Zyclara

I started using zyclara7 days ago and like you, my main problem has been with blisters on lips and inside mouth. My doctor wanted me to use for 30 days straight. Can't do it. Can't sleep or eat. Drinking ice water with straw is only relief. Doc said stop for now and when cleared up start again for the 2-2-2 schedule. Not sure I can handle but will try. Might do few spot areas instead of all around the mouth (excluding lips). Just miserable.

I was on Zyclara for my bottom lip; on the lip for 2 wks and off 2 wks times two.  Now off treatment for four weeks and can finally say the lip is almost well.  I have a brand new lip but I got it through pain and suffering.  My lip swelled up at least twice the normal size with much weeping, crusting and bleeding.  Generalized body aches and pains (flu-like symptoms) that ended a week ago.  The treatment works, just be patient.

On Sep 26, 2012 6:48 PM Granishoe wrote:

I was on Zyclara for my bottom lip; on the lip for 2 wks and off 2 wks times two.  Now off treatment for four weeks and can finally say the lip is almost well.  I have a brand new lip but I got it through pain and suffering.  My lip swelled up at least twice the normal size with much weeping, crusting and bleeding.  Generalized body aches and pains (flu-like symptoms) that ended a week ago.  The treatment works, just be patient.

Thanks for pep talk. I started zyclara again 3 nights ago even though my lips arent totally healed but swelling finally went down. At least I have been able to start talking normally. But lips are starting to swell up. I can handle that, just not the immense blusters. Hopefully won't be as bad and I can get through it. I am putting vaseline on lips at night in hopes to lessen blistering. I know I need to as there is much crusting.

I went to my skin cancer Dr on 9/28, due to some really itchy AKs on my back.  I have had numerous AKs frozen off my face (blue eyes, red hair) and one basal cell surgically removed.  She did a routine exam of my face and I said I was having to wear heavy makeup to cover all the white scars and AKs now, and asked if there was an alternative to more freezing of the AKs. 

She prescribed Zyclara, 2 wks on, 2wks off, and just said if any spots turn pink to stop before the 2 wks and wait 2 wks before trying it again.

On 9/29, as I was getting ready to apply the Zyclara for the 2nd night, I noticed a swollen area at the base of my bottom lip and realized a cold sore was starting.  I remembered that Zyclara is an immune supressor, and herpes simplex likes to come out when ones immune system is stressed (or apparently when it is suppressed).  I took an Acyclovir capsule.

This morning the cold sore was bigger and felt tingly (like cold sores do).  I took acyclovir throughout the day and am not planning on putting the Zyclara on my face tonight.

I read through the side effects on the Zyclara website and never saw anything about cold sores.

Did anyone else try acyclovir when their cold sores broke out after using Zyclara?

If I were you, I would go directly back to my dermatologist and discuss your immediate physical change so your doctor can examine this area now. you should not assume this is a cold sore. the doctor will have a better idea what is happening and when. A fast developing sore after one day of treatment with zyclara is something that should be evaluated quickly.

I have had about 8 skin cancers, mostly basal and one squamous appear on many areas of my body but not on the face so far. My dermatologist suggested prophylactic treatment of the face with photodynamic therapy (PTD) to prevent having to 'cut or excise things' and avoid facial scarring when possible. She also stated freezing items may not be the best method, some cancer cells may proliferate below the developed scar and go undetected. After I completed my PTD I was still concerned about the area around my lips. This area is very wrinkled and does not look healthy (I am not a smoker). She suggested using zyclara and I did apply this around my lips and some did get on my lips by accident. I have never had a cold sore but I did develop large sores on my lips after several days of treatment. I stopped treatment due to the pain after about 8 days.  She stated these were not cold sores but rather 'bad skin' that needed to be treated. She encouraged continued treatment at a pace I could tolerate. Each treatment got better, less sores appearing. She further stated applying zyclara directly to the lips was an 'off label' use, not recommended by the company but was effective for treatment in her opinion. I do not apply the zyclara directly to my lips but circumorally but it is hard to keep it from leaching, sort of like how lipstick will sometimes bleed. I used it more sparingly with subsequent applications and this worked better but I still developed sores on my lips but they did get smaller each time. I still need to continue since I am in a warm weather area for the summer so I will restart in the fall.  I was very frightened by the large sore on my lower right lip and thought this area was skin cancer, it looked like a basal cell to me and this area actually has a slight color bleed (the margin of my lip line is not clear and seems to blend into my skin) and frequently peels for no reason, two of the many signs of possible skin cancer of the lip.She did tell me if my lip developed a sore very quickly I should see her right away. She would be more concerned about this rather than after several days of treatment.So I felt reassured I was doing the right thing and addressing it before it became a true skin cancer.

Although I noticed reddening of spots after 2nd night, the blisters on my lips did not form until I think the 5th day. I did not try Acyclovir so don't know if it would work.  What I had were definitely blisters though and not cold sores which I believe to probably be the result of sun damaged lips. I am now on the 15th night (stopped for 4 days after the initial 7) and have really tried avoiding getting any on my lips by using vaseline. I believe this has helped immensely, but I believe the creme does "bleed" like the other person referenced, to your lips when you get close. My upper lip has started swelling more after last night as I believe I got more creme on the edge. 

I am somewhat confused by the statement "if any spots turn pink to stop before the 2 wks and wait 2 wks before trying it again" as my understanding is that is what Zyclara is supposed to do, turn areas red/pink that have the damage. If no areas turn red and get crusty, my thought would be you wouldn't have any sun damage and then why would the doctor have you do this....especially as costly as it is. I would also get clarification from your doctor on that.

My personal opinion is the doctors do not clarify you should apply a "light" coat as I think that was also part of my initial reaction, possibly overdosed when I applied it so my reaction was much stronger around my lips. My initial thought when applying was "more must be better" but I advise against it. Since my doctor had initially said apply for 30 days straight, I am going to attempt to apply for 2 more weeks and hopefully will be done with it.  The crusting and redness is definitely unsightly, definitely don't want to go out anymore than I have to...As long as the blisters do not come back on my lips, I think I will get through this.   

My Dr actually gave me no instruction about what quantity to apply, she did tell me to apply over my whole face (not just to any AK places) nor did she tell me to wash it off in the morning.

I guess she assumed I would read the enormous instruction sheet that was enclosed (I didn't, but I did go online and read side effects).

I actually assumed (wrongly I guess) that this was a cream similar to Solarize gel that my husband was given by his dermatologist some years ago.  He was told it would take care of his AK too.

What happens if Zyclara is only applied intermittently?

On Oct 01, 2012 11:01 PM lgnutah wrote:

My Dr actually gave me no instruction about what quantity to apply, she did tell me to apply over my whole face (not just to any AK places) nor did she tell me to wash it off in the morning.

I guess she assumed I would read the enormous instruction sheet that was enclosed (I didn't, but I did go online and read side effects).

I actually assumed (wrongly I guess) that this was a cream similar to Solarize gel that my husband was given by his dermatologist some years ago.  He was told it would take care of his AK too.

Other than just telling me to apply Zyclara at bed time, my doctor didn't give me any other info either as far as how much or for how long or to wash off in morning.  When I read the long directions, that is when I saw for 8 hours and wash off in the morning, I also noticed where it said a "thin layer to affected area and do not use more than is needed to cover the treatment area". Generally mine is on probably for 10 hours a nite before I remove it as I am retired and can finally sleep longer!!

I am on my secong 2 week round and I put it in the same spot, above my upper lip.

I seem to get a blister on my lower lip after the first week of treatment and it last for about 3 weeks, last time I got this it got very infected and I ended up on antibiotics, I see that others have experienced this and not sure I can continue with this treatment for another 6 rounds.

I do get horrible headaches, nausea and fever, it is not much fun.