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

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conitchewa
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Joined: Sun Jun 03, 2012 10:44 pm
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by conitchewa on Sun Jun 03, 2012 10:55 pm

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



Hi - I am a 47yr old canadian female - i work in an office - push alot of paper all day...i have developed chronic hand eczema and have been suffering with it the past 2 yrs. its made my life unbearable and it does not respond to regular treatment. I have done everything - organic and non organic. I discovered the new drug Toctino from research on the internet and told my dr about it. he finally prescribed it to me last week. I had to have the routine pregnancy test first and have a standing order to do this monthly while taking the treatment. i have not picked it up yet as its kind of expensive, about $740. canadian a month. of course my benefits subscriber does not cover it so i have just applied for special authorization. i am hoping they will cover some of it. i will take it regardless. my main concern with summer coming is the effects of being exposed to sunshine. which i love and we have a lakehouse so i enjoy getting alot of it, weather permitting. so wishing i got this prescription before summer was to begin! Treatment is supposed to be 12-24wks.....

anyways, has anyone taken it? I would love to hear your input. Did it work? experience any side effects? how long did it take to see a difference? thank you!

conitchewa
Posts: 10
Joined: Sun Jun 03, 2012 10:44 pm
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by conitchewa on Wed Nov 21, 2012 10:42 pm

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

So almost 6months and sadly no one has replied. So I will reply so maybe someone who is suffering can learn something that I was unable to find out.

I have read posts on this site and it makes me wonder if some of the people that respond here actually suffer from this condition at all? Because if they did they would realize how useless their advice was. Let me tell you I have tried almost everything available and nothing works. I have been tested for practically everything and nothing has been found wrong with me. Yet I am afflicted.

Because of the cost of this treatment...(the actual cost was $772.35 for a 30day supply and is necessary for 12-24wks) It took me awhile to begin it. Meanwhile my condition had only worsened. What started on the palms of my hands had now spread up onto the inside of my wrists and onto my feet covering everything from the ankles down. I thought I had difficulties before, now I could barely function. Sleeping was impossible too, the itchiness seemed worse in the evenings so all I do is scratch. Most nites I would take a powerful antihistamine to knock me out, it does nothing for the itching but it does help me get to sleep at least. So out of desperation, I finally decided to suck up the cost and order the expensive stuff. I have been taking 30mg of Toctino for 29days now. My only regret is that I didnt start taking this medication sooner.

My hands and wrist are 99% healed. They are pink and soft again. I can actually take my rings off and on. Its amazing. It took about a week to see that my skin was changing. After only 2wks my hands and wrists were 90% healed. They were a huge mess too, very inflamed with deep fissures that would painfully crack open and bleed on everything if I tried to do anything at all. I mean I could not dress myself anymore and at work I could no longer hold a pen to even sign my name and I was having to resort to using my teeth to grab files! Driving was only possible with nitirile gloves. It was all very depressing to be unable to perform normal everyday tasks.

The only area left that is still affected by eczema are the soles of my feet. They are improving and I am hopeful that by the end of the 12wk treatment I will be 100% Eczema free. The second 12-wk course of treatment is only to be taken if a relapse occurs which is possible after 4-6months after stopping. Then you start treatment again and it should solve everything permanently.

So I am happy to reporst that I have my life back for the first time in 2yrs. Toctino works and I have had no side effects whatsoever. I hope this information helps someone else too.

Jimbob
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Joined: Thu May 08, 2008 9:00 pm
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by Jimbob on Fri Nov 23, 2012 7:32 pm

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

I am so glad this treatment has worked for you. I do not suffer with eczema but have watched my son suffer with severe atopic eczema since he was 6 weeks old and is now 8 years old. It is a horrible condition and I really don't think that most people realize just how bad it can be. It really does have a dramatic impact on life physically and emotionally and I wish more people understood this. Once again I am so glad that it is working so well for you and really hope you continue to benefit from it.

Kelly

ryder666uk
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Joined: Wed Nov 28, 2012 2:31 pm
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by ryder666uk on Wed Nov 28, 2012 2:38 pm

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

Toctino changed my life. I suffered with hand eczema for 18 -months and then foot eczema started - it was not only painful to do anything with my hand it was also painful to walk. I became depressed for long period sduring flare-ups. I had limited success to creams and treatments. Started my first course of Toctino in Feb 2012 for three months and it has cleared up my hand eczema and improved but not eliminated my foot eczema. I have just started my second (2-month) course of Toctino and so hopefully that will clear my feet up finally.

My hands seem to be in complete remission.

conitchewa
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Joined: Sun Jun 03, 2012 10:44 pm
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by conitchewa on Wed Dec 05, 2012 8:59 pm

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

Hi Ryder 66uk-

Thanks for your reply!

I agree - Toctino changed my life too. Your situation sounds similar to mine. It occured out of no where and over a 2yr period it got progressively worse - first my hands and then recently my feet. My hands did not respond to the usual treatments. I would start to see some change but then it seemed I would become immune and it would only worsen. So I would try something new and the same thing would happen. I can't say I had "flare ups" though...i pretty much had deep itchy fissures the entire time. I didnt even bother trying any treatments on my feet - this just started Mid August so it forced me to start the Toctino treatment.

I had no idea how depressed I was until I began the Toctino treatment and started to see improvement and get my life back again. Its amazing how much my attitude has improved. I am smiling all the time now because I am so happy and I am not "handicapped" or prevented from doing anything I want or need to do. This makes everyone around me happier too. My husband does not have to watch me melt down all the time. It was to the point he was having to dress me because I couldnt do it myself without pain or bleeding all over my clothes. My house is nice and clean again now that I can pick up the mop and the vacuum cleaner. lol. I can't wait to get into my kitchen and create things once again like I have always enojoyed doing. I don't have to wear the protective gloves anymore to do everything but out of habit I will put them on when I need to handle some messy foods, like butchering meat or cutting onions or garlic. But I put them on because I want to not because I need to. My colleagues at work, they are way happier too as they no longer have to assist me to do some of the more mundane tasks I was incapable of doing for myself in the office. It so good to be myself again!

So my hands are perfect after 45days of treatment now. I have not had any side effects from the medication at all. I did have one tiny "flare up" on one palm at the 30day mark but that went away within 48hrs.

Like you I am not seeing the same results on my feet. They are all fissured and I am limping around still. I don't find the foot ezcema to be as life changing as the Chronic Hand Ezcema was but I still want to get rid of it. *I am interested to know how you make out with your second course of treatment. I sure hope your feet go into complete remission too! I am only half way thru the first 3month Toctino treatment. So there is hope for my feet yet. If it doesnt happen I will take some time off the Toctino and start the second course of treatment too. Good Health & Happiness to you! :D

conitchewa
Posts: 10
Joined: Sun Jun 03, 2012 10:44 pm
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by conitchewa on Wed Jan 09, 2013 10:51 pm

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

Happy New Year!

UPDATE...I am just a week into my third and hopefully final month of Toctino treatment...30mg. No side effects still. My hands are still perfect and the soles of my feet are now completely healed as well. At Christmas I began to see the change to the soles of my feet at last. My husband and I jokingly called it our "Christmas Miracle." Its absolutely amazing though the difference. I am thrilled to be back to normal at last. Yay. :D

megana feet
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Joined: Sat Feb 23, 2013 8:42 pm
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by megana feet on Sat Feb 23, 2013 9:06 pm

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

Hi there Conitchiwa

I am also on Toctino. I am a 48 year old English woman, with startling eczema/psoriasis (every specialist says something different) on the soles of my Feet!!!
Agony, many days I cannot work...even walking around the house is awful . Blisters, cracks, fissures. Strangely, my hands have been spared. I have not responded to any steroids except years ago. Then it came back about 6 yers ago , got progressively worse, with rock bottom reached last year.
I read about Toctino and found a specialist who would give it to me on the NHS (even though here in UK its only for "hand" eczema).
My specialist said take 1 every 3 days (although this is less than standard dose) as I am smallish...but after 3 months, it is not doing anything :(
BUT I have renewed hope after reading your posts; maybe when i go back they will put me on a higher dose. I did get headaches, feel a bit strange etc even on the one-every 3 days dose, but will put up with that IF and when it starts to actually work!
here's hoping :)

conitchewa
Posts: 10
Joined: Sun Jun 03, 2012 10:44 pm
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by conitchewa on Wed Mar 06, 2013 10:07 pm

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

UPDATE - Well I have been off the Toctino for a month now. Sadly, about 2wks after stopping treatment my palms of my hands got all itchy again and I am scratching them like crazy. My feet are now showing signs of worsening again too. No fissures to report though - or should I sayr yet...This itchy cycle seems to occur mainly in the evenings. I guess I will need to start the second course of treatment. I am so frustrated - I simply can't afford the medication but I suppose I can't afford not to. Strangely when I was on the medication I felt terrific. Once I went off I became pretty sick. Not sure if this is a coincidence or what. There has been a wicked flu going around this season.

Meganga feet - i feel for ya sweetie...any improvement yet?

evzone22
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Joined: Mon Mar 11, 2013 8:17 pm
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by evzone22 on Mon Mar 11, 2013 8:40 pm

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

Hello Conitchewa, I hope the second treatment will work for you.
I am on Toctino as well. Started it in December. After 5 days my hands and feet improved greatly and now they are 100% clear. I think this medication is a miracle. I've been fighting hand and feet dermatitis for about 5 years, tried everything topical but got no improvement at all. Finally my dermatologist No. 7 ( I jokingly number them now, can't remember all the names) who is from Toronto Western Dermatology clinic put me on Toctino 30mg. He took a lot of my blood for testing prior to this. All seems fine, I have no side effects at all and all subsequent blood tests are good, too.
Now, since my hands and feet are clear, he asked me to taper off the treatment, initially to 1 pill every other day and now 1 pill twice a week. I still have about 20 pills left what looks like another 10 weeks of treatment. Then I am supposed to stop and hope I don't relapse. So far, all is good.
Keep me updated please as to your progress.

Achilles
Posts: 6
Joined: Tue May 07, 2013 7:03 pm
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by Achilles on Tue May 07, 2013 7:35 pm

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

Hello,

I've been trying to find people who have been on Toctino to talk to! I was so happy to see your post.

I too came down with chronic hand eczema at the age of 47. It first appeared the mornings after playing hockey--an itch on my palms and fingers. It happened right after buying new leather hockey gloves; much later I learned that leather treatments might cause skin problems, but I don't think that was it. Slowly it spread to my fingers and fingertips--I would get the cycle that results in inflammation, itchiness, painful fissures, and peeling skin. I went to a Nurse Pratictioner, my Doctor, and two Dermatologists. Five steroid creams and Protopic did not work. After about 14 months, the eczema surfaced on the soles of my feet; I would get thick skin and painful cracks and tears. I couldn't use my hands to do anything without white gloves, and it was painful to walk.

My second Dermatologist put me on Toctino for six months, a dose of 35 mg a day. It immediately began to work. My fingers started getting better every day, and the pain in my feet stopped the very next day. It took about 2.5 months for the fingers to clear completely, but my feet were better right away, other than the dead skin on my feet took a month or two to peel off. There was still a little sensitivity on two fingertips, so I stayed on the drug for six months. I essentially had no side effects: maybe a little congestion and flushing two hours after I took the drug each evening.

I've now been off Toctino for three months. My eczema started to come back very slowly, a little peeling on the fingertips each day. It seems to have come back in a somewhat different form and lesser degree, however (for now anyways). My feet have stayed clear almost completely. My finger tips and sides of two fingers have a lot of peeling, but I am not getting the painful fissures. I hope it stays that way. I would say my eczema has gone from moderate/severe to mild/slightly moderate.

Because of the cost and potential side effects, I would like to avoid going on Toctino again, although it was miraculous and I will if I have too. It cost me $775/month until I found out about a company rebate program that knocked off $75/month.

I'm interested in some of the comments above that suggest that a second round of treatment might get rid of the condition for good? Did your dermatologists tell you this? Has anyone experienced this yet? Also, has anyone stayed completely clear?

I'm also interested in the comments above where Toctino worked better on the hands than the feet; my case has been the feet being completely cleared for now; maybe this is because my feet took so long to acquire the condition--over a year. I remember saying to myself I wish it was on anywhere but my hands, and then when it came to my feet I was sorry I said that. It's terrible not being able to walk.

I was allergy tested and have an allergy to Balsam of Peru, which is in many cosmetic products. I of course moved to hypoallergenic products. Balsam of Peru is also naturally in many foods such as tomato products, citrus products, vanilla, and cinnamon. So I have eliminated these foods from my diet. I'm not sure how much it helps. Does anyone else have such an allergy? Some of the reading I have done seems to suggest that an allergy to Balsam of Peru can manifest itself as eczema, especially in cases where the eczema is on the hands and feet.

In the end, I think my condition came about because of some combination of allergens, contact irritants, and genetics. It is frustrating not to be able to pin it down more than that. Before I had the condition, I was using a lot of sun screen, bug spray, and air fresheners--so they could have played a role too.

All the best.

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