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

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

Post Reply
97 posts
kathylee
Posts: 1
Joined: Sun Jun 01, 2014 3:11 am
Quote

by kathylee on Sun Jun 01, 2014 3:33 am

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

I'm so glad I found this site! Currently on my third round of treatment for hand ezcema and nothing has worked so far. The next course of action is Toctino and I was a bit hesitant to try it due to the cost and previous and current treatments not being successful. Having read what each if you has written, I think I would be making a great decision to try it!! This has been a seven month battle, the ezcema coming out of nowhere at 44 years old. My life has changed dramatically due to the limitations of having such a condition as you all know. Thank you for all the helpful advice!

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

by Marcie Mom on Mon Jun 02, 2014 4:29 am

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

Keep us updated kathy on how it works out, hugs.
Mei
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/

npaton345
Posts: 2
Joined: Fri Jul 04, 2014 5:16 pm
Quote

by npaton345 on Tue Jul 15, 2014 3:00 pm

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

Hi everyone, I’m new to this.
I’ve been struggling with my eczema all my life (the major flare ups every 7 or so years). Just so happen to have had a flare up this year and it's been the worst in my whole life. And I'm nearly 23 years old.

It started off on my hands and feet in March time –actually was my feet, and then hands just flared up- the Drs called it Pompholyx. By the time I had been given pretty much all the steroid creams I’ve seen at some point in my life, it had flared up all over my body (it is worth mentioning at this point and time, I feel it occurred because I had ended a 5.5 year relationship and moved home within 5 days, I strongly disagree with folk saying I’m allergic to my cat. I know I’m not!) Anyways, by the point I was referred onto the Dermatology dept at my local hospital I had been signed off work for 7/8 weeks.
I was put on steroids for a month, which initially looked like they were working. However once I had hit the 2/day mark my skin flared up. So, a weeks wait of taking one per day (recommended by my GP)…. Just so my system had some in there, and I roll on up to the dermatology dept and get told now we’re going to try Toctino. That week was the 13th one of being signed off from work and I was returning within a few days after the appointment.

So, now that I’m up to date with the back story, I’d like to share with you some of my side effects.
I've been having mental headaches. Reading this forum has helped, as I feel the dermatologist I have brushed through the side effects. I was essentially told that the side effects outweigh the bad skin. Which is true, however the headaches are almost crippling for me. I wasn’t aware how photosensitive I was until I sat outside on a lunch break for 20mins and came back to work quite red…
Even though I am on day 14 of Toctino I’ve noticed a flare up already. My hands are bad, getting better and my feet (the left one is the culprit) are slowly healing. When I was given the Toctino I was also instructed to take more steroids again. So I’ve been feeling like my skin is getting thicker, but then one night out can ruin everything and set me back by a week.
I’m still hobbling about, able to bear weight on my left heel… Not over exercising or anything… But is it me or does it make you tired?? (don’t know if it’s because I’ve been out of action for 3months)

Anyway, I would like to thank everyone for posting here. You have no idea how happy I am to know other folk are going through a similar sort of experience as me and to be able to openly discuss the side effects and things without being told “it’s because of your meds”.

puppydog
Posts: 1
Joined: Wed Jul 23, 2014 6:08 pm
Quote

by puppydog on Thu Jul 24, 2014 9:18 am

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

Morning everyone,
This is my first post. I've had eczema for 5 years. But during the past 18 months has gone to my hands. I really struggled to cope, using steroid creams and tablets, but nothing would improve the condition. I work as a school secretary and typing, filing etc was painful. My house and car was covered in ointment and slept in cotton gloves with creams every night. I was referred to Guys & St Thomas's, London, and saw a brilliant dermatologist. Immediately Toctino / Alitretinoin was mentioned. Within 4 days I could see an improvement. I am now on my 2nd months course. Of course, somedays I do get flare ups and I think oh no !!! But it's a long process. These tablets have been a God send.

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

by Marcie Mom on Fri Jul 25, 2014 8:33 am

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

Thanks for the share! Good to hear your skin improved and keep us updated on your progress!
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/

Ouchithurts
Posts: 1
Joined: Tue Aug 19, 2014 7:12 pm
Quote

by Ouchithurts on Tue Aug 19, 2014 7:21 pm

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

I'm so pleased I found your posts.
I'm 55 and although I have always had dry skin not eczema. I have had awful hand eczema/Psoriasis since last November. I have had probs with my scalp & down below and I have been taking Toctino since Saturday and had nasty headaches through the night they do seem to be improving as the week goes on. My hands seem to be getting worse as the week goes on so I am persevering with the hope they will improve. Your posts have given me real hope I will let you no how I get on. :)

victoriaa
Posts: 6
Joined: Thu Apr 24, 2014 9:50 am
Quote

by victoriaa on Sun Aug 31, 2014 12:27 am

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

Hi everyone,
I took toctino for 3 months and my hands really cleared up, headaches cleared after a week or two, once my course ran out my hands have flared up again. Going back to hospital Monday to see if I can have another course.
Interestingly my friends wife had hands like me and she had to go on HRT and her hands have cleared up completely, Dr said its hormones that causes the hand thing!!!! I'll be asking the question on Monday, I'll let u know x

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

by Marcie Mom on Mon Sep 01, 2014 3:27 am

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

Thanks for the share, keep us updated!
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/

Achilles
Posts: 6
Joined: Tue May 07, 2013 7:03 pm
Quote

by Achilles on Sun Sep 07, 2014 3:26 pm

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

I am now two months into my third Toctino treatment.

The treatments have worked very well each time, albeit a bit slower each time. My hands usually clear up in one to two weeks, and my feet in one month (although the dead skin takes longer to wear off).

After my first round of treatment for six months, the hand and foot eczema started to come back after three or four weeks, but not as bad and I essentially got close to five additional months of not too bad peeling/itching rather than painful cuts and fissures. After about five months off the drug, though, my feet got the cracks that are very painful to walk on and I had to go back on Toctino. It worked again, but I had to stop my six month treatment after four months because my cholesterol was getting high. The first time I was on the drug, this did not happen. I then had a good seven months of manageable skin--the eczema came back on my hands in a month, but quite mildly, and my feet stayed clear for seven months, which was wonderful. After seven months though, my feet cracked and were painful to walk on so I started a third treatment.

My third treatment is going good--after a month my hands looked beautiful, and after two months my feet are painless and 98% clear (just the dead skin to come off on the heals).

My only noticeable side affect has been a headache about three hours after taking the drug, but only only the first one or two days that I take the drug, and perhaps some slight congestion. The first time and third times I took the drug this headache was fairly strong, the second time I barely noticed it. I'm not sure, but the drug may also flatten my emotions a bit while I am taking it. After one or two days the headache goes away for me and I hardly notice I am taking the drug.

I'm planning on staying on the drug for four months again and then hoping for another seven or more clear months. Maybe even my feet will become mild and manageable like my hands have. If I didn't have eczema on my feet as well, I wouldn't need the Toctino any longer.

One thing I'm changing for the future, is going back on the drug quicker. I have hoped in the past to avoid the high costs and potential side effects and stay off the drug with the eczema becoming manageable, so I have let the eczema come back rather strongly before starting Toctino again. Then it takes quite a while for the feet to clear up (one month) and that is painful. I am now going to start the drug sooner to avoid this unnecessary pain in the feet.

I wish everyone with this condition the best!

Post Reply
97 posts