I have been fighting a losing battle with toenail fungus on my big toe and have now lost half of the nail and it is painful at night
I am not able to use the prescription meds to fight it as they are all contraindicated with Ibrutinub
Has anyone had this problem? How are you managing it?
I have read that it may be a more serious issue for those of us who are immune compromised.
The medical professionals I have consulted so far don’t seem to be concerned but I am uncomfortable and wanted to reach out to the group for any thoughts or suggestions
Thank you and warm regards to everyone
Heather
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Bell53
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Get them to check Terbinafine because when I was on Ibrutinib that’s what I was prescribed. Took 7 months but it cleared up. I also had medical pedicures to keep it in check.
I haven’t had fungal nails but a friend did and introduced me to it because she knows I’m a natural nut. I use it instead of antibiotics. Well, my husband did when it was looking as though he might have a chest infection brewing. I used it on an infected cut. It’s brutally potent so be careful when using it on skin. Be sure to dilute it with carrier oil
Get to a really good podiatrist for evaluation. I have had toenail fungus issues for almost 5 years.
One time I banged my toe that had fungus and developed an abscess within 3 days and when a surgeon expressed it he pushed the infection into my bloodstream and I almost died from sepsis.
I have long since recovered and have tried everything to get rid of the fungus including removing the nail but it always comes back.
I now treat it topically with clear tincture of iodine twice daily and it is much better and I highly recommend it and it is very inexpensive without any drug interactions.
Keep your nail clean, dry, nail short and file it to keep it thin.
Half of the nail had to be removed a week ago as it had completely lifted from the nail bed. (from left to right not top to bottom). Over the last couple of days it has become painful especially at night. Also looking slightly swollen and red at the nail bed. I wasn’t given any specific treatment instructions from the Chiropodist but now it’s becoming a concern.
Your mention of sepsis has me quite concerned now
How long did it take for that to develop?
Not sure if I should go back to the Chiropodist or see my GP
Heather as Jeff and I suggested find a podiatrist, they are far more technical than chiropodists. I haven’t used, and no idea how good the treatment is, but there is the option of laser treatment.
Heather, I will echo Colette and Jeff, I think you should see a GP as you might need an antibiotic cream - I usually use fucidic acid as I have suffered with a fair deal of skin related conditions and issues. It usually works quite quickly. I hope you find something that works for you. Petra
I had toenail fungus for over 20 years, but finally found
ciclopirox 8 % Solution Commonly known as: PENLAC or Ciclodan it is a nail polish you apply nightly and remove weekly with acetone (nail polish remover) and repeat the cycle until the white thickened area grows out - over 6 or more months.
I’m sorry you’re having this problem, it’s annoying and miserable dealing with more stuff on top of the CLL I’ve just developed a little area of itchiness on my left foot under my toe! It drives me insane and I keep applying eczema cream . But the thing I was going to mention that I now take is chlorine dioxide , I’m on 2 mls a day and it’s meant to help with lots of things the body can get like fungus’s. I heard about it from a guy that takes it after he’s survived pancreatic cancer and is doing really well. He also follows a vegan diet which I do anyway , have been for 7 years. But he swears by the chlorine dioxide! Hope you manage to clear it up soon xx
"Chlorine dioxide is added to drinking water to protect people from harmful bacteria and other microorganisms. Most people will be exposed to chlorine dioxide and its disinfection by-product, chlorite ions, when they drink water that has been treated with chlorine dioxide. The EPA has set the maximum concentration in the drinking water at 0.8 milligrams per liter (mg/L) for chlorine dioxide and 1.0 mg/L for chlorite ion. The concentrations of chlorine dioxide and chlorite ion in your drinking water, however, may be lower or higher than these levels.
How can chlorine dioxide and chlorite enter and leave my body?
Chlorine dioxide and chlorite usually enter the body when people drink water that has been disinfected with chlorine dioxide. Because chlorine dioxide rapidly breaks down in air to chlorine gas and oxygen, you would not likely breathe air containing dangerous levels of chlorine dioxide, but if you did, it could be absorbed across your lungs. You are not likely to encounter chlorite in the air you breathe. Whether chlorine dioxide or chlorite on your skin would be absorbed to any great extent is not known.
Both chlorine dioxide and chlorite act quickly when they enter the body. Chlorine dioxide quickly changes to chlorite ions, which are broken down further into chloride ions. The body uses these ions for many normal purposes. Some chloride ions leave the body within hours or days, mainly in the urine. Most chlorite that is not broken down also leaves the body in the urine within a few days after exposure to chlorine dioxide or chlorite.
I've had toe nail fungus for years, it has spread to all my toe nails. I can't take the pills due to other medical conditions and my CLL medication. I see a podiatrist every 2/3 months, who files them and keeps them tidy as I found the thickening of the nails (and look of them) the most disturbing. Very interested in that nail varnish idea mentioned in another reply.Luckily no infections, though I do have an antibiotic cream my GP prescribed, if I have any redness, or the nail comes away, I use it.
Thank you for posting as it has made me aware of seriousness of fungal Infection. I was told just last night by chiropodist to get a spray - Lamisil. I never gave a thought to having any affect with Acalabrutinib but will check this out now.
Apple Cider Vinegar is being suggested by a few Podiatrists here as an ongoing solution. Not diluted! I have half a bad toe from dropping heavy object on it nail cut out now. And that’s the treatment given. It is a contagious fungi so anything scissors, nail file clean appropriately. Be careful of nail bars!
YES! I fought toenail fungus that split the nail of my big toe as well. I began squirting apple cider vinegar on the toe each day. It went away! But then I stopped using the apple cider finger each day and it is back. Now I treat everyday again and can see it is improving. I can attest, it works.
I had toenail fungus on my big toe. My primary care physician said he could order up a drug that would take care of it and might be hard on the kidneys. Or, use Vicks Vapo rub on the nail nightly. I opted for the Vicks and put it on in the am, after a shower and before bed. It took about a year but it cleared up.
Either terbinifine (Lamisil) or itraconazole oral antifungal therapy (pills) work for most nail fungal infections but often requires 6-12 weeks of therapy or longer. However as many of us know, not everyone responds. pmc.ncbi.nlm.nih.gov/articl...
I took terbinifine for 2 months followed by itraconazole for 2 months. Terbinifine was then retried since my big toe nail was still thickened and discolored and spread to the 2nd toe.
Like idratherbefishing, Vicks VapoRub cleared the fungus within a month for me. I was also taking terbfinifine so it may have been coincidental, but I think it worked - recommended by my dermatologist PA.
Fucidic acid and Cephalex are treatments for bacterial infection and will not affect the toe nail fungus. Secondary bacterial infections can occur and the redness & pain sound more like that to me since my toe fungus was not painful. When the pain & redness are resolved then the fungal infection treatment can start.
Terbinifine does required blood tests for liver function as noted previously. Toes heal slower than fingers.
My doctor told me about this home remedy: soak your toes daily for about 10 minutes in a mixture of half yellow Listerine mouthwash and white vinegar. Change the mixture every few days. I changed it about once a week. It took months to work but it did. The mixture is a little smelly so I used a cat litter bucket with a lid so I could cover it between uses. It’s not convenient but I stuck with it. Tip: I kept it in the bathroom and used it during BMs.
I have had the same issue and had lost my entire nail. It was a long road to mend, but my dermatologist recommended Lamisil ointment along with a prescription Ketoconazole cream. And most important: daily soaks with one part white vinegar and 2 parts distilled water. You can opt instead to mix 12 tablespoons of white vinegar with one gallon of distilled water and soak by applying a soaked washrag with the mixture to the affected area. Leave on for apx. 20 minutes or so. The vinegar/distilled water routine really pays off!
My wife had a serious problem with toenail fungus last year. For what it is worth, I will tell you how she eliminated it: She went to Walmart and purchased a plastic container that she could rest her feet in. In the container, she poured a mild mixture of Clorox bleach and water (a couple of inches high in the container). She soaked her feet in this solution for 10 minutes a couple of times a week (while playing on her iPad). I don't recall exactly how long it was, but a few weeks later, the toenail fungus was gone. I guess you do the procedure until you see the fungus go away. Anyway, I believe that if I have this problem, I will follow this procedure. I don't want to have another pill added to my daily ingestion....
I too, have been plagued with nail fungus for years, even before the diagnosis of CLL. I was perscribed Ciclopirox nail lacquer by my dermatologist. She stressed that it would take at least a year. I started in June 2023. I guess with the CLL it's taking longer. At it's worst my nail was loose and I was sure I would lose it. Now it looks like there's an end in site--the area now looks like a french-nail polish. I no longer have pain. I rarely wore shoes, sticking to sandals and think that helped, but now that cooler weather is upon us I'll just have to see.
Good luck with your endeavor to heal--it's a long road!
I had a big toe fungus which did spread to 3 toes. Painful. Dermatologist prescribed antibiotics cream and a photo therapy lamp. Used it twice a week and cream. Took 1 year now just a thick toe nail. Planning to get a pedicure. Feet look bad. Podiatrist only cuts the nail, but they did prescribe a nail polish. So far, I'm and occasionally I do use Vicks rub. Wear clean white socks when ever possible. Good luck 👍🏽
Here's an overview from the American Academy of Dermatology which echoes what many have said about this annoying condition: aad.org/public/diseases/a-z...
I have been living with toenail fungus for many years but whether it is anything to do with CLL, I’m not sure. What I do know however is that any amount of treatment in the form of lacquers and ointments painted on top of the nail has been absolutely no use for me at all, and over the years I’ve tried all the proprietary brands.
My podiatrist tried the latest method of drilling a series of small holes in the large toenails and then dropping the antiseptic solution in through the holes directly onto the nailbed. That initially made a slight improvement but the toenails soon reverted back to being infected.
I now live with the podiatrist tidying the nails up as best as possible every 6-8 weeks. The toes or the nails don’t hurt or worry me so it’s just something I’m going to have to live with.
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