything was to happen to me then they could be held responsible..!! She told me that I could try to write a long letter to the practice manager exsplaining my whole situation and that you woud take full responsabity and he coud put it forward to a commitee to see that they thought...! but it doesn't sound like I hold much hope...!
The question I woud like to ask is... Does anyone else here in the UK have the same issue and if so... How have you managed to get your bloods checked every three months? Are you doing this via private medical care and if so where?
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Permalink Reply by AlopeciaAngel.com on
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Have you tried the natural and holistic route? I only suggest this route, because it has given me results. After two years of trial and error- I have my hair and health! (Thank the Lord and the Heavens) and am now on a mission to help others too. I have posted on my IG account, (same name) with so many articles about people doing treatments, meds, and all with no results or horrible side effects that have led to other illness and issues. I wrote a book and researched so much and am please to share that my client also see results. Try going holistic. It will take time, but your body will heal from the inside out. Don’t ever expect overnight success. No pill will give you that, bu rest assured, mother nature and natural healing has no negative side effects. Wishing you all the best. www.alopeciaangel.com for more info, pictures, testimonials, my story with pics and much more!
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Hi AlopeciaAngel, thank you for your reply to my post... your comments sound interesting... Are you referring to using a homeopathic remedy...?
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HI, Thank you for the response. Yes, I am referring to using a holistic method, identifying all areas of your health and well being, to improve all areas, with use of homeopathic and natural remedies and also giving you the tools and knowledge to know the difference. I just posted today, on my instagram and facebook feed, that sometimes we consider certain foods healthy when in reality its doing more harm than good when it comes to having an auto immune disease. Protocol and procedure is a bit different. There's more to it, then just switching up diet but this is a targeted area of course. Would you like to learn more? I am happy to have a Skype or FaceTime call to explain more if you'd like. Hope this information helps.
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Hi again Alopecia Angel, I agree with you... finding a way to be heeled from the inside... would be an answer to finding a cure for Alopecia suffers... Lets hope they find it one day! Wishing you all the best too..!
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Thank you Mind over Matter. We are all so different and the foods, environment and stressors in life all effect us differently thus, I highly recommend looking at each area of your life like I noted in my book where you can make adjustments for you and family. I have clients that only after a month or two, already see hair growth and major changes in vibrancy and overall health. I had a client who reached out and gave me a testimonial yesterday. She's bald. Has universalis. We had a call, and I walked her through my book and spoke to her specific needs. She's read the book and implemented. In less than three weeks-she now has eyebrow hairs growing back..... I am starting a group coaching class October 15 which will walk you through how to heal, how to implement, and how to start TODAY so that in a couple weeks you start to see results. Change is needed and effort is needed, but this is the first step to regaining health and hair just like the title of my book! I am happy to give you more info on coaching if you are interested. October 15. Next class starts... 2 sessions a week for 2 months! All LIVE and Interactive. Nothing filmed or taped. Hope this helps. www.alopeciaangel.com
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Permalink Reply by singh on
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Hi,
A GP doesn’t know much about xeljanz inhibitors how ever more dermatologist are getting more familiar with them! So ask your doctor to refer you to a Dermatologist ( try and research a good one who especially has interest in alopecia ) and then am sure they will be willing to check your blood test regularly.
hope that helps mate
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Thank you for your great response to my question... This exactly what I am trying to arrange through my GP at the minute...! Let’s hope I get refered to a helpful dermatologist!! Unfortunately as you’ve explained My GP or the entire practice of Doctors have no knowledge what so ever of Xeljanz... and they are not able to help with the monitoring of my blood count what so ever...! They won’t and can’t take any any of the responsibility of the monitoring of my condition if it was to deteriorate..! So at this stage I am not currently able to start taking my course of Xeljanz :0(
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I have an annual supply of Xeljanz at home for emergency response.
If I would need to use it I would not tell my GP that I use it, but would request
the tests that are usually done when RA/AA people take it. You will find them, if not see Donovan’s
webpage.
And can someone kick out this AlopeciaAngel? It is disgusting to use this forum for business.
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Hi Nor75 can I ask what medication you are taking currently or have taken as im
intrested in all possibilities. And I agree why are you preying on people with Alopecia? Please don’t advertise your business on here. In terms of diet I would say yes eat healthier do yoga etc but honestly these types of companies are just preying on us alopecians and is partly why a lot of people want to keepalopecia out of the lime light for their profits.
Kind regards.
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Hi Singh, I am using Anthralin fo 14 years now with great success. But daily and
screening my head every day. When I have bad episodes, like every four years,I even use it twice daily. It is the classic treatment. This year I got Simvastatin/Ezetimibe in addition, which is really slowing down the power of AA. It is effective in patchy or freshly diagnosed AA, stabilizing the disease. It is not a growth thing (at least in me) but it works very well, supporting my work with Anthralin.
i have patchy AA for 27 years now. Been in a 5 years remission in between (Golden Years).
For me AA does not matter much, as I have power over it. People cannot see that I have AA.
One of my sons (6y) developed AA as well this year in April. It was a nightmare for me. I got it under control as well three weeks ago but it is much more challenging to treat then mine. He has a very bad prognosis, given his age, having a first line relative with AA and the presence of a thyroid autoimmune condition. HORROR
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I may add that my patches grow back within two to three weeks and they disappear in one go. So for ages I was wondering why people do not simply use it as well. But it was likewise not working in my son as it does in me.
That was a very bad experience. Also I live in Norway and medication for non-common diseases is not easy to get. So Anthralin was effectively not available when my sons AA broke out. So we sat there with a sick child, his body destroying itself and without medication. I strongly believe that many AAs only get resistant to treatment when they are not “attacked” immediately. After four weeks we finally got the medication, which was only softly effective in my child. The despair was unbelievable. In Norway SADBE and DCP is not even permitted. So I am really wondering how other people her treat their children or themselves.
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