Treating Retinitis Pigmentosa with TUDCA

Written By: ingridricks - May• 30•13

I first read about TUDCA (Tauroursodeoxycholic Acid) three years ago and was so excited np_tudca_largeabout it’s potential to preserve photoreceptor cells in people with RP that I immediately made an appointment with a Traditional Chinese Medicine (TCM) practitioner and asked if I could buy it from her. I figured that since TUDCA is a synthetic form of bear bile–which has been used for thousands of years in TCM to treat blindness–she would know all about it.

 I was wrong.  Because TUDCA is a synthetic version of the real thing, she had no idea what I was talking about. After conducting a few Internet searches and striking out, I gave up on TUDCA and eventually forgot about it.

Then, a few weeks ago, I saw a post from Dr. Andy Rosenfarb in an RP treatment and research group on Facebook.  In answer to a question someone had posted about effective supplements for RP, he listed TUDCA as part of his standard treatment protocol.

I immediately emailed him to find out his thoughts on TUDCA and where I could purchase it. Acoording to Dr. Rosenfarb, TUDCA is a strong antioxidant that has been shown to protect nerves in the brain and the eyes. It also improves liver function–which is directly related to eye health. He says he uses it as a first line of defense for RP patients and notes that sixty percent of his patients who use TUDCA have experienced improved night  and peripheral vision.

Since then, I’ve researched everything I can find about TUDCA and RP and have come across some promising information. Researchers at the University of Iowa have tested TUDCA on lab mice and found that it repeatedly blocked photoreceptor cell death in two different mouse models of RP. Based on these positive results, I’ve read that the Foundation Fighting Blindness plans to fund a clinical trial sometime this year — though I can’t find any specific details. More research needs to be done and it could be that TUDCA is only effective for certain types of RP. But because there seems to be virtually no negative side effects, it sounds like TUDCA is  worth trying.

 To read a report on Foundation Fighting Blindness Web Site, click here

To read the University of Iowa study, click here  

 

Where to Purchase TUDCA

For the past couple of weeks, I’ve been using TUDCA in powder form that I purchased through Amazon because there was no pill form available. But Dr. Rosenfarb just announced that he now has access to TUDCA in pill form which can be ordered directly through his clinic www.acupuncturehealth.net 

There is also a company called Nutraplanet that sells TUDCA in pill form but their web site currently says that they are out of stock.

Dosage

Dr. Rosenfarb recommends a daily dose of 500 miligrams, adjusted by weight for kids.

Side Effects

I’ve been mixing 500 miligrams of TUDCA into my daily green juice and haven’t experienced any side effects, though I’ve heard from a couple of people who say TUDCA  (at least in powder form)has made them sick to their stomach. Dr. Rosenfarb reports that a few patients have experienced loose or burning stools, but says that the issue went away when dosage was reduced.

How Long?

If you are interested in trying TUDCA, Dr. Rosenfarb recommends sticking with it for six to twelve months to determine if it is beneficial for you. He says that it’s slow-acting and can take that long to see results.

 

On a separate note, Dr. Rosenfarb has recently put together a Retinitis Pigmentosa and Acupuncture Treatment Guide that has some great information. To check it out, CLICK HERE.

 

 

 

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17 Comments

  1. Alysa S. says:

    It is so awesome of you to share this information! Great and generous reporting. You mention that TUDCA is also known for regenerating brain cells. I wonder if studies have been done on its effect on people who are at risk for, or showing early signs of, Alzheimer’s, dementia, and other degenerative brain conditions? I’m going to look that up. Thanks again for this information, and, as always, best wishes.

    • ingridricks says:

      Alysa — I think it works on all brain diseases and I think it has been studied for those you’ve mentioned. I would definitely look into it if you have interest in those areas. And thank you, as always, for your amazing friendship and support.

  2. Marie-Josée Idiart says:

    Hi Ingrid,

    Thanks again for a great informations. How is your vision? Do you see any progress?
    Yes I am planning to try Tudca but I was afraid to buy it online because you never the quality of the product. Do you know how much Dr Rosenfarb is selling is product?

  3. Marie-Josée Idiart says:

    Sorry me again, if i autosomal dominant, do you know if TUDCA works for that type of RP or only for the autosomal recessif?

    • ingridricks says:

      Marie-Josee,

      I don’t know what forms of RP it works for. I’m just trying it because it sounds very promising and there seems to be no downside to it. Plus I figure my liver can use all the support it can get.

  4. Efi P. says:

    Hello Ingrid and thank you for the research! My doctor has given me no hope and I am looking for alternative treatments as well.

    Have you tried microacupunture or microstimulation? If yes, what was your experience with each? I am legally blind with RP.

    Thanks!

    • ingridricks says:

      Thanks for connecting. First of all – don’t list to your doctors. There is plenty you can do to help your eyesight. And I’ve discovered that it starts with your diet (seriously look into green juicing and a fresh vegetable and fruit based diet – it helps reduce inflammation and increases blood flow..which is essential for your eyes). I would also do eye exercises and acupuncture. I’ll put together a resource list soon for people.

      I have tried microcurrent stimulation and I don’t know that it did much for me – though it might have helped to preserve my central vision. I did it for four years and then stopped a few months ago because my machine broke. I’ve not tried micro-acucpuncture — though I hear good things. I’ve been doing regular acupuncture and it has helped a little. Hope this helps. If you read through my past blog posts – you can find out a lot of info about all of this. Best Ingrid

  5. […] My TUDCA capsules arrived earlier this week and I’ve been downing them each morning with my green juice. It’s definitely a lot more enjoyable taking TUDCA this way because I wasn’t crazy about the taste of the powder, even buried in my kale, celery and cucumber juice. For more info on TUDCA, click here. […]

  6. Cary Moss says:

    Hey Ingrid,
    I was reading through your blog and really encouraged by the alternatives. From what I can tell you have been taking Tudca since June. Are you noticing any improvements? The orange algae sounds interesting hope that woks and I ll have to save up for that one.

    Thanks
    Cary

    • ingridricks says:

      Hi Cary,

      I’m actually putting up a post on this subject tomorrow. The short answer is that my eyesight has remained steady (maybe slight improvement) but nothing significant. I know the algae only works for about 40 percent of RP cases and mine clearly isn’t one. TUDCA is longer term – so have to be on it for about a year. Best – Ingrid

  7. Claire says:

    Hello Ingrid,
    Have you seen any more improvement ? I have ordered Tudca for my husband who has Rp, he is a Simplex case, and to be honest, when he drinks red bull with some alcohol, he alwats tells me he sees much better, so now im confused if its really the Taurine in the red bull or not! Will be purchasing taurine till Tudca arrives to give it a try.. well done with such a great informative site!

    • ingridricks says:

      Hi Claire,

      That’s interesting regarding red bull and alcohol. I didn’t know Red Bull had Taurine in it. My eyes have held steady with the TUDCA and algae,though I’ve not seen significant improvement. However,TUDCA makes a lot of sense to me because I know liver detoxification is key for this disease and since it’s affordable, I think it’s definitely worthwhile. Dr.Rosenfarb, who uses it for his patients, advises taking it for a year because he says from a results perspective, it’s very slow moving. Wishing your husband all the best.

  8. Robin says:

    Hello Ingrid,
    After researching herbs for RP online I came across your inspiring article. I have RP and still have my central vision that I would love to preserve. I am going to look into purchasing TUDCA. And continue drinking my green juice every morning. PS I was amazed at your results with the acupuncture I would have love to feel that slight improvement in my eyes even though for a short while.:) Maybe I’ll find someone as experienced as Dr. Rosenfarb in my city New Orleans, LA.
    Also is the herbal concogition thats was made up for you by your other doctor for sale?
    Thanks for your inspired vision…

    • ingridricks says:

      Thanks for connecting, Robin. The good news is that Dr. Rosenfarb is starting an online certification program to train acupuncturists everywhere in his treatment protocol. Of course..you have to find that acupuncturist who is committed…but I think it will come.

      I’m seeing Rosey, my Seattle acupuncturist today, and will ask her about making her herbs available for out of state purchase. Best – Ingrid

  9. Javed says:

    Hello Ingrid

    I am thinking to order this TUDCA for myself. Could you please tell me about your experience in using this medicine? Also, do you recommend. Acupuncture as a treatment for RP? What was your progress after having the acupuncture? I will really appreciate your reply to my email address.

    Thanks

    • ingridricks says:

      Hi Javed — I haven’t really noticed that TUDCA has improved my eyesight…but I look at it as something that can help protect the vision I have left. I’ve written extensive blog posts about my experiences with RP. If you scroll down through previous blog posts, you’ll be able to read about my experiences. it’s definitely been helpful for me. I also invite you to join the Determined to See group on Facebook. It’s a new group and we discuss acupuncture and other whole body health treatments there. Best- Ingrid

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