fungal infections

[MsChief]

I developed toenail fungus. I have been on Ibrutinib low dose for about 6 years. I just read a Journal article stating that Ibrutinib causes fungal infections. I have been self treating topically - also saw a podiatrist but am not taking anything internally. I suspect it will not resolve. Is anyone else dealing with this. Not good if it progresses internally. I haven’t discussed it with my oncologist yet but will at mynext I IG infusion appointment next week. A patient in the article was advised by her oncologist to take Biotin 2.5mg. MsChief.

[Seok]

Hi Mschief

I was diagnosed with fungal toenails too. Dermatologist prescribed Penlac nail polish. Not sure if it’s working as I only started recently.

Seok

[Jm954 Administrator]

The main threat with regard to fungal infections in patients on Ibrutinib was lung infections. I wouldn't be overly worried about your toenail but definitely speak to your Dr who may be able to prescribe something more effective than over the counter medication

Jackie

[mrsjsmith]

As Jackie said over the counter are not usually strong enough, certainly according to my GP but several of the prescription ones are contra to Ibrutinib so get advice first. They are also slow working, mine took about 6 months to grow out.Colette

[Mprm]

I’m on Ibrutinib and have spots of fungal infection on two toenails, which I’ve been treating with over the counter remedies and a topical prescribed by a podiatrist.This has been going on for nearly four years. The podiatrist said it looked like the treatments were keeping it from getting worse, but offered little hope it would clear, though advised persistence and will prescribe a stronger topical, Jublia, if there is no improvement by September. So frustrating!

[michaeledward in reply to Mprm]

I've been on Ibrutinib for 6 years and have had issues with a fungal infection on one of my toes for a couple of years. My podiatrist prescibed Clotrimazole to be applied twice a day. This medication has kept it somewhat under control but has not cleared it up. (I'm not really very consistent in applying it daily, so that could be my fault.) At my most recent appointment a couple months ago, she told me to use a nail file or emory board to rough up the toenail before applying the Clotrimazole to help the medication get into the toenail. I just need to be more consistent in applying it daily. I'm not sure why your podiatrist is waiting until September before giving you a prescription.

[Mprm in reply to michaeledward]

I was sent home with a non-prescription concoction to paint on my afflicted toes, and will re-visit the podiatrist in September?

[lankisterguy Volunteer]

Hi MsChief,

-

I have had toenail infections and athlete's foot infections for many years, prior to my CLL diagnosis. OTC treatments never worked for me.

-

My dermatologist prescribed Penlac webmd.com/drugs/2/drug-1804... which is very effective at eliminating the problem, but it takes at least 6 months of regular application for the nail to grow out to normal appearance.

-

I did have a brief bout of "ground glass opacity" appear on a CT Scan while I was in a trial with Idelalisib / Zydelig and we believe it was from Pneumocystis - the lung fungus,

en.wikipedia.org/wiki/Pneum...

which was likely allowed to develop by some poorly understood immune suppression effect of the treatment.

-

Len

[MsChief in reply to lankisterguy]

Thank you, Len - yes I am concerned about the systemic effects of fungal infections too. I do feat that prescription medication side effects can be worse than the disease. The People’s Pharmacy here in the U.S. recommends a slew of topical therapy including Vick’s Vaporub, amber listerine. mixed 50/50 with white vinegar, apple cider vinegar soaks and more. I have also used neosporin - still working on it. Best thing is wear open toe shoes or things to allow toes access to the air. Another thing is to file thick nails regularly. I would like to hear from anyone else dealing this this orobkem while treating cll or other auto-immune diseases. MsChief.

[Alex830]

Had issues with fungus toenails. Surprisingly pure tree tee oil worked for me. Took about a month to see improvement.

[Mamayoda]

When I was on ibrutinib I had terrible problems with my fingernails and eventually my toenails. I thought I had nail fungus until my new dermatologist sent a toenail clipping to a lab to determine that was NOT the case, just bruising. In hindsight I think I just had severely weak and brittle nails that looked like fungus. I eventually ended up with an in grown toenail and had to have it surgically taken care of. A year ago I switched to calquence and my finger nail issue all around has cleared up. Good luck!

[MsChief in reply to Mamayoda]

Thank you Mamayoda. I will investigate calquence. It would be a great relief if fungus was not the case! MsChief.

[craterlake in reply to MsChief]

I had some toenail fungus and had to take 60 mg of prednisone per day for one month to increase my red blood cells before i started taking calquence ... during the month i was on prednisone my feet and ankles swelled up about 1/2 inch allover and my toe nail fungus went wild completely covering my toenails ... that was 6 months ago and NOTHING i have done topically helps .thanks for asking about this problem MsChief it looks like we will both benefit from the answers you are getting from the people on this wonderful forum.......the calquence is working great for my CLL with very little side effects ..... please keep us up to date on your success with killing the fungus . blessings , james

[AnneHill in reply to Mamayoda]

I have ingrowing toenails. I have to moisturise the skin around them to enable me to get a nail file under and file the nail that is cutting in. I use Daktarin foot spray to stop athletes foot that keeps recurring. Im taking Biotin again and my nails are improving, Anne uk

[MsChief in reply to AnneHill]

Thank you Anne - I very much appreciate you sharing your treatments with us. I will investigate Daktarin although I have never had athlete’s foot - someone talked about Biotin 2.5mg - I will see my oncologist next week. I just started Magnesium citrate 250 mg for leg cramps - have to be careful as it can cause diarrhea so take at bedtime with levothyroxine. Life with cll is a delicate dance to be sure. MsChief 🥴

[AussieNeil Partner Administrator in reply to MsChief]

A clinical trial nurse put me onto topical magnesium cream, which stops cramps within minutes after application. I didn't need it long, as within a couple of months of starting treatment, I no longer experienced painful leg cramps, which were usually in my calves.

Neil

[PokeyPig in reply to Mamayoda]

I just started taking Calquence a little over a week ago and have been having terrible headaches. My brother suggested drinking coffee which helped tremendously but was wondering if anything else helped, as I don’t particularly like drinking coffee at night with my second dose of calquence… it causes me to be and down during the night peeing.

[AussieNeil Partner Administrator in reply to PokeyPig]

Try acetaminophen/Tylenol/paracetamol/APAP. You can even buy it combined with caffeine.

Neil

[Mamayoda in reply to PokeyPig]

I also had terrible headaches those first two weeks- I even had to stay home from work a few days. Thankfully, they totally went away after those initial few weeks. Just hold on. I did take Tylenol, but was told not to take too often. It helped a little, but not much. Good luck!

[PokeyPig in reply to Mamayoda]

Thanks so much Mamayoda…good to know the headaches won’t last forever. I’m holding on!

[craterlake in reply to PokeyPig]

I drank the coffee warm , very strong fresh brewed by my dear wife and black in the morning for the headaches and did not need anything at night as long as i drank lots of water during the day .. as others have said after a few weeks i no longer have the headaches and no longer drink any coffee .thank God i am now doing great on the calquence ..... blessings , james

[PokeyPig in reply to craterlake]

Thanks Craterlake. I have not been drinking the water I probably need. I’m definitely gonna do better.

[totara]

I have had toenail fungus for over twenty years caused by physical damage by dropping tools or bricks on them. Cured by laser treatment directed at the site. I have had CLL for over four years and been on ibrutinb for eighteen months. Fungus reappeared on the right big toe so I had laser treatment again in February. It was growing out but unfortunately I dropped a pair of secateurs on the same toe a month ago , causing blood under the clear part and reappearance of the fungus. Seeing podiatrist next month for a second laser treatment. Be interesting to see what happens. Luckily the fungus is now restricted to this toe now.

[Tortola2019 in reply to totara]

I’d like to try laser treatment for toenail fungus. Anybody else had success?

[Feldman in reply to totara]

Totara was there any pain or side effects from the lazar treatment ?

[totara in reply to Feldman]

Not much pain, only slight burning feeling briefly on one part of big toe and no side effects.

[Feldman in reply to totara]

Thanks! Good to know.

[blowinginthewind]

Yes, had this problem. My podiatrist told me drop a drop or two of neat tea tree oil on the affected nail twice daily for at least 6 months. It MUST be neat oil - I got mine from Boots but I don't know if you are in UK.

It worked very well, fungus now gone and not come back. Mine was caused by leaving nail polish on toes for too long.

I hope you get rid of your fungus.

Liz

PS, I am stil W&W.

[MsChief in reply to blowinginthewind]

Thank you so much. I am in the U.S. Will pick up the tea tree oil and try it. Are you on a btk inhibitor?

[blowinginthewind in reply to MsChief]

Hi, I am not any BTK, but I am on meds for other conditions, and my podiatrist suggested that tea tree oil was better than the things GP might prescribe, but probably wouldn't because they are so expensive. However, she said it must be the pure oil, not something else with tea tree in it. And it is important to use it twice a day every day. Good luck

Liz

[MsChief in reply to blowinginthewind]

OK thank you - your situation is different - you are in w&w -and used nail polish - I am on Ibrutinib - did not use nail polish. However I just got tea tree oil and will try it. Thank you. All best, MsChief.

[Feldman]

I also recently was diagnosed with toenail fungus on my big toe nail while on a low dose imbruvica. The podiatrist stated that the best solution would be lazar treatment which is not covered by insurance. He would not give me the oral medication and stated that topicals usually don’t always work. When Covid dies down in my area I would consider the lazar. For now I’m living with it but I would consider trying the neat tea tree oil as others have had success with it. Please Let us know if you find a successful solution.

[Lenny123]

Fungal nail infections take more time to treat, better results if used for long after nail appears normal. and early in disease course.Suggest topical antifungal, nail polish. combined with anti fungal ointment. Also sterilizing nail cutting equipment. really good results from laser treatment which some podiatrists do.

some of this is not covered by insurance, but worth it, in my opinion.

[Sprietgemeente]

Tried several over the counter meds to no avail. Was told to put Vicks on my toenails at night with a sock over it. The fungus disappeared within a week.It worked for me, so maybe it is worth a try. Good luck !

[Vlaminck]

Just going to put this out there for others to consider or reject, but to perhaps look up: Sometimes I drink a glass of water with a small about of apple cider vinegar highly diluted so not unpleasant. Not harmful and I think I have read it can help v. fungi. Berberine is a supplement that allegedly does so also. Just FWIW.

[MsChief in reply to Vlaminck]

Yes thank you - I have heard of people doing that too - I remember trying that years ago .(Soaking in apple cider vinegar with a little dish soap helps - but I’m not doing it enough. I expect to try the amber Listerine 50/50 solution with white vinegar as soon as I can pick some up. 🙀 MsChief

[DawnRedwood]

I wasn't aware that Imbruvica can cause fungal infections. But I do take Biotin every day for my hair and nails.

[Analeese]

I had toenail fungus for years. No matter what treatment I used it came back. Before I started on O and V my Dr. started me on acyclovir, 400 mg daily. My fungus cleared up. So far no more problems. I do know how serious it can be if it travels to your lungs.

[Sepsur]

Was on an anti fungal but then started treatment and told ibrutinib didn’t mix with the prescribed anti fungal - finished treatment end of Jan, now going to tackle dodgy nails & wart on knee 😊

[mrsjsmith in reply to Sepsur]

There are several anti fungals and Terbinanfine isn’t contra with Ibrutinib. I used successfully to rid my fungal toenail problem.

Colette

[SofiaDeo in reply to Sepsur]

You can use topicals, it's the oral meds that have contraindications.

[Sepsur in reply to SofiaDeo]

I think I have a special medical dyslexia because I can never remember the names of any meds 😊 - mine was oral & a cream - couldn’t take either

[SofiaDeo in reply to Sepsur]

Reducing the risk of absorbing an anti fungal cream applied over a large part of the body is reasonable. For toenails specifically, IMO I think avoiding topicals is unnecessary *for me* and in general. But your doc likely has reasons for wanting you, specifically, to not add any other meds into the mix.

[Northland]

What a great resource this site is. I'm 62 with CLL and on Ibrutinib for 2 years with great results overall but also have toe nail fungus now. I'm waiting back to hear from my primary care provider but will start with the tea tree oil or Vicks now.

[SofiaDeo in reply to Northland]

Some people need to wear socks that wick moisture, and breathable shoes, especially in damp climates. As well as clean their feet/exfoliate and scrub nails (gently). Keeping the area clean & dry, removing dead skin containing fungus, is #1 . If you use a nail brush to wash your feet, disinfect that. Fresh washcloth every time, wash the used cloth in hottest water you can. If your feet sweat a lot, I would consider cleaning the insides of your shoes and Not wearing the same pair daily. Swap them out so they can dry in between wearings.

[MsChief in reply to SofiaDeo]

Yup - fortunately most of us know all that. Thank you for the reminder.🥴

[janvog]

For toenails only: A dermatologist mentioned that a mix of Listerine and organic vinegar applied to toenails might work. With a dropper I apply some on nails twice a day. It seems to protect the uninfected toe nails and limit the fungus on the infected. Baking soda used as powder may protect the toes and spaces, maybe...

[MsChief in reply to janvog]

Thank you - excellent idea - I try that too. Ms chief.

[Northland]

The pharmacist that dispenses my Imbruvica told me 70% of people on the medication get toenail fungus. My doctor's nurse who also works in nursing homes and sees a lot if toenail fungus told me that nothing but the prescription Jublia medication works consistently well. I'm now applying Jublia every night.