Has anyone heard of this? Ambroxol HCL is used around the world as a decongestant. It is not approved by the FDA. My husband is constantly searching for possible treatments and recently found this one. Any thoughts?
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Hi conniebryne, how nice your husband is helping in the research!! I will ask my pain management doctor at UCSD about this next time I see him.
Hi Jewels,
I would love to hear what your doc has to say. I’m about to write to my rheumatologist and my pain doc but I don’t really expect a response from either. I think that some doctors fear saying something positive about a non-fda approved drug. Also, not all doctors want to spend the time looking at research. They are certainly not being compensated for that. Sometimes the best reply you can hope for is an acknowledgement that they are not familiar with it. That is certainly better than no response and maybe we can plant a seed.
Thanks and good luck,
Connie
Thanks Connie for sharing this - I’ve never heard of Ambroxol, but there seem to be a few papers on it. If I get the opportunity I might ask my derm about it. Since I have refractory facial pain I was intrigued that there was a paper this year supporting its use in trigeminal neuralgia.
There’s a quote in one of Oaklander’s CRPS papers that I really like - “You have to have the imagination to look for new
phenomena!” (source, one of her colleagues) I hope that doctors can be open-minded about input from patients who are informed about their rare diseases. I think the best doctors are, and realize that the future of medicine is collaboration between patient (groups) and MD’s.
Take care
Hi standing_cat, happy to share. I would love to hear what your derm has to say pro or con. All information is valuable.
All the best.
Well, I decided to take a risk and try topical ambroxol. I am not suggesting that anyone else do this but like many of us who can’t find medication that works or is even marginally effective without causing horrible side effects I took a shot. Ambroxol is not available in the US but I was able to get my hands on some. It came in pill form. I used the ratios of Ambroxol to compounding cream that I saw in the trials. I feel like a mad chemist. I applied it to my feet (source of my EM). The only thing that I noticed was that my sinuses became clear. I tried different concentrations on successive days but that was the only benefit. No pain relief. So, at least for me, this is another one that “bites the dust”. The next thing that I am looking at is a topical from WINSANTOR called WST-057. It’s supposed to be in some clinical trials this year. It uses a drug called Pirenzepine. Again, not available in the US. They are focused more on diabetic neuropathy but I’m hoping that any improvement in small fiber neuropathy will help those of us with EM. Has anyone heard of this drug and/or these trials?
Thanks,
Connie