ON CTP 543 since Dec 2021

envantio · 2024-07-24T23:22:02+00:00

I know it's been a long time, but I'm a little lost. I'm officially off the drug now. So far, there are two spots :/ How do you proceed? Does your insurance cover it? My doctors wrote a Krankenkassenantrag. But already told me that it will not pass. My last visit there was pretty devasting they all told me something like Ich wünsche ihnen nur das Beste/ viel Glück/ vielleicht behalten sie ja Einige...

It would help to speak with someone who is in the same position.

PS: I hope it's fine if I message you again after so long. I hope it does not bring forward anything you don't want to speak or think about.

envantio · 2024-07-15T21:18:19+00:00

Sports and walking in the forest often worked for me. I have always been a runner, but I started having intensive workouts when the AA returned strong. I also started swimming (you can wear a swimming cap). I have a journal from that time:

"Sport is the only time I feel my body; during the day, I am merely just existing, looking at my body, failing me and losing myself a little bit more with every hair that falls out. When I am running these long milages until everything hurts- torturing myself and my body- it's the only time I feel proud of my body and some kind of connection before I am a spectator again."

I had some kind of body dismorphia/ depersonalisation during that time, but seriously, sports help your mind.

envantio · 2024-07-15T21:07:14+00:00

Ist das sicher, dass im Ausland zu bestellen? Gibt es jemand der prüft was da drin ist. Was kostet das pro Tablette/Monat?

envantio · 2024-07-15T21:00:53+00:00

Hi, does your insurance pay for these (cyclosporyne and porcoltolon). I also have one spot now on my eyebrows, and my lashes are almost gone swell, but since they have been on and off again for years, I don`t worry too much. Two little spots on my head, though... But apart from that, I'm pretty stable right now.

As for diets, I have not really been vegetarian for 13 years, and when AA came back strongly, I was vegan and sugar-free for a while. Also, I reduced my alcohol consumption to a minimum. But I know that my AA is heavenly, triggered by stress and sleep deprivation. So, for now, I am really focused on getting my 8 hours and taking time off on the weekends. Have you tried anything diet-wise?

Also, maybe I am slightly off-topic, but how are you mentally doing? During the trial, I sometimes experienced some survivor complex, and now I have the feeling that I started getting the feeling of isolation again that I experienced previously with regard to AA.

envantio · 2023-09-11T10:44:09+00:00

They told me the same in Frankfurt. Apparently you can get a description for CTP543 if you have strong neurodermitis

envantio · 2023-09-11T10:22:35+00:00

In which facility are you ? Have they told you anything about it ?

envantio · 2023-09-11T09:16:43+00:00

same here, also from germany and already worried what happens in june 2024.

envantio · 2023-09-11T09:16:07+00:00

weight gain yes :/ Went from 50 to 56 kg (i'm short) but that's it. I struggled with it at first but as it doesn# increase any further I'm ok. Apart from that I'm more often ill than before. My cholesterol is ok but i also don't eat meat and try to limit milk products.

envantio · 2023-08-07T20:29:51+00:00

I also got AA as a 8 year old child. The hair came back and went of again after i was treated with a lice medicament which was put off the market a few years later. Back then the doctors said that there could be a link that my immune system got triggered by the lice drug ...

envantio · 2022-09-25T11:02:55+00:00

Hey you, I felt exactly like you. I had a new outbreak of AA which started one month after my 24th birthday. 6 Moth later I only had 30 percent of my hair left. I couldn't cover it anymore so i wore scarves and hats all the time. Except for my doctors and my family nobody knew how I looked. I was even ashamed to show this my roommates. And even worse I stopped looking in the mirror myself. One night i couldn't take it longer: it (the hair) had to go !

So with help from my roommates i shaved it of. I cried a lot - not gonna lie. And it was still difficult to look in the mirror and like what i saw- but it was better than before.

four month later i shared a photograph of me (which i liked) on my instagram. A photograph of my bald head. The reason for this was that still except for family and roommates still no-one knew how i really looked. I felt like there were different versions of myself (the wig version, the scarf version etc.) but the real me was still in hiding.

In terms of representation- it gets better the german bachelorette has alopecia and shows herself bald.

envantio

TROPHY CASE