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

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Oenone123
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Joined: Thu Apr 05, 2018 12:37 pm
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by Oenone123 on Thu Apr 05, 2018 12:42 pm

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

I'm hoping to start toctino/alitretinoin soon for severe pompholyx on hands and feet, I'm female 53yrs. If anyone wants to chat about it please reply.

audrey_pem
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Joined: Sat Feb 28, 2015 10:30 pm
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by audrey_pem on Sun Apr 15, 2018 11:47 pm

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

Hi,

I am a 50 year old female in Canada. I have been suffering from dyshidrotic eczema on my hands for over 5 years. I was three or so years in before I finally tried Toctino, the price is hard to get over. I did 6 months the first time and the results were amazing. I would get the flushing and headache a few hours after taking it so I would take it at supper time and a little advil before bed does the trick.

I was good for almost a year, I still had little flare ups and I have never given up wearing the gloves for doing anything involving water. Then I started to have a lot more flares, so I went back on. I didn't find it as helpful as the first time but then again my hands weren't as severe. After about 4 months my cholesterol had doubled so I went off of it.

I was between dermatologists as mine had retired so I recently finally got into a new one and she suggested taking the 10 mg instead and seeing if we can get it to a maintenance level. Apparently you don't have to go off of it if you don't have any side effects. So here I am tonight staring at the box feeling a little unsure of trying it again. It does work but my cholesterol is back to normal now and I have a heart condition so I always worry about that. Oh and no doubt stress makes the eczema much worse.

Bottom line is if you are thinking of taking it and can afford it, Toctino can be a life saver. It took me from not being able to hold a pen or my keys to having normal looking and feeling hands.

Best of luck, feel free to ask me anything .
Wendy

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Marcie Mom
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by Marcie Mom on Mon Apr 16, 2018 4:34 am

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

Thanks for sharing Wendy, and it is great to hear that you are doing well!
Mei
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Oenone123
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by Oenone123 on Wed Apr 18, 2018 11:11 am

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

Thanks Wendy for replying, on day 5 of toctino but getting an itchy rash and only been on 20mg daily, hoping that it will improve so carrying on. How are you doing?

Noni.

Dawna044
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Joined: Thu Nov 19, 2020 7:56 am
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by Dawna044 on Thu Nov 19, 2020 8:22 am

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

Hello I'm a 56 yr old Canadian woman with severe eczema on my feet. My heels are especially frightening as I have fissures and deep blisters and they are crazy itchy. Now its spreading towards my toes and up the sides! Last year it was horrendous on my hands but the clobestsol and eurchrisa and blexin seemed to clear it up but now my feet are so painful. So hard to walk at times, I wrap them in plastic wrap to help the medication work longer. I'm so unhappy after a scratch fest as now I know have to deal with even more cracks, but hey, I got relief for 30 seconds. Funny, not funny.
Anyhow I finally just got approved for Toctino 30mg. ...hours on hold, and a 4 page drug approval for Manulife and I had to apply to the Toctino assistant program (they pay $75 per month). The drug is being delivered tomorrow. I am despite for relief. It is wonderful to find this posting to give me hope. I will post again soon.
Thank you everyone.

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Marcie Mom
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by Marcie Mom on Wed Nov 25, 2020 6:40 am

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

Hope you get better soon! And instead of plastic wrap, may want to consider wrap like Tubifast (and there're other brands as well) to just keep the moisture in longer and can be washed :) Take care!
Mei
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Mei - Founder of http://www.EczemaBlues.com and Mom to Marcie
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MissCandyGirl
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by MissCandyGirl on Fri Nov 27, 2020 10:58 am

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

I agree with Marcie Mom.

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