Side Effects of Carac or Efudex

 

On 11/9/2008 Joaniepm wrote:

Hamburger, Sosick and Marge - hope you all are doing ok.  Sosick, I am interested to know how you are doing post-treatment.  I am 2 days post-treatment and so far, these have been my hardest days.  I am hoping that things will start changing tomorrow.  Hamburger, for some reason, I missed seeing the pictures of the guy that journaled his experience.  Thanks for including those.  It was very interesting and does give me hope.  Plus, I don't think I had it as bad as he did.  I had all of the brown spots and skin in my second week and part of the third.  For my fourth week, it is all just VERY red and painful.  I   made my husband read this guy's journal, so he could see that it is just not me that is "whining".  Overall, he has been very supportive, but I do not think that others understand at all how hard this is physically and emotionally.  I feel like I have ADHD.  I cannot concentrate on things and get distracted by the pain and itching.  Anyway, thanks for posting the pictures.  I am a little worried, because the spots that were the trouble places on my face do not look like they are going to heal and go away.  I would hate to think that I went through this for nothing.  Hope everyone is hanging in there. 

I share your pain. Went through this 3 years ago and am now again 15 days (of 21) into 2X day Efudex on neck, ears, face, and lips. Lasted only 12 days on the lips and the Doc said Stop !  Was also doing my hands and forearms but stopped at day 12 after feeling nausea. Being I stopped the lips, may restart the hands/arms today. Have found that Aquaphor really helps on pain and itching management. Also seems to go on easier than vasoline. I too have trouble concentrating on things but knowing only a few days left helps. This time around is not nearly as bad as 2005. I do find that exercising does help, especially wants in Oregon's damp climate. Rest assured your spots will heal and your skin will be like new. That was my experience and trust will be yours. Hang in there !

Celtic, this stuff plays some nasty tricks on you.  I am Day 3 post treatment and I thought I was not as red this morning (although I only got about 3 hours of sleep last night-the itching was awful).  I thought that this was probably the turning point; however, my face got progressively redder throughout the day.  Now, I am as red as ever.  Oh well, I just hope that I can sleep better.  I wish there was something to do for the itching.  I am using a cortisone cream and Aquafor/Vaseline???

 

On 11/10/2008 Joaniepm wrote:

Celtic, this stuff plays some nasty tricks on you.  I am Day 3 post treatment and I thought I was not as red this morning (although I only got about 3 hours of sleep last night-the itching was awful).  I thought that this was probably the turning point; however, my face got progressively redder throughout the day.  Now, I am as red as ever.  Oh well, I just hope that I can sleep better.  I wish there was something to do for the itching.  I am using a cortisone cream and Aquafor/Vaseline???

The getting redder a few days post-treatment was what I experienced in both 2005 neck, face, lips and 2006 hands and arms. Also in line with other stories and photos have seen. It will get better quicker than you think. Cells are still perculating from the Efudex. Unfortunately I have only one suggestions beyond cortisone cream, Aquaphor and Vaseline. Only thought is the cortisone cream a hydo-cortizone, like Locoid ? I used that in 2005 on my lips and face during my 1st treatment and post-treatment and it really helped.  Celtic

 

Hey everyone - hope you all are hanging in there.  I am ashamed to say that I have just spent the last 3 hours reading nearly every message on this site.  I can't believe that I just did that.  It's like I could not make myself stop reading.  There are such common threads throughout this entire forum (#1) Most people do not get enough info from their dermos (#2) Everyone reacts differently, but yet very similar (#3) the advice from the ones that have been through it has been invaluable (#4) it's painful (#5) it affects you physically, emotionally, spiritually - it's all consuming (#6) you now have empathy for people with chronic conditions, that you can and cannot see (#7) how much more you enjoy life when you feel better (#8) that people cannot begin to understand the enormity of this procedure unless they've been through it (#9) it's anazing how much pain you can tolerate (#10)  that this is worth it - I hope.

I am 4 days post treatment now - still very red and very itchy.  I am having great difficulty sleeping.  I am to understand that this will not subside for a few days.  Bummer.  The areas above my lip and on my cheekbones are the most painful.   I have worked the entire time, but have tried to stay in my office as much as possible.  Otherwise, I am a recluse.  I only go to the grocery store if I have to.  I just endure the stares.  I make my husband and children run my errands.  They will be glad when this is over.  I do not attend meetings - sweet.   I have saved tons of money, because I have not shopped in a month,  This part of it all is kind of nice.

One other thing that I have not heard anyone mention in pages and pages of messages - alcohol.  Someone did mention marijuana though.  Am I the only one that is partaking more so than usual here?   I usually do not drink during the week and then mostly some wine on weekends. However, I have started looking forward to my wine every night of the week.  This feels like a reward for me lately.  I am not sure it helps.  It may actually hurt - it seems like it dilates the vessels and makes my face redder.  But I am still enjoying it.  

I particularly enjoyed reading all of the messages from Redcat, Carol, Michelle, Sarla, AceAce, and a few others.  You all were a wonderful support for each other during your treatments.  I felt like I was reading a book and I could not wait to read how you all were feeling each day.   I hope that you all are doing great now.

Sosick, Marge and Celtic - I am wondering how it's going?  Thanks for your replies.  Joanie

joanie,

     your recent post will help others... if it was not for this board i would have quit the treatment.... can not began to say thank you to all that have helped me understand this prosses of treatment and post treatment.... i also agree my derm did not give me enough information... my upper lip in two spots is still very raw it looks like a blister that has broke open and cornner of my eyes.... maybe i should not have treated those areas as long...... but i did what doc told me the whole face once a day for 28 days.... now my questions is how many tubes of treatment did everyone go through i had 3 refills i only went through 1 tube during treatment...i am going to tell my derm about this web site... so other patients can understand the process i feel gret today

 Dear Sosick and all ... I am on my 8th application.  Two nights ago I couldn't sleep ... last night I slept like a baby.  I am wondering if its the calm before the storm.  My two questions:  I was prescribed one tube with no refills... it looks like I've already used 1/3, so I applied the cream much lighter last night.  Do you apply it light, medium or thick around your entire face?  and m y 2nd question... my face is only really red where the AK cells are.  Will my entire face get swollen, red and peel ... or just on those reds spots.  Thanks, continually, for all your help!  Margerino

Sosick, glad you are feeling great.  I can't wait until I do.  I used nearly one tube.  When I was into my second week, I went by my dermatologist's office to show them my face to see if this was normal.  I told her that I didn't think my tube would last 28 days, because it was over halfway gone.  She said that I was using way too much, so I cut back and it lasted me the rest of the time.  I have a little bit left.  It is hard to spread on.  It only spreads a little and it's hard to tell where you have put it.  I'm still red today and peeling and a little sore in spots. - above lip mostly.  But I did sleep well last night for the first time in a while.  I took Benadryl and I think that helped.  I was taking Tylenol PM and that was ok.  But i am not in that much pain now.  It's the itching that is driving me crazy.  I took 2 Benadryl, which is more Benadryl that is in Tylenol PM and this seemed to work better.  I am sleeping on the couch because I can prop my head up on the armrest.  That feels better to me than lying flat.  Also, it is a little cooler in our den, so that feels good too.  I will be glad to get back in my own bed.  

marge,

                  not until day 14 did my face start to react in different areas and yes my face did turn all red around day 16 EXCEPT for my forehead and the both sides of my face i mean by my ears just makr sure you keep posting messages i did a 21 day treatment and used 1 tube but she gave me a spcrit for refills.... it says to apply lightly i used about 6 dots then covered area with finger,, they say to use gloves..... but i made out better using my finger tips..... during treatment i kept my face moist with hydro aqu vas   i would put it on 2-3 hours after the efudex... get teady for messy pillow cases and alot of my clothes have greese stains  lol

Marge, I was told that one tube should last 30 days (in my case) and it did.  But, I was putting too much on at first.  I applied it much lighter after I asked the Dermatologist about how much I should use.  I made sure I covered every area of my face.  If I was doing this again, Heaven forbid, I would rub the cream all of the way into my hairline.  I stopped just short of my hair and ears.  I wish I had taken it a little further.  I also did not put the cream all of the way to my bottom lip, but I did with my top lip.  I would go all of the way up to both of my lips next time.  My second week was hard for me because that was when I first started hurting and could not sleep.  However, this was before I found this board and I was using Cetaphil wash and lotion and nothing else.  I was on fire all of the time - until I accidentlly found this and discovered that you can use other things.  My Dermatologist had never told me that.  So, make sure you have items that your Dr. says are ok to use and you will be a lot more comfortable.  Also, don't be shy about taking pain medication and sleep meds, if you can.  Ask your Dr. first.  I did not start using Vaseline or Aquaphor until my third week, so that was maybe why my second week was so hard.  My Dermatolgist gave me samples of Topicort, a cortisone cream.  But she only gave it to me after I told her the Cetaphil was miserable.  This stuff feels great.  I went to fill the prescription and my insurance would not cover it.  It would have been $70.  I work in a hospital, so I have great insurance.  When I told my Derm. about it, she gave me a ton of samples.  I was thinking, "Why didn't you do this to begin with"?  She also gave am samples of another cream called "Biafine".  I have read where some people on this board like that a lot.  My Dem. said the Biafine does not work as well as the Topicort.  I am saving my Biafine until I run out of the Topicort samples.  So, be sure to ask for samples.  They also gave me samples of Cetaphil (will save for later) and Cera-vu.  I did use Cera-Vu to wash my face during my treatment.  They said it was more gentle than Cetaphil and it was.  I read where some people use Dove for sensitive skin.  I am using that now post-treatment and I think I like it more the the Cera-Vu.  Now, I wash with Dove, apply Topicort and then Aquaphor in specific places all day.  I am still working so I cannot grease my face up all day.  The Topicort is very greasy and that's why it feels so good.  During the week, I let it sit on face until right before I go into work, then I have to pat my face with baby powder to absorb some of the grease.  So, my face is a somewhat dry all day.  I do keep Aquaphor on the worst places.  But when I get home, I grease up my whole face.  During treatment, I washed with Cera-Vu (washing is the most painful) in the morning and at night.  In the morning, I could not wait to put on the topicort.  My face would be so tight and dry.  I usually washed my face in the evening around 6, waited 10 minutes, applied Carac and then waited 2 hours to put on the topicort.  Sometimes, in the evening, I didn't even use the Topicort.  I wouldn't put anything over the Carac.  For some reason, my face felt great after I applied the Carac and it would sting later if I applied the Topicort.  This is a lot of info and I apologize.  Something different may work for you.  The bottom line is to make sure you make yourself as comfortable as possible.  Don't suffer needlessly.  Find out what creams your Derm. recommends that will keep you hydrated.  Hope this helps a little.  Joanie 

Hi everyone. This is my first post, after reading for hours and hours. Wow, my Dr derm didn't tell my much of anything about this. I started 2x day Efudex for 14days yesterday. That pretty much puts me at "scare the grandkids" by Thanksgiving. But I want to get it over with while the weather is cold and it is dark out. This is an awesome site with a lot of great info. I'm making my list for the drug store and grocery so I don't have to go out much. Thanks! Hope to hear from you soon...Pam