What You Say To Your Doctor If You Want To Trial Clarithromycin

10
by on March 15, 2013 at 1:37 am

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

Relevant Links:

  1. http://en.wikipedia.org/wiki/Idiopathic_hypersomnia – highlight the section on GABA treatments, especially Clarithromycin. Highlight the section on Causes too.
  2. http://www.clinicaltrials.gov/ct2/show/NCT01146600 – Clarithromycin
  3. http://stm.sciencemag.org/content/4/161/161ra151.short – Flumazenil
  4. Clarithromycin Cardiac Risks for Idiopathic Hypersomnia

This post is also available in: French

You can skip to the end and leave a response. Pinging is currently not allowed.

10 Comments

  • David Rye

    01/04/2013

    I applaud your passion and efforts Would love to Skype or otherwise discuss how we might assist one another in increasing awareness and moving these compelling first observations forward!!

    D. Rye M.D., Ph.D.

  • ReidLB

    02/04/2013

    Thank you Dr. Rye for commenting and acknowledging the need for awareness. Lloyd has worked so hard to help all of us who suffer with IH by doing research, creating websites, and doing whatever he can to get the word out to the rest of the world. Seeing your interest in assisting in his plight, I’m sure, makes it much more rewarding than just hearing a thank you from us.

  • Camille Sergeant

    03/04/2013

    Dr Rye, I also wanted to add a heartfelt thank you for the work you and your colleagues are doing to shed light on the cause of IH. Thanks also to people like Lloyd who link, inform and support others with this disorder through the internet, there are now many of us in Australia and around the world who have been made aware of and are following your efforts with a great degree of interest, appreciation, and for the first time – hope – that the cause of this disorder will eventually be found, and an effective and safe treatment will be developed.

  • Theodora Dea (@NyctoDea)

    04/04/2013

    Omgosh Dr. Rye commented! Awesome! I want to start a fundraiser so many I can go down to Georgia and be tested and even treated with this drug. I am 17 and live in Nova Scotia Canada and it is hard to find a doctor that understands but now my GP finally does. Even had a psychiatrist who said hypersomnia in air quotations he acted like I full of it and I ended up leaving crying my eyes out in front of him. I fail to understand why someone who think an ex athlete chooses to sleep for so long and not even be walk anymore. Also got a big sleep hygiene and melatonin supplements lecture. :(

    • maoverland

      20/05/2013

      Before you go to Georgia, ask your GP for a course of the antibiotic Clarithromycin, as suggested in the posting. You’ll know in a few days if it works or not. My son, also 17, was put on the medication in January and he “woke up” after being asleep for much of the past five years. (And no, the energy bars his psychiatrist gave him did NOT work.) He now wakes at 7 each morning and is trying to catch up for the lost years. Our lives have been completely changed. One day I will find a way to thank Dr. Rye, and the doctors at Emory and the NIH.

  • Marianne E

    22/05/2013

    Just wanted to add my thanks to Dr. Rye. I have high hopes of a “cure” for this as I’ve spent my entire life living with the struggles with IH. I know what my limits are and miss out on some things, but I keep pushing to that threshold to enjoy as much as I can. I live for the day when my symptoms can really be controlled so I know what “everyone else” feels like and watch out world when I do, because I’ve done a lot even when I’m 99% drained all the time! =)

  • Nicole Taglione

    10/10/2013

    Hey guys,

    Just had a few questions to those of you who are more informed than I on the subject of clarithromycin and flumazenil. After exploring the different research articles and Facebook groups, I’m eager to talk to my doctor about the possibility of a clarithromycin trial. I am currently taking 400 mg of Provigil everyday, and have been regularly since February of this year after being diagnosed with Hypersomnia. While I did notice a significant difference, I still don’t feel as if I am living my life to its fullest potential. The days when I don’t take it, I’ll sleep for 16+ hours. And on the days I do take it, I seldom notice much of a difference in terms of my actual wakefulness.

    My question to you is, would I need to taper off of my Provigil before beginning any type of clarithromycin routine? And if I were to start, how long do the effects of the medication actually work? More specifically, do you simply do the 14 days (or two month trial, depending on the scenario) and then stop? Do the benefits of the clarithromycin only work through the duration of administration, or does it continue thereafter?

    As I stated before, I am very eager to speak to my doctor about some possible alternatives because already I am realizing the shortcomings of my current medication. And having been prescribed methylphenidate years ago when I was in high school, I am almost certain that stronger stimulants such as amphetamines won’t be the answer either. I just want to be prepared ahead of time before my visit so I can express the importance and seriousness of the situation. I have already read through the 16 page PDF on how to talk to your doctor about starting on clarithromycin, but I figured it wouldn’t hurt to ask for additional advice.

    Thank you for taking the time to read this,

    Nicole

    • Dean Jordheim

      08/02/2014

      Nicole, have you done anything with this yet?

  • Ann Kelsey Echegoyen

    21/02/2014

    3600 E. Hartson Ave.
    I can’t seem to find a blog or a comment that says whether anything they have taken or tried has actually helped.
    Has anyone found a way to take flumazenil? Clairithromycin?
    my life is essentially being wasted in sleep. I can plan for nothing. The stimulants I’ve tried, all, up through NuVigil, don’t help me.
    How about some overseas source? Maybe some other country produces flumazenil. HELP !

  • Tammy Magouirk

    25/02/2014

    My sleep specialist just told me about the new research with Clairithromycin from Emory. I only live 2 hours from Emory and would be happy to participate in trials. I am so tired of sleeping my life away.
    I have been on 30mg extended Adderall, then 2x10mg daily for over a year. Doesn’t really help.

Leave a Reply

Your email address will not be published. Required fields are marked *

Quick Links






Email Updates