Efudex cream
Hello from the UK.
Came across your site whilst researching side effects of Efudex cream. Apologies in advance for the long post.
My GP was concerned by a couple of keratosis on my face. The procedure here is to initially take photographs and send to the dermatologist for an initial inspection. This was done and an appointment was duly made to attend. This was March 20 just as the pandemic was breaking. I received a telephone call from the hospital saying they were cancelling all appointments and couldn’t predict how long it would be before they would resume. However they could prescribe a topical cream Efudex over the telephone and could send me the prescription in the mail. No in depth discussion/instruction was given, just to apply as prescribed. This was started and after about a week I began to feel very fatigued and generally unwell. It wasn’t Covid. The areas where it was being applied were red and the skin was beginning to break and bleed a little. I thought this was just normal. I carried on for a some days further but still felt rough. I didn’t think of the cream at first then after consideration I wondered if it could be the problem. It was difficult to speak with a medic as Covid was a serious problem. I decided to stop the treatment and follow up on it at a later stage. I began to feel much better within a few days and to be honest forgot about it.
I would be interested to hear from any of you if you have had this issue and then went onto to develop heart problems. I know this may sound so silly and once again I apologise. A couple of months later I developed myocarditis and have suffered permanent damage. The cardiologist seems to think it was caused by a virus. I am adamant that I hadn’t been ill for months before, my husband and I had been isolating since the start of the pandemic as I am a carer for a vulnerable adult. The only time I felt unwell was when I was using the Efudex. I haven’t mentioned this to any of the medics in fear of being thought a fool. I have come across a report saying heart failure can occur but it is extremely rare. My health has deteriorated and I am trying to find answers. I am intrigued if anyone has developed a heart condition. Many thanks for reading.
...No apologies necessary! We are glad you are a part of the community!
I have been a regular Efudex user since 2014. It is not uncommon at all for me to feel generally run down and unwell while using the cream. I have heard many patients say the same. What you described as far as your skin is concerned is very typical--redness, irritation, and some bleeding towards the end of treatment.
Here is an article on the side effects reported by many users:
https://skincancer.net/life-with-skin-cancer/efudex-side-effects
While I haven't experienced what you have described, I do know a skin cancer patient who had something similar occur. She experienced some pretty frightening issues with her heart and was hospitalized. In her case, she was told that the Efudex could have aggravated a heart condition she was unaware she had. I don't think you are foolish at all to consider the possibility. Our bodies are all so different, and our tolerance of medications varies greatly. It would definitely be worth mentioning to your doctor. Efudex can be a very strange thing--and it is a chemotherapy cream after all.
I am keeping you in my thoughts. I hope you are able to get some answers. Please know that we are here for you!
April, SkinCancer.net, ModeratorMany thanks for your response April, much appreciated. It’s very interesting you had heard of this occurring with another patient.
...it's been rare to hear other Efudex users mention heart issues. Please keep us posted on your progress! We are sending you hugs for healing! April, SkinCancer.net, Moderator
I have to say that that is some pretty lax medical treatment! No treatment instructions, no pre-warning of side-effects, no follow-up, no nothing!
I've read that fluorouracil (Efudex/Efudix/5FU, etc) can cause extreme reactions in some people. Apparently one difference between the expected reactions - redness, inflammation of the treatment area, etc - and an allergic reaction is that the cream affects the WHOLE area, not just the problem areas. So instead of a blotchy face, an allergic reaction will result in every square inch of the face inflaming.
Heart problems are not unknown according to this video made by a couple of oncologists: https://www.youtube.com/watch?v=Ous3RiGil-8I too was prescribed Aldara for my lower lip in April with NO info given by Dermo!! I was freaking out and started researching all night as I couldn't sleep anyway. New Dr and now new meds for new areas - Fluro. cream 2x a day on upper chest which has spread to entire chest up to collar bone- ugh. And it's 100 degrees here. I look like I was shot with 100 be be guns. Really cranky and miserable but learned so much just reading a few posts as I just joined. Thank you so much for being there ...Dogwalker ...I never cease to be amazed at the lack of information on these treatments. None of us should leave the doctor's office unprepared for how grueling these creams can actually be. I am so sorry you are dealing with the heat on top of the discomfort. I totally understand feeling like you have been shot with BBs. That is a highly accurate description.
Heres' an article that might come in handy:
https://skincancer.net/life-with-skin-cancer/efudex-first-timeYou are never on this journey alone. We are here--reach out any time!
April, SkinCancer.net, Moderator
Thank you so much for reaching out! I had an AHAA movement last nite-- MDs don't give info on side effects during weeks of using these meds as if they told us even the best possible scenario( still not great) many would be hesitant to use the prescribed meds/ treatment plan! I admire I dropped out of the 3rd week of aldara on my lower lip...got a new Dermo, but same with holding of "what to expect" ...I have also seen two different doctors for Efudex treatments. Neither sat me down and had "the talk." By the time I saw the second one, I was well educated and knew what to expect. I am like you--I fully expected my doctors to be open about the possibilities.
I haven't used Aldara. The lip is such a difficult area to treat. It makes me cringe to think about doing it again. I am glad you have that behind you!
April, SkinCancer.net, Moderator
I did my lips, pretty intensely, when I did my face. I even smeared more there because I 100% knew I had problems there. And while it was as uncomfortable as every other aspect of 5-FU on your face, I think it was worth it. Mainly the outer part of my lower lip, as you'd expect, lit up and scabbed, etc. Two months later and they seem much more "elastic", less tight, if that makes sense. Also, if you have damage there, what else are you gonna do? Leave it and have it cut out later? No thanks!
