Tolak for actinic keratosis

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Hi everyone

I have just been prescribed Tolak for a very small lesion on my ear which has been diagnosed as actinic keratosis. I know it is a fluorouracil cream and I have driven myself into a state of complete panic and fear reading things all over the net about how awful and painful this treatment is! There already is a discrepancy an over the dosage; dermatologist told me twice a day and leaflet in box says once a day and that more often will cause a severe reaction! Waiting to dermatologist to come back to me but I’d much rather go with once a day. I’m also concerned as it is deadly for pets and I have 3 cats so I’m worried about them getting it on them inadvertently via a pillowcase or something I’ve rested my ear on.

Had anyone had an experience with Tolak?

thanks

latchbrook 1 month ago

Hi Willow195 and a very warm welcome to the group which I hope you'll find is both an informative and supportive place to be.

I haven't had actinic keratosis or been prescribed Tolak so don't have any experience to share with you. However, there are people in the group who've been treated for AK so hopefully they'll pop on soon if they have any experience with Tolak.

It would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

"Never regret a day in your life, good days give you happiness, bad days give you experience"

Willow195 1 month ago in reply to latchbrook

hi Latchbrook

thank you for your reply and advice. I will complete my profile later. Being new I just launched in without reading all the advice!

AMH16108d712f 28 days ago

Hi there, I have been using tolak for three weeks now on a lesion on my cheek which the GP belives to be an actinic ketosis, but they have referred to me to dermatology as well. I was told to use it once a day for 4 weeks, going beyond the lesion by 5mm on all sides. The area is now nice and red and starting to scab over. It's a bit itchy at night, but I put vaseline over it before I go to bed and that seems to help. I've felt tireder than usual and a bit sick at times, but nothing that's stopped my usual routine or meals. Good luck - I really hope this treatment works!

Willow195 28 days ago in reply to AMH16108d712f

Hi!

Thanks for your reply. glad to find another Tolak user and that the treatment seems to be working for you.

can I ask when you started to see a reaction on your lesion? I’m on day 9 and there seems to be no reaction so far. I’ve been advised by the clinician (don’t know if she is a dermatologist or not!) to apply it twice a day for 4 weeks, even though the information with the cream states once a day. I have queried this but still advised twice a day as the lesion is on my ear. Not sure if I’m covering 5mm either side but I’ll try to do that now. Also glad to hear your reaction seems to be tolerable after reading the horror stories on the net! I have also felt tireder but was putting it down to nocturnal worry!

AMH16108d712f 28 days ago in reply to Willow195

Hi, yes I had a reaction from day 6 (just checked back on my photos as I’m keeping a note of progress which is another thing the GP advised). It’s been very gradual though. I was prescribed Efudix once for a similar thing and had a much more immediate reaction to that so I wonder if Tolak is milder? I really try to avoid the horror stories online about this treatment and take each day at a time - and everyone will react slightly differently I think. Try not to worry!

Willow195 28 days ago in reply to AMH16108d712f

Thanks again for your reply. Good idea to take photos. I’ve just started to do that (not advised to but it makes sense). Yes, I think Efudix is stronger. I’ll just press on and see what happens!

thanks again.

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