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chicanery

My (F19) accutane telogen effluvium journey (PICS)

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Hello guys! thanks for good vibes, good news spacecore!! finally some one wrote a good news!! 
My baby's hair still there (frontotemporal), shedding also, so patient!

Thanks also for your sharing Undone515, let's keep waiting :) 

As i wrote if before, i'm taking biotin, keratin, no more iron, my levels are ok, i'm suing biotin shampoo and himalaya shampoo, i know this is helping but i can recognize that the course of the TE will take it time :)

Guys be positive please!! you are not alone!

 

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Hi girls! How many mg accutane did you take? Asking because I'm considering accutane but now I'm a little scared after what I've read about hairloss side effect. I'm wondering whether hairloss is dosage related. If I go with only 10 mg a day, is hair shedding likely to happen? 

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Hi everyone - I thought I'd check back in to this blog as I haven't posted for a while. I'm so sorry to hear that you are all still going through this nightmare :(

i did notice that some people were asking for good news...i took roaccutane from Feb - June 2016 and experienced the most awful TE starting in September 2016 for many many months. it was such a terrible experience and I could think about very little else while it was going on. It felt like it would never ever end and I couldn't understand how I had any hair left at all at the rate it was falling out!!

anyway as I posted earlier in the blog it did eventually stop, really suddenly and really unexpectedly. I really don't know why. But I'm really pleased to say that  haven't experienced TE again since then!  I can now actually prove to people how much fell out as I have little patches of short hair all over my head (especially in the front!!) where it has grown back in. It is definitely drier than it was and has gone quite a lot darker, so  am still living out some effects, but I just wanted to say hang in there as I know how desperate it can be, but i do think in most cases it will eventually stop. Sending hugs and will keep my fingers crossed for all of you that the nightmare ends soon!!

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On 9/3/2017 at 10:35 PM, fraise23 said:

Hi girls! How many mg accutane did you take? Asking because I'm considering accutane but now I'm a little scared after what I've read about hairloss side effect. I'm wondering whether hairloss is dosage related. If I go with only 10 mg a day, is hair shedding likely to happen? 


Unfortunately I've been taking 10mg for 2 months and I've had shedding since the end of month 1 and it's still going strong. I don't want to stop the drug because I NEED it to work for my skin (my skin makes me suicidal) but I am so scared about what it's going to do to my hair. My hair is super long and really thick but so much is falling out every time I wash it now. I'm scared I'm going to go bald and have my appearance anxiety and obsession just transfer onto another problem. Having had acne for 12 years, my lovely long hair is about the only thing I've ever actually liked about my appearance and now I seem to be losing that as well.  :smileys_n_people_51:
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12 hours ago, MoonlitRiver said:

Unfortunately I've been taking 10mg for 2 months and I've had shedding since the end of month 1 and it's still going strong. I don't want to stop the drug because I NEED it to work for my skin (my skin makes me suicidal) but I am so scared about what it's going to do to my hair. My hair is super long and really thick but so much is falling out every time I wash it now. I'm scared I'm going to go bald and have my appearance anxiety and obsession just transfer onto another problem. Having had acne for 12 years, my lovely long hair is about the only thing I've ever actually liked about my appearance and now I seem to be losing that as well.  :smileys_n_people_51:

I'm really sorry to hear that. Hope it becomes better in no time!
I have also come across forums where people took Roaccutane in small doses and their pre-existing hair shedding stopped surprisingly. https://www.hairlosstalk.com/interact/threads/you-who-benefited-from-accutane.45731/ 
It's weird how it can cause opposite effects in different people.
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Day 18 of minoxidil (rogaine 5% foam). Horrendous, horrendous initial shed. I'm losing 500 hairs a day. I'm certain I'll be in a wig by Xmas, but also realise that this isn't improving on its own, so I need to try Rogaine.

 I have had awful side effects from it too. Constant headaches, dizziness, intense fatigue and an itchy scalp. The headaches seem to have started to lessen, but it seems to be making me so tired that I can hardly function. I hope I can continue to use it and that it doesn't get in the way of university once I return. 

Oh, and another lovely side effect: my face is swollen from it. I wake up looking bloated, especially under the eyes, which appear to be full of water. They're so, so puffy.  Edited by chicanery
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hello everyone!! thanks for the feedback!  i'm still have shedding but i guess is less than before, right now i believe is around 200 per day. I took isotretinoin for 3 month, 20 mg (second time, the first time was also 3 month, no telogen effluvium for that time), right now i have 8 month with telogen effluvium.

Actual treatment:
1. Biotin Shampoo, plus Himalaya shampoo
2. Keratin Booster (it has biotin 6,000 mg plus keratin)
3. Vitamin C
4. Patient, a lot of patient

 

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Hi everyone! Thought I would provide an update as it has been awhile. I'm nearing the year mark of being off isotretinoin. I originally took 40mg for only a month before I started shedding excessively. My current shedding hasn't slowed down. I do, however, think I'm beginning to see some real regrowth around my hairline! My hair is starting to feel more "normal" as well, so we will see what happens. Honestly, I think it might just take time. I'm no longer taking any vitamins, and I have been using Loreal Ever strong Thickening shampoo & conditioner since this started.  I'm happy to see some positive updates on the thread. @chicanery hang in there! Keep us posted on the Rogaine progress.  

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So glad to hear that meritnorth! I'm shedding so, so heavily with the minoxidil. I've been using it for around a month, so this is typical I believe. I'm losing 400+ hairs a day, but I just have to have faith in the process. The side effects have stopped, thank god - I don't even seem to get a puffy face now, and no headaches. they were so, so severe when I first started using Rogaine, and I had them every single day. 

Luckily I am back at university and am very distracted, so don't have time to stress and cry about my hair. I will do a real assessment of whether the Rogaine is working over Xmas when I'm back home. I really am praying that this initial shed stops soon and that I get some regrowth.

My hair is so, so thin. I still cannot BELIEVE that accutane gave me this side effect. I have about 30% of what I had before.. properly thin hair. 

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Hi guys,

Glad everyone is still staying active on this forum! The updates keep me positive and hopeful! My shedding decreased subtantially throughout most of September, but recently I've had a couple heavy shed days...I'm trying not to let it get me down..I'm finally seeing what looks to be a little bit of new growth, but I'm not sure how long it will stick around...I wanted to share some pics so you'd know what I was working with. Let me know if the hair loss pattern looks like any of yours. Current supplements:

Phytomulti (multivitamin)
B complex
Fish oils
Zinc
Vitamin D
Collagen
L Glutamine (for gut health)
Probiotic

Can anyone share their iron dose with me? I'm always worried about taking too much...thanks, guys! XO!! :) IMG_5956.JPG(dry hair...10 months after start of shed)IMG_5955.JPG(wet hair)

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Hello Undone515!! i saw your pictures, It's like what I'm going through right now! about the supplements, i was basically taking the same, but now i'm taking only Pantogar for one week. I'm still shedding but i don't try to stress myself to much :) 

i forgot about your question:

Ferrous Sulfate 325 mg per day for one month, my levels are ok

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Thank you, Karly123! I will have to look into the ferrous sulfate; I've heard good things! I'm currently doing 30mg of a chewable iron, but my ferritin levels aren't really budging. Stress has definitely been a huge factor in all of this, so I'm trying to let things take their course and not obsess over my hair constantly. How are things going with the minoxidil, Chicanery? Everything I've read says the initial shed is definitely normal, so  I hope it stops soon for you! :) 

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been using minoxidil for 6 weeks, still shedding TERRIBLY. My hair is so thin I cannot tie it up in a ponytail, and I have to wash it daily when it used to be thick enough to not get greasy for 3-4 days. Gonna reassess whether the minoxidil is working at Xmas and stay distracted up till then. 

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Hi Guys,

I just wanted to share my story as its very similar to all of the above. I took accutane for 6 weeks and stopped it a week after i noticed my hair was coming out in clumps. That was almost 10 months ago (Jan 2017) and it has still not stopped shedding. It has thinned by about 50% maybe 60%. I also had thick black hair. Now you can see my scalp at the crown area when the sun shines at certain angles. It is DEVASTATING. I literally can not stop thinking about my hair loss and i literally stare at other peoples hair now. Some days are better than others and I accept my hair won't be the same again, but I just NEED it to stop falling out. I really don't know how I am not bald by now. The days i shower i loose about 300 hairs, then about 150 the following days. Its so nice to have found this thread where we are all pretty much in the same time frame of when our hair loss started. Hopefully the dreaded TE will come to an end for us soon :) Oh i also forgot to say that i have seborrheic dermatitis on my scalp which means rogaine is not an option for me...otherwise i would definitely be trying that!  I have tried all the supplements...none have made any real difference :( 

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Hello flowerpower123, thanks for sharing. I'm understand you, still shedding, my last accutane was on January 2017. Please be patient, i know this will end soon :) are you taking some supplements? 

how are you everyone? 

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Thank you Karly123! Yes I am taking supplements since it started happening...took nourkin for 6months and then took florisene for 2 months. Then I stopped as I felt they were not helping. Now just trying to eat well and let it pass! The worse though is the dry scalp...don’t know what to do for that! :( 

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Hello girls. I also started shedding hair like crazy after accutane. Since im a guy its not as much of a problem though. My other long term side effects were daily nausea for 6 years and chronic fatigue and my skin and lips stayed dry, even now 10 years later.

This group of doctors is raising 100.000 dollars as a prize for someone who finds the reason for the long term side effects of Accutane, Finasteride and SSRIs. Do your own research, don't just send money. https://rxisk.org/prize/
rxisk.org also has a section where you can report your side effects.

If you see other women on this forum asking for advice about accutane, please tell them not to take it and encourage alternative therapies like a ketogenic diet or laser therapy:

From the abstract: "Acne is absent in populations consuming Palaeolithic diets with low glycaemic load and no consumption of milk or dairy products."

https://www.ncbi.nlm.nih.gov/pubmed/22419445

Google excimer laser therapy for acne, it shows very promising results.

If you read this post and are currently on accutane, consider slowly tapering down the dosage and stop the treatment. 

Maybe you can tell this young woman what you are dealing with: https://www.acne.org/messageboard/topic/372360-starting-acctuane/#comment-3574251

 

Edited by draci
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Approaching 8 weeks on minoxidil. I think I see some new little regrowth hairs that look about 1cm short (so probably from the rogaine) but my shedding is so, so much worse than before. I am losing HANDFULS of hair. 14 months off this poison of a drug. 

Again, I'm trying to have faith in the process and plan on using minoxidil regardless of this increased shedding. I mean, any hair specialist I go to in the future will put me ON rogaine anyway as a trial, right? so it would be stupid for me to just stop using it.

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No real update from me. :( I've passed the year mark of being off the drug. I am definitely seeing some small regrowth around my hair line and my hair is feeling healthier.  Still shedding handfuls of hair and no signs of slowing down. 

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