High (?) Ferritin – Exjade – Toenail fungus

[Lydia]

Mom’s ferritin is 1200. Doc wants to start her on Exjade but hasn’t checked her iron level in over a year (We’re currently looking for another hemo!) Heard to treat overload when between 1000 and 2000 – big hap in range – at what level should it be treated.

She’s also taking Lamisil for toenail fungus. Lit says Lamisil affects the liver – could this result in inaccurate iron level?

Also read inflammation/infection could falsely raise ferrtin test. Could toenail fungus itself raise her iron levels?

Although Exjade has been approved, isn’t is still in clinical trials to perfect dosage. Did get printout from Novaris.

We don’t want her to start treatment with just one high ferritin count. What further tests should my mother have to confirm she definitely has overload? Read MRI of liver and SQUID test – is this correct.

Have new hemo appt. in couple weeks. Hope he’s better to help her or refer to another. Finally convinced her she needs new hemo.

Thanks very much for any help/advice. We are starting to panic here.

[Suzanne]

Is she getting frequent transfusions? If not it may go down by itself. I think I remember correctly that mine was up to 2000 but they planned to watch it for at least a year to see if it would slowly come down on its own. last time it was checked it was coming down but I no longer need transfusions so it is not likely to increase. That makes a big difference. I also heard someplace -probably from Neil that it takes something like 14 years of it being high to do damage so don’t panic yet. Whether the other things can cause a high reading etc-don’t know those answers. Someone will.

[patti]

Hi,

Suzanne was right. Neil was telling us it takes 15yrs for damage to organs to happen from iron overload. My MIL is close to 2000 and we’ve already told the doctor we see no need to treat her overload. She’s 75. The likelihood she’ll live to be 90 is pretty slim so why make her take another medication? If your mom’s much younger it might still be worth waiting considering how long it takes for damage to happen. It seems like when it comes to iron overload that the risks outweigh the benefits by a long ways.

I can’t answer your other questions but I do think you’re right to ask them. If those things can raise ferritin then you’d be wiser to have more tests done. No drug is without it’s downside. Always better to make sure you have to take it before you do.

Patti

[Neil]

Hi Lydia,
My mom was in assisted living. Found she had toenail fungus and lots of neglected toenails.
Found there were several independent operations where someone would visit her on a schedule to trim her nails, wash her feet and generally treat her condition. It really helped.

[lynette]

Lydia,
Hi! Lamisil can cause liver toxicity. Although rare, there are documented cases. In addition, Lamisil can decrease WBCs. Specifically, it can cause neutropenia. It can also decrease platelets. these side effects are noted after many doses of the medication. I have not found that it affects ferritin levels. Toe-nail fungus should not raise ferritin . Don’t panic. It sounds like your moving in the right direction by finding a new doc!!
Lynette

[Lydia]

Thanks for replys.

Patti, when you said “when it comes to iron overload it seems the risks outweigh the benefits by a longways” do you mean that treating the overload is very risky?

[patti]

Hi Lydia,

I think using the desferal (which was the only thing available prior to exjade) had a hefty set of risks. I don’t know about the exjade. But even with that, anytime you put a drug into the body that is foreign it’s going to do something unnatural to the body. In the case of chelating agents (desferal and exjade), these drugs flush iron out of the body via the kidneys. So you are putting a heavy strain on the kidneys. I guess one has to decide if that extra strain is worth it when it will take so many years for overload to cause damage. Does that make sense?

As a side note – I love your name. It was one of the girls names I had wanted for my kids.

Take care.

patti

[Frankie]

My Lamisil story is kind of funny. It cured my one toenail of the fungus and then 6 months later it appeared on the other foot!!!!

Frankie

[Lydia]

Frankie, mom’s doc said to be careful when putting her socks back on. Make sure the sock that was on the right foot goes back the right foot, left on left. She wears same socks a couple of days during winter since her feet don’t sweat now. Hers hasn’t traveled to the other foot yet. Wonder if it can be transferred from fungus touching sheets. Just in case – she wears socks to bed. This summer will present a problem for the socks-to-bed ritual!

[Author]

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