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.

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Permalink Reply by kevin on February 6, 2023 at 9:16pm

hello abbs I have been on jaks since 2018, I added cortisone for 1 year it worked well but very little on the hair.

I tried tofacitinib, olumiant, and now abrocitinib 200mg a new one from pfizer jak 1 is the most effective.

Are you taking minoxidil orally or on the skin?

how long does minoxidil take to work

Permalink Reply by AAB on February 1, 2023 at 4:25am

Hi. Been struggling with alopecia for 30 years so I know how you feel. After a year of Xeljanz then olumiant (both are same medicine) the alopecia is completely gone.

My advice, if the doctor is willing to prescribe it, don't hesitate about taking it. It's important to also use Minoxidil 5, because Olumiant without minoxidil will not grow hair. 

The issue of course is not knowing when to stop taking the medicine. 

Good luck

Permalink Reply by Gary Sherwood on February 1, 2023 at 2:56pm

Hello, 

In addition to the good advice you're getting on this chat, I would recommend you watch two of NAAF's recent webinars on the new treatments. 

January 2023: JAK INHIBITOR TREATMENT FOR ALOPECIA AREATA: UNDERSTA...

 

June 2022: ALOPECIA AREATA TREATMENT UPDATE: A NEW FUTURE AWAITS

NAAF's upcoming new website will also have an FAQ for treatments.  Stay tuned!

Permalink Reply by JUDITH on February 1, 2023 at 6:35pm

Hi. I recently stopped taking the medication after being on it for six months. Like you, I was in good health. I recently went for my yearly physical, and my blood work was concerning. I had high blood pressure, and cholesterol was high, and they found two lumps on my left breast. The medication is so strong that you must go Monthly to get your blood work done. Please do your research; it would take almost two years to see a big difference.  I hope you have a different outcome. Good luck!

Permalink Reply by desperatedanyell on February 2, 2023 at 9:33am

Are you in the UK?

Permalink Reply by AAB on February 2, 2023 at 2:41pm

I'm 60. I have complete growth after one year of use with zero side effects. TBH high cholesterol isn't as scary as it's made out. Millions of people use JAK2 inhibitors for Rheumatoid and other autoimmune issues. If you're psychologically impacted by AE consider resuming the treatment. 

Permalink Reply by Terrance Williams on February 7, 2023 at 12:00pm

Did you have A.U? If so how long did you have it? How many months was it before you started seeing hair growth?

Permalink Reply by leah on February 7, 2023 at 11:36pm

Sorry to hear Judith, I hope heal quickly from all. And lumps turn out to not be anything serious. Good thoughts your way!

Permalink Reply by babashanti on February 2, 2023 at 5:31am

Just a quick update..the doctor will not prescribe any JAK as they said that I need to find a dermatologist who has experience with this issue, and I need to find one that deals with this disease and not just a beauty treatment dermatologist..I'm pretty much feeling deflated as I have been through this doctors process before and had no good results.

Anyway, I called around and found a dermatologist in another city that might possibly have some experience ( it sounded promising on the phone)

and I have an appointment for next week as someone cancelled..so let's hope that something comes of this..and thanks again for all the replies and information, this is a fantastic and supportive group and I'm happy to be part of it.

Permalink Reply by leah on February 7, 2023 at 11:34pm

thanks for update, sorry hear about the 1 dr. that's good resiliency to keep trying and good a quick cancelation with another. I found some doctors you can sometimes email too. Also with Alopecia can be a thing keep researching and reach out for support on. Yes is great group. Please keep us posted. 

Permalink Reply by leah on February 7, 2023 at 11:40pm

Ps have you seen if there any specific groups in Germany that maybe have folks that have derm recommendation too, just a thought. 

Permalink Reply by Nubian8 on February 2, 2023 at 7:07am

Hi is there anyone in the UK using this treatment? 

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