Clofazimine Experience?

[Hail2Pitt]

Hi all,

After a glorious one-year drug holiday, I am about to re-start therapy for M. Abscessus. One of the drugs my docs are going to try this time is Clofazimine. Has anyone on here ever taken it? I know it's a longshot, but I'm hoping someone has, and can perhaps share his/her experience.

I'm well aware that it causes skin discoloration, and I also know that some people develop gastrointestinal issues. But, I'm trying to understand what this really means for patients who have taken it. I totally trust my doctors, though I know they want me to take it, so I wouldn't be too surprised (and also wouldn't blame them) if they've downplayed the side effects a bit. And of course, if you google it, you can find all sorts of ridiculously terrible results. So, I'm hoping to get input from someone who has actually taken it.

Thanks!

 

[TonyaH]

My son (16) just started clofazamine for m. abscessus a week ago. He has been treated for NTM for the past 7 years and we are just now adding it in to the mix. So far I have not seen any side effects, but he did have a problem last week with mental confusion that we have chalked up to levaquin. He seems to be coming out of it, so I don't think the clofazamine is to blame.

 

[MichaelL]

I'm sorry you have to go back on abscessus treatment. I've been on Clofazimine for two and a half years now. I take 150 mg once a day. The skin discolouration for me looks like I'm very tan -- I often get compliments and questions about where I've been on vacation. I know some people end up red and blotchy, but that's not been the case for me. Unfortunately, the "tan" rubs off and stains things orange (e.g., clothing, towels, sheets, etc.). I've had to switch to dark coloured bed sheets after ruining a lighter set. I've also had problems with white cotton shirts getting stained. My doctor mentioned that he had a patient who had been off Clofazimine for two years and she still had the "tan," so it seems to be a drug that stays in your body for a very long time.

I have had more GI symptoms since going on Clofazimine. However, my GI specialist wasn't prepared to blame Clofazimine for the problems. I really have no way of knowing whether it's a side effect or aging with CF. My NTM specialist mentioned that since the body takes so long to clear the drug, I'd have to go off for quite a while (I think he said a couple months) before we could tell if the GI symptoms would clear up or not.

I haven't observed any other side effects from this drug. I would rate the side effects fairly low compared to some of the other medications I'm on.

Good luck with the new regimen -- I hope it works for you.

 

[TonyaH]

Michael...very interesting about staining. I know to expect skin discoloration, but was never told it 'rubs off'.... Thanks for the heads up!

 

[MichaelL]

I mentioned the "rub off" issue to my NTM specialist and he was not aware of that. I've been on the medication so long, I don't remember how long after starting it that my skin started to "tan" and/or when it started to rub off.

 

[ldevoti]

I know a number of people whose kids are on it and it hasn't caused any real issues for any of them, just the skin thing, and like others said, it hasn't been a bad skin color change, more of a tan.

 

[Hail2Pitt]

Thanks for the information, everyone! My doctors told me to expect to look kind of tan, so that's consistent with what you all are saying. Though, I'm curious - how careful do you need to be when it comes to sun exposure? They told me that any time in the sun increases the discoloration, so I should either avoid it or be very careful (use sunscreen, wear jeans and long sleeve shirts, etc.).

The rubbing off thing is interesting. They'd told me it will stain my sweat, so that will be weird when I'm at the gym - how noticeable is it? And, I didn't realize I would stain towels, sheets, etc. Thanks for the heads up!

 

[MichaelL]

I had melanoma a few years ago, so I'm very careful about sun exposure. I wear a hat if I'm going to be out for long and put on sunscreen. I also wear baseball shorts with the 3/4 length sleeves. They hide my PICC line and provide protection from the sun. I know a lot of the antibiotics we take do make us susceptible to sunburn. I can't really comment specifically about Clofazimine.

The colour rubbing off wouldn't be noticeable to others at the gym. After I wipe my face on the treadmill, I can see the orangish colour, but someone wouldn't see it from a distance. The clothing is more noticeable becausee it's exposed to your skin for a longer period of time. I do not wear white shirts anymore because I know they'll stain over time. The tags inside clothing also change colour over time, but no one on the street can see this.

 

[Hail2Pitt]

Thanks again for your replies, everyone! I just started the Clofazmine today. I'm now on a pretty potent regimen of Azithromycin, IV Cefoxitin, inhaled Amikacin and the Clofazimine. We'll see what happens!

 

[MichaelL]

Good luck with your treatment! I hope it's effective in treating your abscessus and that you're not on it too long. I'm three-and-a-half years in and not having great results.

I saw your other post about getting a port. I would be interested in hearing how that's working after a few months. I've been having problems with my PICCs lately and they're trying to convince me to get a port. I understand the benefits for someone who's on IVs for a few weeks and then off for months. However, I am skeptical of the benefits for someone who's accessed full time.

 

[Hail2Pitt]

MichaelL - I'll let you know about the port. For now, I'd advise you to stay skeptical! I'm not yet a fan of it at all - I'm still wishing I'd just gotten another Hickman catheter. If you're having trouble with PICCs, I'd certainly recommend for you to at least look into a tunneled catheter like a Hickman. I've had PICCs, and I definitely prefer the Hickman to them.

Maybe I'll start to like the port more over time as I get used to it (and begin taking advantage of deaccessing a few times a week to lift weights, swim, shower, etc.), but for now I'm still kind of angry about it...

 

[piggylu]

Hi, i have been on Clofaz for almost 9 months. The main things i notice on my end are the skin color change and i also notice that i get extremely dry skin from it. Any others get the dry skin??

 

[MichaelL]

piggylu -- my skin has also been very dry since I started Clofazimine. I started a bunch of meds at once, so I was never sure which drug caused it. I'm someone who has traditionally has had very oily skin, so this has been quite a change for me.

 

[Hail2Pitt]

My doctors told me that dry skin and gastrointestinal issues are the two most common side effects. So, you're not alone. I think I'm already noticing this - my skin is typically dry, especially in the winter. Right now my skin looks like it's January, not September!

 

[piggylu]

I totally agree!!!! I usually dont need much lotion etc, but since starting Clofaz, my skin is extremely dry and cracked and i havent found any product that restores moisture. I joke and say my legs feel like i am a reptile.

 

[donin]

Hall2Pitt,

I'm glad you were able to have year long drug holiday - that must have been wonderful, especially if you felt well the whole year.

My son (25) is flying from NY to Denver right now for his third visit to National Jewish to treat his M. abscessus. He has been treated with clofazimine from National Jewish as part of a clinical trial since September. I have never heard him complain about it and there is no skin discoloration and no GI complaints. The GI complaints come from the tygacil. He is also on aerosolized amikacin (and at times IV) for the M. abscessus. He has not had any of the potential neurological (hearing, dizziness) side effects (I probably just jinxed him by typing that).

I hope that you have good luck with the clofazimine.

 

[Hail2Pitt]

Hi all,

I've been on Abscessus therapy for about six months (clofazimine, IV cefoxitin, azithromycin, and inhaled amikacin), and had been doing well. Though, I've been having a side effect that I wanted to mention and ask about - elevated liver enzymes. Just a few weeks into my therapy, my enzymes went a little high, and my doctor has been monitoring them weekly ever since. They'd been very slowly trending higher until about a month ago when they shot up, and then last week they shot up even higher. My doctor stopped my cefoxitin thinking that was the likely culprit, but after a week, they're not any better (and are actually a tiny bit worse). I'm going to have an ultrasound tomorrow to try to help figure out what might be going on.

Though my doctor suspected the cefoxitin, a google search seems to indicate that clofazimine can rarely cause liver issues as well. Has anyone experienced any liver issues while on clofazimine, or heard of anyone who has?

Thanks!