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Olumiant and what to ask my doctor?
Hi all,
Im looking for a bit of advice as to what to ask my doctor.
I finally got a doctor's appointment (I'm living in Germany) and now that Olumiant is available on prescription here I'm ready to give it a try.
I have been struggling with alopecia all my life off and on and currently I'm pretty much hairless all over including eyebrows and lashes.
Apart from the alopecia I am healthy but have some arthritis here and there.
As most doctor's that I have seen over the years have basically no idea about this condition and that German isn't my first language would anyone know what to ask for so that I come away with a prescription?
Any advice would be helpful as I am not really good at communication when it comes to explaining my condition.
Thanks in advance.
Replies to This Discussion
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Permalink Reply by darius on
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Thanks for sharing and all great point. Let me add a few details from my notes. Do not have the original article link. But here is some more info https://www.cuimc.columbia.edu/news/key-locks-columbia-teams-breakt...
Quote:
Columbia University Medical Center used gnome-wide approach. By checking the DNA of 1,000 alopecia patients against a control group of 1,000 without it, we identified 139 markers for the disease across the genome.
We also found a big surprise. For years, people thought that alopecia was probably the stepchild of autoimmune skin diseases like psoriasis and vitiligo. The astonishing news is that it shares virtually no genes with those. It’s actually linked to rheumatoid arthritis, diabetes 1 and celiac disease.
Alopecia areata is driven by cytotoxic T lymphocytes and is reversed by JAK1 and JAK2 inhibitors which suppress immune system activity by blocking certain enzymes. (Janus kinase (JAK) family protein tyrosine kinases).
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I really don't understand the excuses (e.g., it's cosmetic and it's not life-threatening). You could argue that eczema and psoriasis are cosmetic, and they are not life-threatening either, but insurance companies still pay for you to have them treated. Many diseases, illnesses and injuries are NOT life-threatening (in fact, most aren't), but we still have them treated and insurance companies still pay for those treatments. So, if an insurance is giving you the "it's cosmetic and it's not life-threatening" song-and-dance, you really need to stand up to them! Remember, an insurance company is never ever your friend. They are in it for the money!!
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Permalink Reply by Maud Veloso on
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I had my first appointment yesterday with my dermatologist. Unfortunately, the doctor didn´t approve the drug Olumiant informing me that it haven't effect for androgenetic alopecia. Did anyone here with the same diagnostic that was approved and had your hair back?
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Permalink Reply by babashanti on
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Another quick update, the Dermatologist listened to me and sounded sympathetic to my condition but wouldn't prescribe me any Jaks as of the limited budget they have, and so have gave me referral to a skin clinic that can cover the budget costs ( Olumiant is available on prescription here in Germany)
So I am now waiting for a reply from the clinic for an appointment....things could be moving in the right direction for me at last..I hope :)
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Permalink Reply by leah on
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Thanks Babashanti. Also have you seen this discussion on this site "OLUMIANT Alopecia Community Watch – The Good, The Bad and The Ugly!" maybe have some tips too https://alopeciaworld.com/forum/topics/olumiant-alopecia-community-...
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Another update..I got an email this morning from the(specialist) Clinic and I have an appointment with them at the beginning of June....it's a bit of a wait but iv had this disease for so long that another few months of waiting for something to happen is not the end of the world for me , I will update once I have more info...
Also thanks everyone for the information and help, you gave me a lot of hope ;)
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babashanti I hear you with wait and hope time can go quick for you. Thanks for the update. best (ps summer will be here Soon =) )
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Another update.....
After the long wait to finally see the Dr at the clinic i was refused Omuliant because i was a smoker for 30 years (although i quit 10 years ago and have zero health problems) and because i am over 50 (55) .....the doctor said that because of these things i would be at risk of a stroke or heart attack and that a new warning was on these new types of drug and they are dangerous.
i feel absolutely awful now, and dont know what else to do anymore.
I think i will carry on with the minoxidil and derma rolling to see if it helps,but i feel deflated to say the least after having so high hopes and reading about the many successful cases while using a Jak inhibitor.
I am so sick and tired of this disease,what with all the ups and downs...i truly thought that Jak inhibitors this would be my way out of this...but i feel let down..
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hi again I was checking out the RX URl and found the following:
Lily the maker might know of dr in Germany etc. Also they have this program"A Companion in Care will give you a welcome call to talk about how Olumiant Together can support you and what to expect moving forward. A Companion in Care will also check your insurance coverage before you start treatment.
A Companion in Care will give you a call to be sure you received your first delivery of Olumiant.
To connect with a member of the Companion in Care team any time you have a question or just want to talk, call 1-844-OLUMIANT (1-844-658-6426).
Starting Olumiant may be easier with Olumiant Together.
https://enrollment.olumiant.com/copay/olumiant/contact-infoEnroll n...
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