Side Effects of Carac or Efudex

Hey, Everyone.

I woke up this morning with a solid red scab across my entire upper lip, had to get the bloodstains out of the pillow cases (even the pillowcase liner w/ the zipper) - woolite oxy spray did work for this. I think some kind of cutting/bleeding was going on while I slept.  Many of you are probably familiar w/ this, but it is kind of freaky.  At least I was sleeping, though, so I can't complain too much!  Yesterday, during the stinging phase after washing the area, it felt like 200 bee stings to the lip.

I saw a clip on FoxNews on Sunday about lip cancer and the use of lip gloss.  It described me exactly.  Since I was 20 years old, I have been wearing clear lip gloss, never opaque lipstick which would have provided some protection.  I would usually wear plain vasoline on my lips, always keeping a small jar in my purse (I graduated to Clinique in later years).  Of course, like the baby oil, it was magnifying the intensity of rays.  Oh well.

My good.....great news, is that I went to the doctor yesterday, Day 28, of Carac x 1 to the upper lip, and she told me I could stop.  I am scheduled to go back in 6 weeks.  I am going to take the summer and fall off and maybe (if I can muster up the courage), do the chest next winter.  She says that needs to be done.  In the meantime, I will be going to the beach oceanfront for a week in July!  With all my lotions and potions and hats.  The best buy is the old-fashioned zinc oxide, you can pick it up at the pharmacy counter for $1.08 a tube.  It does not sting as much on the tender lips as regular sunscreen or spf chapsticks, those have more chemicals.

Here's an interesting read, if you haven't seen it.  http://www.carac.info  Be sure to read the sections "For Healthcare Professionals"

Take good care fellow flouro users, and remember to take your multi-vitamin or something ... to be sure you are getting enough Vitamin D!

If you are out there reading this, please share your story with us.  Sometimes I feel like I am almost the only one writing, and everyone is getting sick of hearing from me ~~~

Use Aquaphor...much more soothing than vaseline, and less 'gummy'. Slather it on thickly and often. It's available OTC, found in the hand lotion area usually. Drugstore.com also has it. Get a big jar plus small tubes for your purse/pockets. Then you'll never be without it! Hang in there. Lousy

Hi, Outdoorgirl!  Welcome!  and Good Luck with your treatment.  Like Lousy, I also used Aquaphor (instead of Vasoline), and BabyWipes (I used Huggies Natural and rinsed them first), dove for sensitive skin, Benedryl (I used Children's liquid) and Tylenol as needed.

Suz, Lous,and JCB, how are you doing!  Gloria, have you started on your Aldara yet.  Hope all is well.

hey everyone!

im now 9 day post 23 day tx 1/day carac and finally feeling human again.  for awhile i was even too sick to write.  i had to stop tx early due to what my derm called an "extreme reaction". my face and chest blistered and bled. got a fever and was just miserable.  my arms and back got mostly raised red lesions which are now peeling.  the derm says that even though i went thru hell during the tx, i am going to be pleased with the final outcome.  he says my reaction was proof of how really bad i needed the tx.  my face and chest are still very red, itchy, and burning but im able to go out after applying makeup.  yesterday was the first day i went out in public.  i feel like a butterfly that has morphed. (or a snake who shed its skin) i ended up taking over two weeks off work.  i return next week.  i think doing such a large area all at once was too much.  when i stopped the tx, i was put on  a topical steroid (ouch), an antibiotic cream, and an oral antibiotic for 10 days.  now im just taking oral antibiotic and using the steroid  ointment for 1 more week.  i still have many areas that did not respond to the tx but the derm said i have to wait till im completely healed before he'll discuss further tx.  i am forever grateful for the support and info i received on this site.  (far more than i got from my derm)   some of the things i learned from this site and from the tx are:

1.  buy stock in aquafor

2.  get used to feeling like a greaseball

3.  you probably will need to take some time off work

4:  get use to having bloody pillow cases in the morning

5.  buy stock in benadryl, advil, tylenol (or in my case percocet!)

6.  throw away any mirrors in your house

7.  get use to trying to explain to people why you would do this to yourself

8.  STAY OUT OF THE SUN!!!!

hey carieann,

great hearing from you.  i didnt treat my lips.  now im worried i should have.  it sounds painful though.  what made you treat your lips?

outdoor girl,

hang in there.  if  you have any questions you can usually scroll back and find an answer somewhere on this site. its great.  good luck!

                                                suz

Thank you for writing back! I have felt so alone in all of this since I don't know anyone but you all who has gone through this. I am only on day 5 now and am beginning to feel stingy and to look blotchy. I will get the Aquaphor tomorrow. Thank you again for answering....I feel less alone

One more thing, my derm prescribed 2x a day and most of you are doing once a day....any ideas about that? I also read the site that carrieann suggested and it also talks about 1x a day. I hope my derm is correct in prescribing 2x a day. I am happy for you suznj, that you are finishing up. I read your messages and I was really moved by how hard this has been for you! Goodnight all,

 

hey carieann,

great hearing from you.  i didnt treat my lips.  now im worried i should have.  it sounds painful though.  what made you treat your lips?

                                                suz

Hi Suz!  I don't think you should have been treating another square inch on that go-round, you were already treating so very much - ouch!  My original problem was just one little spot on the outer border (they call it vermilion) of the lower lip.  Laser didn't work on it, so I was prescribed carac, which I used across the whole lower lip.  And got a giant reaction (everywhere but on the one little tough spot).  I continued to treat the one rough spot for a total of 6 weeks, and it finally seemed to go away.  It almost seems like a miracle.  I hope it won't come back; I will surely keep a close eye on it.  The whole bottom lip is still very tender one month after stopping carac.

Outdoor Girl, I have noticed that a few others are prescribed carac 2 x per day, but you are right, most are just x1.   I imagine it will cause you to react sooner, perhaps you will get it over w/ sooner!  The whole process seems to take way too long.  It is truly a test of patience.  Enjoy your days out and about while you feel and look 'okay!'  If your kids are young, they won't even notice or care, when you get a little rough looking~

hey carieann,

quick question.  i had alot of little white dried spots on the outer edges of my top lip.  is that what vermillon look like?  i kinda stayed away from my lips because the literature said to avoid the mouth.  maybe i should have put it there.

 

outgirl girl,

i think theres a difference in the two types of cream.  i think carac is once a day for 28 days and efudex is twice a day for two weeks.  anyone else out there know for sure?  hang in there.  my skin is looking better day by day.

                                       suz

Suz, vermilion is simply the outer edge of the lip, all the way around, where it meets the face (everyone has vermilion, that's not a bad word).  Leukoplakia, on the other hand is bad.  They are white patches on the lip, us. caused by the sun.  I did have several of those on my lower lip and I guess that's what blistered up so badly.  They seemed to be closer to the inside of the lip. They weren't bumps or anything, just white pigment on the lip where it should be pink.  

I saw my dermatologist today, reviewing the horrible pain and sleepless nights I experienced before I gave up and gave in and called her, unable to continue with the process any longer. At the end I couldn't bear to wash or rinse my face and the very thought of applying more Carac sent tremors through my body. So, she said I had a STRONG allergic reaction to Carac and should've discontinued it sooner. She said NEVER to use it again! But, how was I to know? Without this site, I wouldn't have guessed that was the problem. I'd have continued on until I was truly insane. I was close enough, as it was. Just ask my family! THANK YOU for being so honest about your treatment. Because of you, I knew my face had had enough...actually, more than enough. I'm through with the treatment, using Aquanil HC for a couple of weeks. I sleep through the night (thanks to Aquaphor!) and am comfortable during the day. A GREAT sun block, although pricey, is C.O.T.Z SPF 58. It contains only titanium and zinc (hence its name) and since it contains no perfumes, etc., it doesn't sting or burn. It's sort of tan colored, but rubs in well. I need no more treatment at this time. I'll continue to check in with you. You were my life line and I want to be a resource to others. My parting message: call your doctor and make him/her listen. As mine said, it shouldn't be a miserably, painful process. If it is, something is amiss. Thanks again for the Huggies, Dove and Aqualphor recommendations. Tylenol PM and Benalryl did nothing for me. Stay brave! Lousy