Source
r/alopecia_areata•
soyrizotto

Scared of jaks

My dr said she can't do steroid injections anymore because the loss is too widespread. I do have slow regrowth but the loss is just spreading more.

She ordered blood tests so I can start jak inhibitors...I'm just scared. I'm not typically scared of medication. It's just the way I see it, I'm taking a pill in my youth so I can have hair, I'll be on this pill forever, and there's a chance that a decade in the future I'll get cancer because of this pill. I know I'm catastrophizing, but it's hard not to. I'm overall healthy now besides alopecia. I scared I might make myself sick for the sake of having hair.

I'd appreciate any input, if anyone felt similarly, or how you came to decide that yes you'll take jaks.

Posted Nov 8, 2023, 5:24 PM UTC

76
hdkdbi•

Only you can make this decision. Ask yourself these questions: Do you trust the scientists and FDA? Is AA destroying your life or are you getting along ok with hair loss? Career depression loneliness shame embarrassment stress etc. constant beating on your emotional mental and spiritual health will eventually impact your physical health. It most certainly is effecting your quality of life now or you wouldn’t be here asking for advice.

Personally I would try JAK if I was young and strong knowing now how awesome life is when you are young confident and happy. But I would work with a functional/ naturopath doctor at the same time and try and fix the root cause permanently and then try and get off JAK. 100 years ago people were skeptical and untrusting when aspirin was first available.

5
matt1164•

There’s some good fb groups- jak inhibitors fir aa. You should join them. There’s some people who lower their dose once they grow their hair back. Also, is your insurance covering the medication? It’s quite expensive

3
IfWishez•

Hi, I totally understand your ambivalence. I decided that taking a JAKi for hair wasn’t worth the risk of the many potential serious diseases. But that’s me—I have lots of lymphomas and other cancers in my family, which increases the chances of getting very ill. Who can say for sure whether this is catastrophizing or being smart? Only each individual!

Like you, I didn’t relish the idea of staying on the drug forever. How can FDA, etc, say what 15, 20, or more years of nonstop use might do to the body?

Have you heard about the trial using Dupixent for AA? It’s a drug for asthma, eczema, et al, but it’s a monoclonal antibody, not a JAKi. For all I know, maybe a monoclonal antibody is dangerous too! IDK, but I am looking into it.

2
hyperdementia•

I said no to JAK inhibitors but instead am taking hydroxychloroquine, and I have a ton of new growth. I know everyone is different, but other classes of medication can work.

2
Ok-Safety214•

Have you thought about maybe seeing a functional dr and figuring out a route cause? I think steroids don’t work on many cases because it’s just a bandaid.

1
Maleficent_Low_3287•

I think you should consult a Functional/Ayurvedic doctor. If you don’t have alopecia from childhood then most probably there’s an underlying issue that is triggering your condition. They’ll help identify the root cause and treat u for life.

1
iTurniScore•

You shouldn't be scared of Jaks. The latest studies show that the cancer only happened when combined with a TNF inhibitor, over 50 and had one major cardiovascular problem. Other than that it's the same as placebo. Based on a large scale study.

Its the same with the rest of these scary side effects.

1