Alopecia World
www.alopeciaworld.com
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
-
Permalink Reply by NicoleT on
-
Thanks for sharing.
Great to read your story.
Ive been on Xeljanz for 6 months.
I consider it to be the biggest blessing.
I thought i was never going to have another hair on head after the birth of my child.
Just saw your note about your doc not willing to draw labs.
Can you just go to another doc??
And just ask for labs to see about your general health.
You dont need a reason to check on your general health.
You basically just need to make sure everything looks good. Cholesterol. HIV. TB etc.
I also think it cant hurt to look for allergies and look at vitamin D levels.
My doc only cares about seeing updated blood work annually. SO long as Im not having any side effects, which I am not.
He's not concerned since I am in good health.
And he is at Columbia university. One of the 2 pioneers of the studies.(Columbia and Yale)
You could always see him in NYC. He has patients fly to him from all over the globe.
But yeah maybe just see another local doc and start with labs...
Keep us posted!
-
Permalink Reply by MindOverMatter on
-
Hi Nicole,
Thank you for taking the time to read my story... I’m really pleased to hear that Xeljanz is working for you...!
I wish that is was just that easy to go to another Doctor on the NHS...! As a worse case senario I could pay to have my bloods taken privately and also my a Private doctor explain and help with any issues.... but going down this route can prove to be very expensive... but it might turn out to be my only option.
I’m going to wait and see what the Dermatologist says that I’ve been refered to by my doctor.
I will keep you all posted with how it goes...
-
Permalink Reply by Johnny99 on
-
Hello MindOverMatter,
Thank you for taking the time to share your experience. I've been reading this forum intently for many months but this is my first time posting. Have you had any success in arranging blood tests? I'm particularly interested because I also am from the UK and am seriously considering trying Xeljanz - I can see organising the proper medical supervision being a stumbling block, however. Thanks for your input.
-
-
In reply to your question about blood tests here in the UK.... No..! I have had no help what so ever from my GP regarding getting my bloods checked.. They are refusing to do it as they can’t take any responsibility as this is a new and untested drug in this country...!!! I have been left with no choice but to have my blood tests done privately which can be quite expensive! £50 each time and I’ve had two already... my next test will be to check my colestorol and that is about £120. I have been on Xeljanz for 3 months now... the drug has finally started to kick in and I already have signs of fine white hairs on my face, eyebrows and my head all over... I have hardly had any side affects from taking it as well... so I can confirm it definitely does work. I just came back from Turkey last weekend with another 3 month’s supply of Xeljanz!
-
-
Hi mind over matter. Can I ask which company you are using to have your bloods checked
thank you
-
-
As I stated in my post on the 17th Feb... www.Citydoc.org.uk
-
-
I have attached a couple of photo’s to show my early hair growth at three months using Xeljanz.
-
-
Thanks for getting back to me so quickly, that's great that you are seeing some results already. It's unfortunate that you haven't been able to get the tests done on the NHS, but it's good to know that you've found a way to have them done privately - do you mind me asking which provider is doing the tests for you? If it comes to it I would be willing to pay out every couple of months too.
-
-
Johnny99 - In reply to your question... I’ve read that you only need to get your blood count checked every 3 months. There are lots of companies out there to do the tests for you but the one I’m using is www.citydoc.org.uk they are pretty good.. give them a call and they can arrange an appointment for your at a chemist near you to get your blood taken... the results take about 3 days to come back.
-
-
Hi mind over matter. Hope you don’t mind me getting in touch to ask if you havd any luck with blood screening ? My dermatologist refused outright. Hope the treatment is continuing to go well. Are you continuing to see results ?
-
-
Hi Magmck, thanks for your comment... yes... my blood tests are going well so far... as I mentioned in my previous post I’m am still having to fund my own private blood tests as the NHS is refusing to help. I have now been on Xeljanz for nearly 7 months... it’s going well so far. I have nearly got both of my eyebrows back! My facial hair it doing well too... but the hair on my head is a lot slower than I would have hoped.
-
-
Thanks a lot for the info, I'll bear that in mind if and when I decide to go for it. I hope that your good results continue and that you see some significant growth soon!
- ‹ Previous
- 1
- 2
- Next ›
© 2024 Created by Alopecia World.
Powered by
