Fluorouracil topical and Pain: What Users Say (Page 2)

• Dog...
• January 28, 2020

For Skin Cancer "Age 70, male, excessive sun exposure. The dermatologist suggested 'Blue Light' on my face, but after the painful experience with this same treatment on my arms, I chose to use fluorouracil. I applied it for two weeks to my face, neck, and ears. On day 13, I went to the dermatologist with fears of open sore infection, plus I could barely open my mouth to eat. I was prescribed a topical antibiotic, a topical steroid, and Benadryl to reduce swelling, and an OTC product called CeraVe Healing Ointment. The CeraVe provided immediate comfort and relief from my misery and allowed me my first decent night's sleep in over a week. I started by applying CeraVe twice a day and then saw even greater benefit by applying every three hours or so. Aquaphor did not work as well as CeraVe for me. I have been restricted from sunlight and leave home only after the sun sets totally (no twilight) to run errands. Looking forward to healthy skin again and daylight hours."

• Joe...
• April 18, 2020

For Actinic Keratosis "Asked to use 5% fluorouracil cream by my derm, but I have always refused them. I have had Mohs surgery and a few PDT treatments over the past 15 years. Due to COVID-19, I am working from home and can take the time. My derm prescribed 5% at 2 times per day for 14 days. Applied to my entire face and forehead (minus the eyes, mouth, and chin). Day 4 - pain intense, made it difficult to smile, eat, or sleep. Face and forehead red, the skin weeps, burns, and is turning a deeper maroon color. At night I get chills but keep praying that I will make it through. Day 9 now, many areas have blended together around my nose and cheeks as well as some areas on my forehead and temples. The pain is difficult to handle, but not impossible. We are tougher than we think! It is important that I do this for myself and my family. I love them more than I hate the pain. You can do it too! Praying for strength for all of you who are about to join this battle and for those who are in treatment trying to tough it out. You can do it!"

• ras...
• Taken for less than 1 month
• October 23, 2019

Fluorouracil topical for Actinic Keratosis "Had to stop using Efudix on my face after 2 weeks and 2 days because of pain, dizziness, and mouth sores. My face was a fright, bright red all over as the cream seemed to creep when used. One week later, the rash has settled and the pain has subsided, but I fear it will be weeks before I return to my normal look. I have dry, flaky scabs on my face where scabs were not evident before Efudix. I regret using this cream on my face. My chest looks like I have been blasted with both barrels of a shotgun. Red welts everywhere as I dressed the whole area with Efudix as advised by my doctor. Not really painful, but starting to itch. I am 3 weeks into this area, I feel I could stop now, but will give it a few more days. The jury is still out."

• afo...
• Taken for less than 1 month
• August 2, 2012

Fluorouracil topical for Keratosis "Be careful not to exceed the recommended time period, otherwise, there will be extreme redness and pain. On the whole, it seems to work, but I have still got red skin after a few days without using it. The doctor recommended following with Eumovate, but I'm not too happy with the results."

• Sni...
• October 22, 2020

Fluorouracil topical for Actinic Keratosis "My GP saw some actinic keratosis on my head and said I should mention this at my appointment with a dermatologist. I am using fluorouracil 5%. The regime was 4 weeks once a day, followed by 3 weeks of healing, followed by 4 weeks. The 2nd treatment is to reveal and fix any actinic keratosis missed in the first. I have nearly finished the all treatment on my head - I am bald. I am 78 years old. The treatment on the head was itchy and, at the end, painful - the 2nd treatment did not show any remaining AKs. I could see that some of the 'rash' raised by the drug extended to my face, so I started a treatment there. This was more painful - particularly around the mouth and cheeks as these move if you smile or speak. I am in the healing phase now and will start a second treatment in 2 weeks. COVID has meant that my scary face has not scared the neighborhood! This was free on the NHS (National Health Service UK) - they are great."

• Rac...
• Taken for less than 1 month
• October 20, 2016

Fluorouracil topical for Basal Cell Carcinoma "I have basal cell carcinoma on my cheeks and face had lumps. I have Scottish skin. Started Efudex treatment, and after day 3, I became violently ill. For 10 days, I couldn't hold any food down, whatever. Both exit body points were hammered with oozing duck poop-like stuff I have never experienced before. Bloated stomach, gas buildup, and always on the toilet. After day 10, the symptoms eased, and I started to hold some food down. Currently on day 16 of treatment and my face looks like an iron has been applied to both cheeks. Very painful and still feel unwell. This better work because I have researched this product before commencing, and there were no side effects listed like I have had. Met another patient of Efudex with similar side effects."

• Dee...
• March 12, 2020

Fluorouracil topical for Actinic Keratosis "I am on Efudex for a few spots of actinic keratosis on my face. I am on day 15 and was prescribed to stay on it for 21 days. My face is raw, swollen, and monstrous looking. I feel like it’s super glued. I’m gonna do my best to stick it out for the next six days. Like many others, my doctor did not tell me about the intense pain and scary look. However, my father-in-law was on the cream a few years ago, so I knew what I was in for. I also went through phototherapy 12 years ago, where that result was immediate, I threw up on the way home from the pain. Efudex has the same pain, just a long drawn-out process to get there."

• Dav...
• Taken for less than 1 month
• August 18, 2020

Fluorouracil topical for Actinic Keratosis "My dermatologist said to apply on the face twice daily for 10-12 days. Well, my skin is super sensitive. After 2 days, I was red, itching, and in pain, so I stopped at the end of day 5. I’m at day 9 and look like I have severe sunburn with scaling, peeling, oozing, and burning. I am hopeful I’m about to turn a corner toward clearing up. Argh! It worked great on my legs after 2 weeks of treatment. My facial skin, another story."

• Anonymous
• February 12, 2012

For Keratosis "I am on day 12. It is very painful, I can't imagine continuing to apply the cream for the full 14-day treatment. Although after reading this forum, I will continue, as it sounds normal to feel pain at this point. I have heard the reaction is stronger between 2 to 4 weeks, so I'm anxious, thinking this could only get worse. Any help on that subject would be appreciated. I can apply the cream for 2 more days if I know that it can only get better. It seems weird to apply cream to such irritated areas, thinking I'm just gonna make it worse. I have had stomach surgery and given birth to 2 children, and this is almost more painful. I am confident the results will be worth it in the end, though. My doctor prescribed a steroid cream."

• BJ0...
• February 5, 2014

Fluorouracil topical for Skin Cancer "I'm treating slightly raised warts which only partially respond to tea tree oil, EGCG cream, tazarotene, and many herbal ointments containing thuja plus etc. essential oils. To those wanting to use Efudex, there are articles stating 1% /0.5% are better tolerated compared with 5%. But Carac is magnitude more expensive. I guess the lower % is less irritating as normal cells are not absorbing as much. If you have deep growth, 5FU may cause significant inflammation/edema that may be excruciatingly painful. I found using oral Serrapeptase 120k Ux2 (empty stomach) helps a lot in terms of managing inflammation and pain. It seems the warts are responding dramatically."

• Anonymous
• July 31, 2020

For Keratosis "1st time I used Efudex was 10 years ago, and it was very effective, but oh so painful. Years later, while at the derm, I was told of a new and better way to treat skin cancers. Using Efudex in combination with vitamin D will give you better results than Efudex by itself. Treatment is used for 5-7 days only, and there is NO PAIN!!"

• one...
• November 26, 2019

For Actinic Keratosis "Treating the whole face for 2 weeks, twice a day. Actinic cheilitis on lips, so am applying it to lips too. Aquaphor on the inner lip before application to block it. Lips react before the rest of your face, and treatment is shorter-7-10 days. The lips will crack, blister, bleed, and hurt. Use a straw. If you had any kind of sensitive skin or rosacea, or even hormonal irritable skin around the mouth and nose prior to treatment, this will erupt almost more than areas with cancer or AKs. ‘Normal’ skin definitely will be affected and will actually tend to scar and discolor more than cancerous areas after treatment. My first doc told me none of this, my second one did. I'll continue to put on AK areas, but not in those other zones. Get a good doctor. If they tell you to do your whole face, question that or get a second opinion-I now know I didn't need it, and spot treatment would have been much more appropriate, and that much of this suffering was not needed."

• Eda...
• Taken for less than 1 month
• March 20, 2020

Fluorouracil topical for Actinic Keratosis "Was told to use Efudex 5% 2x a day for 2 or 3 weeks, but pain would not let me do that. Used it for only 4 days and had a serious reaction to it. Had raised redness over 3/4 of my face, like welts. Had stinging and pain at 4 days, and the doctor said that 4 days was enough. Unusually fast reaction. Now I want to see how long it will take to get back to normal. Today is day 5. My sister and brother-in-law have also used it with good results."

• Dub...
• Taken for 1 to 6 months
• March 4, 2015

For Skin Cancer "I am on week 8 using 5% fluorouracil once a day for 6 weeks, M-F. Thank goodness I had weekends off, or I might not have stuck with it -- weeks 5 and 6 were exceptionally painful. My chest is still red and flaky, and there is still pain/itching (reminds me of shingles, just not as intense). And I'm able to sleep through the night again without waking due to pain when shifting in my sleep. I'm glad I stumbled on this site. I'm stopping on the way home for vinegar and moisturizer since several of you seem to have found relief."

• Dav...
• Taken for less than 1 month
• October 22, 2021

Fluorouracil topical for Keratosis "Have used before under the nose with good results - this time used all over the face for three weeks, dabbing on face twice a day as advised by doc - but not on forehead - first week not bad - second week really sore and painful - third week nearly unbearable, looked like a monster from the deep, face covered in scabs and peeling skin, so, so painful to touch, a few sleepless nights - rinsing face with lukewarm water was like putting acid on my face - now, three weeks after treatment and using a mild steroid cream to help healing, boy, was it worth it - told by my friends how it actually made my skin look younger and still getting better by the day. So stick with it, no pain, no gain in this case, never more true - just using good old E45 moisturizer to retain my new looks."

• Dav...
• Taken for less than 1 month
• October 22, 2021

Fluorouracil topical for Keratosis "Have used before under the nose with good results - this time used all over the face for three weeks, dabbing on face twice a day as advised by doc - but not on forehead - first week not bad - second week really sore and painful - third week nearly unbearable, looked like a monster from the deep, face covered in scabs and peeling skin, so, so painful to touch, a few sleepless nights - rinsing face with lukewarm water was like putting acid on my face - now, three weeks after treatment and using a mild steroid cream to help healing, boy, was it worth it - told by my friends how it actually made my skin look younger and still getting better by the day. So stick with it, no pain, no gain in this case, never more true - just using good old E45 moisturizer to retain my new looks."

• Jad...
• Taken for less than 1 month
• December 3, 2015

For Actinic Keratosis "I'm into week three of six of Effudex all over my chest after living in the tropics for 45 years. I have been told to use it on Monday, Wednesday, and Friday evening before bed. By Saturday, it is so painful and itchy, but quietens down Sunday and Monday until I have to start again. I can't imagine what it must be like using it twice a day for six weeks. I'm using Aloe Vera in the mornings, which calms the itching. Now I am getting scabs and dry skin and having a hard time keeping my fingers away from picking at it. Last time I used it daily on a patch on my face and was left with a red patch for nearly two years. I'm wondering whether some of you are suffering unnecessarily from Effudex being overprescribed. I live in the UK and don't have to pay much."

• Jan...
• Taken for less than 1 month
• September 21, 2024

Fluorouracil topical for Actinic Keratosis "I was scared to use this TOLAK cream. I am fair, freckled, and 60. I noticed red spots changing on my face. Doctors and 2 dermatologists convinced me to do it (took 6 years). My bathroom looks like a pharmacy. I was ready for whatever was going to happen. I have Aquafor, Cetaphil gentle skin cleanser, Cerave Facial moisturizer with SPF 30, Tylenol, and Benadryl, and I cut off the fingers of plastic gloves to use for the application of Tolak. Yes, a little over the top, but I felt ready. Eight weeks prior to treatment, I got my skin as healthy as I could. I went to a Medical Esthetician and did the 8 weeks cleaning/moisturizing steps (faithfully). Everything on YouTube, internet talks about Effudex, not Tolak. I carried on. Those YouTube videos were helpful. I took photos and watched my progress. Day 1-5 - not much change (felt dizzy at times); Day 5-10 a lot redder (itchy/prickly feeling - crease at nose painful - avoid putting cream there); Day 12-17 redder/scaly/burning in one spot."

• Jig...
• January 17, 2017

Fluorouracil topical for Skin Cancer "10 days into the treatment and my face is borderline unsightly. Had to stop the treatment on my chest because it started scabbing. Just hoping it starts flaking soon as expected! Major pain on my chest when I took it starting around day three. Have not experienced much pain on my face, just a little bit of tightness and itching. Trying to avoid putting moisturizer and makeup on, as my dermatologist says it will slow the healing. That is probably the worst part so far!"

• Car...
• Taken for less than 1 month
• April 27, 2015

Fluorouracil topical for Basal Cell Carcinoma "I am just about to start treatment for superficial BCC on my hands, feet, legs, and nose. Obviously, from all I have read, I am going to do it in stages. I am having to plan this around a conference, my children's exams, and prom dance! I know that it is going to get really painful. Has anyone done their hands or feet or both at the same time? I am doing a test patch on my arms at the moment to see how my skin reacts-on the advice of my doctor. Some guidance would be much appreciated."

• Jim...
• Taken for 1 to 2 years
• March 7, 2020

For Skin Cancer "This is my second round of skin cancer treatment with Efudex - I did a similar timeline of treatment in 2019. I have a history of BCC and SCC with multiple MOHs procedures and other excisions. I can honestly say this treatment is effective; however, it can be painful at times. All of my treatment areas have been scalp, forehead, and cheeks. The cheeks tend to be worse, especially in weeks 3 & 4. This poses a big issue when it comes to shaving. Other than not shaving for a few weeks, has anyone found a way to avoid basically flaying yourself?"

• Eas...
• February 5, 2020

For Actinic Keratosis "Can someone tell me, are the results from the cream similar to the blue light therapy? I've had blue light several times, and yes, it's painful, but works for a year or so. Anyone that's had both, if so, please share your experience with us. Due to business... I really don't need the down time. Thanks in advance."

• Car...
• Taken for less than 1 month
• March 6, 2018

For Skin Cancer "I am using fluorouracil for the second time. This time I am not doing my whole face, I am only doing my nose and side of my cheek. The first time I did not realize how many bad cells I would have. My entire face turned black and scabbed off. It was so painful and barely tolerable. I have had so many skin cancers removed, and I would rather endure the cream than have more surgery! I had a squamous cell going in my tear duct, had to remove my upper eyelid and use it for a skin graft. The surgeon was amazing! I am so happy there is this cream, as I am refusing any more surgeries on my face!"

• Red...
• January 14, 2020

For Actinic Keratosis "Been doing blue light 2 times a year 30 days apart for years. I have a little of everything: precancerous AK, BC, SC. A couple areas didn't seem to diminish pink discoloration on spots, ones on my jawline, and an AK on my eyebrow. So now trying this 2 times a day for 2 weeks. That little area on my jaw spread. I could see specifically if branching out to specific areas each day like a river. Now it has increased to very obvious damages. I'm treating more and more each day. I did stop after 14 days in the original locations and kept up the newer areas a bit longer. I'm glad to use it, feel in control. Never would have known how bad it was without this cream. In the 1st week of healing and it is painful and ugly. Ice packs at night, aspirin, Aspercreme with lidocaine and Vaseline. Luckily to have these weeks off over the holidays, housebound with a sprained ankle. Wear makeup only when I have to be seen. Will probably go to more areas on my face another time and chest. I'll check back when healed."

• Han...
• April 10, 2020

For Actinic Keratosis "I put off using fluorouracil for about a year (upcoming social engagements/photo shoots and memories of previous experience) and finally took the plunge. It's a big commitment. You'll be out of commission for a while due to disfigured appearance/pain. Take it day by day and tell yourself that everything will work out. I found reading about other people's experiences was helpful and supportive. You are not alone with your suffering. I did the prescribed 2x/day for 21 days and am currently in day 2 of recovery. My experience was similar to many others who shared their own experiences: first few days calm before the storm. Day 5-8 facial discoloration. Day 9 to 21 disfigured with intense pain. Terrible lack of sleep. Painful talking and eating. Definitely blot dry after showering. No shaving yet. Still could place well in Halloween contest. Taking one day at a time. Staying out of the sun. Hang in there to those currently undergoing treatment and especially to those facing the therapy."