Have you been reading some of the articles on the web about the benefits of Clarithromycin for people with Idiopathic Hypersomnia? The results are yet to be published but a clinical trial has been completed by Emory University and anecdotally there were very promising results. Clarithromycin does not represent a cure to Idiopathic Hypersomnia, but it does represent another treatment option that has the potential for significant improvement.
The question that keeps being repeated is: “What do I say to my doctor if I want to get a prescription to see how it works for me?”
And that is what this blog sets out to answer!
Before writing this blog I talked to a doctor and asked for their opinion. This is, in essence, what they said:
Here’s what I would say to my doctor to try to get Clarithromycin. If I’d had a patient say this to me, I would have given it a try.
I’d first educate your doctor that researchers at Emory University have discovered a possible mechanism of most IH cases, the GABA-A receptor hyperactivity. Print the clarithromycin trials from clinicaltrials.gov along with the Wikipedia page on idiopathic hypersomnia and give them to your doctor (links further down this blog article). You might highlight the most pertinent parts to help your time poor doctor digest it quickly.
Tell your doctor that Emory University has done 2 clinical trials of medication that reduce GABA-A receptor hyperactivity. The Flumazenil trial is done, published, and positive, but there’s no easy access to flumazenil. The Clarithromycin trial is done, with results pending. The results are good enough that all the Emory sleep doctors are routinely prescribing clarithromycin off-label for their patients, and some have been on the med for more than 2 years without serious complications.
AND you are absolutely dying now from the awfulness of this disease worsening, and you are desperate to try anything that might help.
It might also help to make the point that Clarithromycin is doubtfully more dangerous than stimulants, Xyrem, etc… It is also likely to help if you request permission to do a trial for 2 months. Putting a time limit on the trial will make it seem like a better idea to many doctors.
The dosage that they used in the Clinical Trials was:
- Starting Dosage: 1000mg daily (500mg at breakfast and 500mg at lunch)
- Medium Dosage: 1500mg daily (1000mg at breakfast and 500mg at lunch)
- Maximum Dosage: 2000mg daily (1000mg at breakfast and 1000mg at lunch)
Start on the Starting Dosage. If you tolerate the side effects and don’t feel amazing then a few weeks later you can increase to 1000 mg breakfast and 500 mg lunch. If you tolerate the side effects and don’t feel amazing, then a few weeks later, you might increase to 1000 mg breakfast and 1000 mg lunch (this is the max dose with safety data for treating infections).
Explain this to your doctor. Depending on how regularly you see your doctor you might ask that they prescribe the Medium or Maximum Dosage at first and allow you to handle your increase gradually. This means you won’t run out of tablets prior to your next doctors appointment if after a few weeks you increase from the Starting Dosage.
IMPORTANT! It is also super important that you take Probiotics as well. This will help prevent many of the potential side effects of using anti-biotics for an extended period of time. Generally it is recommended that you take a Probiotic twice a day – 2 hours after taking the anti-biotics. The information isn’t perfect when it comes to Probiotics but generally the ones kept in the fridge are likely to contain more helpful bacteria than the ones stored at room temperature.
In terms of monitoring it is primarily about tracking how you feel on the Clarithromycin. It might take a few days before you notice an effect so stay on the Starting Dosage for at least a week. In the medium term if this treatment works for you then you want to request your doctor checks your liver enzymes after 2 months of use, and then approximately every 6 months after that. This is because Clarithromycin can sometimes cause liver toxicity. The liver is one of the best organs at regenerating itself but it is important to track this level so you know if toxicity ever starts to occur.
Remember, it is about helping your doctor see the potential in this treatment for improving your quality of life. The better you can present this information to your doctor, the more likely they will feel comfortable supporting you in your request to trial Clarithromycin.
To make this easy for you we have prepared a sixteen page PDF that you can show your doctor. Email it to them, print it or take it on your phone/tablet. This should make things much, much easier. Click here to open the PDF in a new window:
» View everything you need in one easy PDF now
- http://en.wikipedia.org/wiki/Idiopathic_hypersomnia – highlight the section on GABA treatments, especially Clarithromycin. Highlight the section on Causes too.
- http://www.clinicaltrials.gov/ct2/show/NCT01146600 – Clarithromycin
- http://stm.sciencemag.org/content/4/161/161ra151.short – Flumazenil
This post is also available in: French
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