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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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Hi, I would say find a dermatologist that specialized ion Alopecia. Initially we went to several dermatologists with my son and most had no clue. I did a lot of internet research and started educating myself as to the genetic origins and the processes in the body with JAK etc. I knew a lot more about the condition and latest research then the doctors we went to. It was very frustrating. We eventually found a dermatologist at Rush hospital in Chicago and my son was seeing that doctor for a few years. Eventually we found Dr. Amy Paller, at Northwestern and Children’s Hospital of Chicago who specializes in Alopecia and does research and speaks at conferences. Takes over a year to get an appointment and now he is seeing her for the past ~7 years.
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Permalink Reply by leah on
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Hi / hallo )
I think it might be good to check on costs, something that has been prescribed very expensive and followed with specialists and if you have get blood tests, etc. I had something where once month,( with older rx) had to get monthly blood work and special monitoring. In addition, if they can help you with coding with insurance.
Mine has denied me other things saying "cosmetic" and where to get it. Maybe easier there. In addition, heard if you are in contact with the prescription maker you can get a discount card.
Finally, if you take other things how the prescription could interact with. And since it was for arthris maybe helpful and if they know of any doctors with exprerience with.
Best und danke,
PS
These webinars might have helpful information.
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PATIENT GUIDE TO CLINICAL TRIALS AND DRUG DEVELOPMENT: PHASES AND TERMINOLOGY EXPLAINED!
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PS They say cover what questions to ask doctor, sorry thought had screenshot the info page. If can make it they make a vid available online after too
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Permalink Reply by Karen Grevious on
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Doctors are notorious for not being totally straight with patients about drug side effects. Sometimes because they have only listened to the drug reps and haven't done their own research.
Your best source of information is to look up the drug. https://www.olumiant.com/alopecia-areata
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Permalink Reply by AAB on
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I have experience with Xeljanz and Olumiant, both JAK2 inhibitors. I want to simplify the whole thing for everyone.
Both medicines work to reduce the immune response that causes Alopecia. If you use Minoxidil at the same time, you will have excellent hair regrowth for as long as you use them. The results are guaranteed because the medicines stop the very immune system pathway that causes hair loss.
I think Xeljanz is slightly better, but Olumiant is good enough, and it's the one approved by the FDA for Alopecia. Many doctors will not prescribe these medicines because they don't know them or know enough to be comfortable with them yet.
When you find a doctor willing to prescribe them, insurance may not pay because they consider Alopecia cosmetic since it's not life threatening. I know this is disheartening to all of you. And for most people, it's not sustainable to pay out of pocket the enormous price. In my country they cost around $1000/month.
Keep in mind that the medicine doesn't really treat alopecia, it just puts it in remission for as long as you're on the medicine. Of course if you're lucky your immune system will be retrained and Alopecia will actually go into permanent remission.
I started on Xeljanz just over a year ago, and midway switched to Olumiant. My hair isn't yet as strong and thick as areas unaffected by Alopecia, but getting there. People no longer can tell a difference.
I'm 60, and I had alopecia for 30 years. I first heard about JAK2 inhibitors in 2014, and I'm glad I finally had a chance to be on them and to be alopecia free after 30 years. I hope in time Alopecia will be recognized as the serious condition that it is and all alopecia sufferers get treated no questions asked the same way Rheumatoid patients do.
I've had no sides at all. I've always had high blood cholesterol. I know enough about elevated cholesterol not to be bothered by it even at my age, and not to even consider taking cholesterol reducing drugs. To me high cholesterol is just not a thing. I didn't hesitate at all about taking the medicine, and I'm more confident now about its safety. Remember that millions of other autoimmune patients like Rheumatoid take the same medicine.
Apologies for the wall of text. Hope this was useful.
Ali
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Thank you for sharing that information
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please note with Rogain if breast feeding thinking getting pregrant are or gettting someone pregrant there are risks with Minoxidil (Rogaine). maybe not related to you, just wanted to note cause had an accaiantance tell me about and them found was researching on something to help with Alopecia. and if anyone else is, to note.
The FDA lists Rogaine as a category C pregnancy drug. Drugs in this category haven’t undergone adequate human testing showing that they’re safe for fetal development, and animal studies suggest possible dangers.
Breastfeeding women should also avoid using Rogaine due to its potential to enter breast milk.
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