Toctino - anyone tried it? I would like to hear from you!

Moderators: talkhealth, Marcie Mom, AnnaB, StephanieJae, Koh Ming Shao

Post Reply
97 posts
oxyjen45
Posts: 2
Joined: Mon Jan 16, 2017 7:18 am
Quote

by oxyjen45 on Mon Jan 16, 2017 8:02 am

Re: Toctino - anyone tried it? I would like to hear from yo

Hello everyone! Just read through all these interesting stories. Just started Toctino 30 mg today. I have so many emotions.....feeling excited, hopeful, scared and nervous! I took my first pill with lunch today. By 4pm started with a headache. Took Advil at 6pm. By 8pm had facial flushing and my face was quite warm. It didn't last long though. Headache came back a little later and I took more Advil. Haven't really felt well all evening. I have been reading so much about all these stupid side effects that now I feel like I'm waiting for something to happen! Anyway if this is as bad as it gets I can handle it. I am praying for a miracle as nothing else has helped me. I have suffered with Eczema for probably 12 yrs. The last 4 yrs with pretty severe on hands and the last year on my feet. I can't afford to give up my career. I was off work for 7 wks in the end of 2015. Since then it's been difficult being back to work and I am only part time. Had to eliminate lots of products I was using. Lots of trial and error to find out what products work best for me. Summer is hell for me as I can't hide my hands in warm weather. Lots of rude comments and questions about my hands. Winter is my savior! Lots of long sleeves that cover my hands....no one ever seems to notice.
Anyway, just want to give as much info here as I can for anyone else out there who is considering the drug. I hope to keep posting here as the weeks pass. I live in a small community in Ontario. My pharmacist had never even heard of Toctino and had to order it in for me. She had to read up on it as well. So it seems I am the only one in my town taking it. $760 was the cost. My husbands benefits cover %80 up to $3000 per yr. So I am very lucky and can get 6 months of Toctino this yr if I need it. My dermatologist also had a $75 coupon that you can activate and use for each script you get. Every bit helps! I know the drug is not possible for everyone because of it's cost. My suggestion to those of you who can't afford it would be to see an allergist. See what you are allergic to and eliminate everything you can. Use organic or all natural products or ones that have very few ingredients. Especially your shampoo and soap. I always wear cotton gloves inside of synthetic medical gloves when cleaning or doing dishes.
Also, I have put dust mite covers on my pillows and mattress. Wash sheets often in hypoallergenic (free) detergent. All of these things have helped me some. My flares are less often. Eczema is always present and still can be agony at times. If anyone would like to know products I use, feel free to ask!
Hope people keep posting here about their Eczema and of course Toctino. We are all warriors here and knowledge is power! :D Take care everyone.

oxyjen45
Posts: 2
Joined: Mon Jan 16, 2017 7:18 am
Quote

by oxyjen45 on Mon Jan 30, 2017 8:34 am

Re: Toctino - anyone tried it? I would like to hear from yo

So, it's day 15. First 12 days were rough. Lots of bad headaches and facial flushing. Feeling very tired and nauseous at times. Wasn't sure I was going to be able to get through it but for the past 3 days no real symptoms and my hands have been clearing nicely. Nice new pink skin coming through but still quite itchy. I go back to the Derm in 8 days for my next round of bloodwork. Keep you all posted! :)

User avatar
Marcie Mom
Posts: 857
Joined: Tue Apr 17, 2012 3:30 pm
Location: Singapore
Quote

by Marcie Mom on Mon Jan 30, 2017 9:19 am

Re: Toctino - anyone tried it? I would like to hear from yo

Thanks Jen, take care!
Mei
Forum Moderator
talkhealth moderation team


Mei - Founder of http://www.EczemaBlues.com and Mom to Marcie
Visit Mei on her talkhealth blog all about eczema http://www.talkhealthpartnership.com/blog/author/mei_m/

Flippenfedup
Posts: 2
Joined: Wed Feb 22, 2017 4:24 pm
Quote

by Flippenfedup on Wed Mar 29, 2017 2:57 pm

Re: Toctino - anyone tried it? I would like to hear from yo

POMPHOLYX AKA POMP HOLY SH*T
Conitchiwa how are you? you started a great conversation here lots of essential info.Thank you.
I'm contemplating Toctino as my eczema keeps recurring, luckily here in the UK it's on prescription my hands are healed ok but feet are horrendous ,any side affects appear to be well worth it.
I have to wait until May when I see my Dermatologist
This damn affliction is driving me insane... I want my life back!
ATB J.A.

miriam123
Posts: 1
Joined: Fri Jun 02, 2017 10:01 pm
Quote

by miriam123 on Fri Jun 02, 2017 10:16 pm

Re: Toctino - anyone tried it? I would like to hear from yo

Hi everyone, I saw my dermatologist today and got Toctino 30 mg to treat my hand eczema. I don't want to describe my symptoms, they are very similar to those already described on this forum. Headache! It started about 6 hours after taking the first dose, it is bearable so far but distracting. Eyes feel dry. Hot flashes are coming on. Not great. Has anyone tried to take Toctino on alternative days to reduce the impact of side-effects? Thank you.

SaritaBasnet
Posts: 4
Joined: Mon Jun 12, 2017 6:34 am
Quote

by SaritaBasnet on Mon Jun 12, 2017 6:43 am

Re: Toctino - anyone tried it? I would like to hear from yo

Foderma serum has given me a new life. Nothing has worked on eczema on my feet and for more than 10 years I have had no sleep due to it. I have not been able to wear shoes and at the time have been off work for months due to the severity. After just one week I had such a tremendous improvement I just couldn't believe it. My skin is now return to normal after around 3 weeks of use. It truly relieves the discomfort. Stops the unbearable itching, cools the burns and makes my skin feel normal.

RitaJayne
Posts: 1
Joined: Mon Jun 12, 2017 3:51 pm
Quote

by RitaJayne on Mon Jun 12, 2017 4:48 pm

Re: Toctino - anyone tried it? I would like to hear from yo

Hi, is forderma available to buy in the uk please?

Alberta_Mum
Posts: 1
Joined: Thu Sep 28, 2017 3:40 pm
Quote

by Alberta_Mum on Thu Sep 28, 2017 3:55 pm

Re: Toctino - anyone tried it? I would like to hear from yo

Hi everyone. I'm a new participant in this forum, but have been reading your comments since I was diagnosed with severe dermatitis (eczema) over 2 years ago. I'm a 35 year old Canadian who woke up one morning to find little bumps under my nail beds, that quickly spread to the back of my hands by the afternoon, and then pussed and bled by nighttime. I thought that I had been exposed to something and suffered an allergic reaction, as it came on that suddenly!

After being prescribed numerous medications and spending hundreds of dollars on creams, I was finally prescribed Toctino by my dermatologist.

My first time I recall seeing an improvement within a couple of weeks in. I was on 30 mg for 3 months. After treatment, I was largely eczema-free for close to 9 months. Then it started to come back. Just manageable flare-ups at first, then full-borne like the first time. So back to my dermatologist I went.

Now in my second round, I'm not seeing as noticeable of an improvement and I'm 4 weeks in. For those who have been on Toctino multiple times, did your remission last longer each time after treatment? How many times have you been on Toctino? Has anyone on here been completely eczema-free since being on Toctino?

I would love to know if Toctino has been a complete "cure" for anyone here. Thanks. :)

swedenrock
Posts: 1
Joined: Mon Oct 09, 2017 6:12 pm
Quote

by swedenrock on Mon Oct 09, 2017 6:19 pm

Re: Toctino - anyone tried it? I would like to hear from yo

Hi,
I took Toctino the first time for 3 months, got nicely healed but hand eczema come back after a month.
After waiting 8 months resulting in the hands getting in a bad condition I went for another cure for 5 months, this time it took 4 months before getting any sign of the eczema. So after additional 2 months and much less eczema than last time I have now started with the 30mg pills again.

Only side effects was dry eyes the last time and in the beginning of every cure I always feels like having a severe hangover for some hours after taking the pill.

It is magical pills for me at least and government pays for everything beyond 300USD.

akshayv2
Posts: 3
Joined: Thu Nov 23, 2017 10:04 am
Quote

by akshayv2 on Wed Mar 21, 2018 7:02 am

Re: Toctino - anyone tried it? I would like to hear from yo

I've been suffering from turf toe for a while, and finally bought orthotic. This was by far the last option. Orthofeet insole helped with discomfort immediately, and easily fit into most of my shoes--I just remove the insole and replace it with this. I didn't need a set, just one, but that's not a complaint, it's a great value! I wore them yesterday to walk my dog, and they didn't slip at all. I'm wearing them today with dress shoes and even without socks they're comfortable.

Post Reply
97 posts