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

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hipwell_uk
Posts: 1
Joined: Wed Jul 10, 2013 5:29 pm
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by hipwell_uk on Wed Jul 10, 2013 5:47 pm

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

Hi,
I've been on Toctino for five years now. After many variations, what works best for me is taking the 30mg version for alternate 30 day periods (30 days on, 30 days off). I get a severe headache 4 hours after taking the drug. Paracetamol eventually sorts this out over 12 hours. After three days the headaches disappear completely. Drinking a lot of water at the time of taking the drug does seem to reduce the severity of the headache. I also get facial flushes six hours after taking the drug, again this lasts for three days. I have frequent blood tests to check for side effects, and all are within normal parameters.

It has absolutely changed my life ... the finger-tip eczema came on overnight out of the blue, and rendered me pretty much disabled and in constant pain. Over time, the pain and the changes in your life (e.g. not being able to get yourself dressed), and the realisation that it will be there forever, also gradually pulls you into depression.

These days my condition is managed very well and I lead a normal life (albeit a lot more adventurous now I no longer take my health for granted!). I'll always wonder what caused it in the first place, and whether a permanent cure will arrive :-)

Good luck!

Bulldogbrit
Posts: 1
Joined: Fri Jul 19, 2013 7:51 am
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by Bulldogbrit on Fri Jul 19, 2013 8:12 am

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

Hi guys - so glad to hear the eczema is clearing and your lives have improved. I have a different skin condition and have tried everything but have researched and looked into toctino as a idea to help my condition. I realise Toctino is designed for eczema related issues but Im hopeful that it will also help with my problem too. Im a 38 yr old man with a hereditary history of severe hard skin on the soles of my feet, some people call it hyperkeratosis others call it something different. It gets very thick and splits into deep fissures making it very painful to walk. It also cause, over time, me to walk on tiptoes a lot of the time making my achilles strain and go solid. My dad had it really bad so that it crippled him. Now some of my brothers and me have it and its just getting worse. There is no cure its just a case of managing it the best way we can with moisturising creams, steroid creams dont seem to touch it. Also applying cream 4 times a day to the soles, heals and toes of my feet everyday is unmanageable, and work and look after my young son. Im now under the dermatologist again as they are getting worse and he has basically shrugged his shoulders and said as long as I get my cholesterol down I can try it. Its now down and Im on the verge of trying it. Although Its not ezcema my skin does get inflamed and red around the edges of the hard skin and also after I have the marathon session of blading it down. I praying that it has at least an effect as Im really at my wits end. :)

moslater
Posts: 3
Joined: Sat Apr 12, 2014 10:06 pm
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by moslater on Sat Apr 12, 2014 10:17 pm

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

It's really good hearing am not the only person that has had this. Am 29 male from uk and currently work as a chef. I've had severe dermatitis for a year now and have been supply by doctors all sorts and nothing has worked. Palms flare up, blister, crack open, are really itchy. It's to the point I can't sleep, do day to day things to the point my girlfriend has had to help me put my socks on. I've just seen a dermatologist and he prescribed me with strong steroid creams, moisturisers and potassium promanganate and it healed my hands although I had to take a week off of work. Now back at work it's slowly starting again. I had my sexing appointment with him yesterday and he put me on the 30mg of toctino and started it today so hopefully over time it will work and won't get any side effects. Such a good feeling reading about this that am not the only one.

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Marcie Mom
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by Marcie Mom on Mon Apr 14, 2014 8:03 am

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

Hi

Wondering if your rash is contact dermatitis and related to your occupation, e.g. frequent hand washing? May want to do a patch test and consider how to reduce contact with the irritant you're sensitive to.

Take care!
Mei
Mei
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Mei - Founder of http://www.EczemaBlues.com and Mom to Marcie
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conitchewa
Posts: 10
Joined: Sun Jun 03, 2012 10:44 pm
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by conitchewa on Thu Apr 17, 2014 10:08 pm

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

UPDATE - I'm so glad to see some others have stumbled across my posts and are trying the Toctino and are sharing results or in some cases, waiting for them. : )

I finished my second bout of treatment 30mgs at Christmas 2013. Once again, I immediately obtained clear hands and feet but sadly it also began to return shortly after I stopped. Not too badly but the itching started on my left palm mid January and then the fissures began, I could not believe it, I had just enjoyed 3months free and clear. I was so hopeful that it would never return.

So in desperation, I started taking Vitamin A. Derived from cod liver oil. 2 small gel pills 25,000.mg each. and I cleared up again. I figured the Toctino is a derivative of Vitamin A so what could it hurt? At first I took it with dinner every night, then once I saw results about 2wks in, I reduced that to maybe twice a week. The best part, is that it only costs $6.00 canadian for 100tablets and its working!

I also still practice a good moisturizing regime and I find its totally manageable. It's not spread to my feet or my fingers at all. My palms are a bit dry but no fissures. I plaster on the Vaseline Petroleum Jelly. It seems to be the only thing that works for me. Then I am perfect again. I am happy to report that I am going to go have my first professional mani pedi next week in 4yrs! I have so missed my spa visits.

So $5000. spent on medications in 2013. As I spent so much I am going to try to claim this on my income tax. Hopefully I will get some money back. Most of that was for the Toctino. Which I still maintain gave me my life back and how can you put a price on that?

Anyways I just want to share what is working for me.

Happy healing everyone.

hershpersh
Posts: 1
Joined: Sun Apr 20, 2014 6:36 am
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by hershpersh on Sun Apr 20, 2014 7:24 am

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

I have to say "thank you" again and again to those of you who shared experiences and knowledge here. I am so excited about the information shared and have done more research on the Balsam of Peru allergy and using Cod Liver Oil to improve Chronic Hand Excema. Thank you! I feel I have answers to so many of my questions now. I thought I was allergic to gluten, tomatoes, and dairy, but the Balsam of Peru allergy explains so many more food sensitivities I have found since completing an elimination diet in recent years. The feedback on Toctino from actual users is also so valuable to find! The immense relief to have an answer, even if only for the hope it brings, is amazing!

I have had excema all my life (36 years). I have never been without it completely and realistically never believe I will be. For me, excema is genetic, environmental/occupational, and dietary related. But, in the past year I have found more answers searching forums and medical journals than any physician has ever offered me. Becoming gluten-free, dairy-free, and low-acid greatly improved my excema, but not on my hands. I was considering oral alitretinoin and hoping that would be the answer, but after reading this thread, I feel more excited to try a combination of cod liver oil supplements and avoiding all balsam of peru containing foods and products. I want a solution that is a practical change I can commit to for life that will help minimize the flare-ups. I don't think excema is someting that can be cured. I think each person has to figure out how to reduce the triggers in their life to keep it from running their life. I hope this new information will help me do just that. So, again, thank you!

moslater
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Joined: Sat Apr 12, 2014 10:06 pm
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by moslater on Sun Apr 20, 2014 10:28 am

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

Hey guys again yes my hand problem has been down to my job but now am at a point I can control it with the medicines I have been given. I've been using toctino coming on 2 weeks now and my hands haven't got too bad yet abit of blistering but went straight away with my steroid creams. It's too early too see the toctino drug taking full affect but I know in the next few weeks it will proper start working. I've had headaches from it at work but nothing a paracetamol won't fix. Although my job is the cause to this I have to stay in it as my gf has 2 months left at college doing her business course and having 2 little girls someone needs to pay the bills. Once she is done though I think it will be time for a career change to help my hands more upwards and onwards :))))) oh and camomile tea is great for the skin too along with the vitamin a pills also gives you a brilliant sleep as it slows the brain down.

conitchewa
Posts: 10
Joined: Sun Jun 03, 2012 10:44 pm
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by conitchewa on Tue Apr 22, 2014 8:31 pm

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

Hi Moslater -

Be patient with the Toctino. I too had some headaches in the beginning too but they subsided. Hopefully yours will too. I was a little concerned that you mentioned that you take Vitamin A pills with Chamomile Tea to assist you with sleeping. I just wanted to remind you that you should not be taking Vitamin A with the Toctino at all. The tea is fine but the Toctino drug information sheet does state to not take Vitamin A while on this drug. So do be careful. : ) I hope you start seeing some results soon. Cheers.

victoriaa
Posts: 6
Joined: Thu Apr 24, 2014 9:50 am
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by victoriaa on Thu Apr 24, 2014 10:12 am

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

Hi all.,
I have suffered with chronic hand eczema for prob 3 yrs now, my Dr wasn't much help but I insisted I see a specialist , so finally he referred me, after using every cream ever created I had skin tests done and discovered I'm allergic to nickel quite bad which I kind of knew already, I changed my job because I was coming into contact with a lot of nickel based things, and had a very slight improvement . I have started getting eczema on my feet now, so my specialist prescribed me Toctino. I am starting the course today!!! My main concern is the headaches as I already suffer with quite bad cluster headaches, so hopefully I won't get that side effect, so here goes :)

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