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Is there still hope?
I am fairly new to this website, but i have decided to try to reach out and answer some questions. I have had AA for 4 or five years. Started out very minimal and after some steroid injections from my dermatologist, it grew back fairly quickly. I had a few spots come and go and received steroid injections every month for about 6 months. It was all good ( only about one small spot) until i started my second year at college. I was not stressed to start (actually very excited), but as soon as i came to school my hair started to shed. I was put on prednisone about 3 weeks ago to stop the hair from falling out, but it has not worked. I am slowly tapering off the prednisone ( now on 50mg). I have also been using a topical JAK inhibitor ( Tofacitinib 2% topical cream) that i have been applying twice a day for the past month or so. I have had very minimal hair regrowth but there is still a little hair coming back just in one spot from what i can tell. My hair is still falling out and my spots are getting larger and larger. I probably have lost 40% of my hair and it does not look like it is stopping. I still have my eyelashes and eyebrows. I was wondering if there is there still hope left for me or should i plan to lose all of my hair? What other steps are there? Is it worth trying Xeljanz? What about topical immunotherapy or does that have a very large relapse rate?
I would very very very much appreciate any responses, the last few months have not been the easiest for me.
Thank you very much.
AC
Replies to This Discussion
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Permalink Reply by Return_life on
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nobody knows if u will be totalis or universalis.
I don't want to sound negative but your alopecia is aggressive. researchers also found out that it's easier to have regrowth when it's early in the phase.
I just don't understand why someone would hesitate to try xeljanz.
people with Crohn disease and rheumatoid arthritis are on biologics since a long time ago. We, alopecians, like to tell we are healthy so we don't need medications. but it's BS, we have a disease and its a big one.
decide based on what is important for you. personally I hate prednisone and methotrexate with its side effect.
if you can't live a normal life without hair well maybe it's a no brainer for you to try a treatment.
stay strong
ps: always remember that you have a choice. millions of people on this planet suffer from conditions where there is no medications.
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Thank you for the reply. Do you by any chance know the side effects of Xeljanz? Why are people so hesitant to take it?
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it's an immunosuppressor, a biologic.
Google it and see what it implies.try not to get what while on it.
most common sides are low energy level, acne and increase cholesterol.
for any questions do not hesitate.
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hi return life. what do u mean by its easier tonhave regrowth if earlier in phase? do you mean the longer u have it the slimmer chance of it growing back? Also I agree we have disease just like chrons eetc indnt understand why pple thinknwe are healthy and shudnt take xeljanz
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Permalink Reply by Cue Ball of Steel on
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Purely anecdotal - I was in a very similar situation, same age and all.
I think a big chunk of it has to do with age and hormones. So if you are hypothetically at the end of puberty, there's a sudden change in hormones, which seems to be an alopecia trigger.
I lost all my hair, eyebrows and eyelashes. If 40% of your hair is already gone in a few months, unfortunately there is a good chance the rest will follow. However if your eyelashes and brows are still kicking that's a good sign.
I was getting the steroid shots and they just stopped working. Sometimes alopecia gets too aggressive for current treatments.
Again, this is purely my experience and I am not a doctor. It may stop on its own. Best of luck to you, and remember that you'll pull through either way.
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I went through puberty quite a while ago (like 5 years). But it might just be the age. Also i have some hairs growing in some of the spots, but not all of them. Some are concentrated while others are random but they are definitely growing. Do you mind me asking what your current hair situation is?
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You may just have severe alopecia areata then. Are some spots untouched?
I am totally hairless everywhere, and it happened really fast, like a few months.
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Some spots are untouched but i am still losing hair at an alarming rate. Some spots that i can see are growing back
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Hey!
First off...oral prednisone for prolonged periods is REALLY bad for you and, in my experience and for everyone I've spoken with, it does nothing.
For the last 17 years, since I was 10, my AA was always patchy, easily hidden, and cortisone injections were effective. My current episode, however, I lost 80% of my hair over 6 months, and injections stopped working. About a month ago, I switched to wigs and recently shaved my head and I am totally honest in saying I have never been happier. It's SO FREEING to accept the disorder, stop worrying about it, and get a badass wig. The more research I did when losing my hair and the more doctors I saw, the more I realized that there really isn't a cure for this...after 17 years, I honestly know more about this than most of my docs. Once the hair passes about 50% I would say acceptance is key and will make you feel so much better, seriously!
I'm still navigating the bald life but my primary wig looks incredible and I actually love my shaved head, it's super liberating! I know that's hard to believe. But just imagine a life where you aren't worrying about this every day because you have an awesome wig, head scarves, a beautiful shaved head, cool hats, etc.
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That may be true however I met with a specialist in Boston who said that as long as you have some hair your diagnosis is the same. It is when you lose all of it that the diagnosis changes. I have started to grown back some hair so just waiting on the rest to grow however my hair is still falling out so maybe it won’t grow back. I guess we’ll have to wait and see.
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