Sulodexide Possibly Benefits Chronic Tinnitus

After reviewing Sulodexide and its potential side effects in detail, I decided to give it a try.

I've been taking it for about a week. My dosage is 60 mg per day, which makes it a little higher than that used in the study. On day 3-4 I've had some pain in the hip and upper leg area. Other than that I couldn't notice any adverse effects.

So far I can't really say anything about its effects on my tinnitus. The cost was €50 for a 45-day treatment. I'll post again in a couple of weeks or after finishing the 45 days.

 

Why is it so quiet on this thread? There are multiple independent studies with positive outcomes. Maybe we have gold in hour hands...! Unfortunately it's not available in my country. Maybe I can buy it somewhere!

Sulodexide Monotherapy in Chronic Idiopathic Subjective Tinnitus: A Randomized Controlled Trial

Medical and surgical treatments for tinnitus: the efficacy of combined treatment with sulodexide and melatonin

Treatment of central and sensorineural tinnitus with orally administered Melatonin and Sulodexide: personal experience from a randomized controlled study

 

This indeed is very interesting!

From: Treatment of central and sensorineural tinnitus
with orally administered Melatonin and Sulodexide:
personal experience from a randomized controlled
study
(https://www.ncbi.nlm.nih.gov/pubmed/20111618)

"In Group A, the THI and acufenometry, at the end of the treatment period, showed an improvement. The initial THI mean was 41.1 (SD 21.9) and the final THI mean was 36.5 (SD 20.8); the initial acufenometry mean was 44.1 (SD 20.2) and the final acufenometry mean was 36.7 (SD 20.5). The differences between these mean values were statistically significant."

From: Textbook of Tinnitus
(https://books.google.se/books?id=YS...BLkQ6AEIYDAJ#v=onepage&q=acufenometry&f=false)

"Acufenometry is the technique used to determine the frequency range (pitch) of tinnitus, its subjective intensity (loudness), the ability of sounds to mask the tinnitus of an individual person, and the residual inhibition of tinnitus."


That means that the improvement is not only in THI scores but the tinnitus also seems to have been perceived as less loud.

What's even more interesting is that the scores were stable in a follow-up 40 days after completion of the study, meaning that the results could be permanent even after the participants stopped taking the drug combination.




I am going to speak to my GP about this for sure!

 

None of these studies target the actual volume of the tinnitus. The outcome measures are based on the typical THQ-type of questionnaires.

Treatments that target the emotional response to tinnitus are actually available already (TRT, CBT, etc).

It's good to have another option (especially a pharmaceutical one), but I wouldn't say it's "gold in our hands". The gold would have to be something that actually lowers the tinnitus volume, in my opinion.

 

Yes they do target the actual volume of the tinnitus (see my post above yours). They also used acufenometry in their measurements.

 

Correct! I missed that! At least one of the studies does indeed cover that measured outcome and it does look good. I need to put this on my radar.

 

I bought three boxes of Aterina in Spain. Aterina is the brand name of sulodexide as its sold in Spain and you can get it without a prescription. It cost me about 45 €. I took 30g 2x per day. My dose was somewhat higher than the dose in one of the studies. I stayed on that dose for about 45 days.

It didn't have any effects on my tinnitus. I didn't and don't notice any changes. I also didn't notice any longer adverse effects. On day 3 and 4 I had some pain in my hip area, but it went away after a day. Other than that no noticeable side effects.

I did the THI questionnaire 3-4 times both before and during my treatment with Aterina. My THI score jumped around a lot. In fact it was also about 7-10 points lower during taking Aterina than before. However, I remember the first time I did the THI, I wasn't feeling very good on that particular day so that may have contributed to a higher THI score.

 

You would have to take it with melatonin, as they did in the studies. Did you do that?

 

I am going back to Chiang Mai Thailand in a few weeks.

I will be there for 3 months. Sulodexide is available and apparently manufactured in Bangkok.

If I am unable to purchase without prescription I am going to be armed with copies of the various reports and find a Thai doctor who will do it. The Melatonin I will bring with me from Canada.

I fully realize that it could very well not work... but seems worth a try while I am there.

I am also going to try a massage specialist who has apparently worked with tinnitus in Chiang Mai.

Nothing ventured, nothing gained lol. I will certainly update, especially if I have some good news!

 

Has anyone tried Sulodexide? If so, what was your experience?

I am considering trying it.

 

Is Sulodexide available in the UK?

I am surprised none of the doctors I consulted in the UK mentioned this. Is this a medication for neuropathic pain?

 

I don't know buddy.

 

Sulodexide has been used clinically for the prophylaxis and treatment of vascular diseases with increased risk of thrombosis, including intermittent claudication, peripheral arterial occlusive disease and post-myocardial infarction. Also investigated in the treatment of diabetic kidney disease and diabetic neuropathy. New anti-inflammatory properties have also extended its use in venous disease.

It also has been studied for the treatment of tinnitus.

https://clinicaltrials.gov/ct2/show/NCT02737670​

Not sure if anybody on Tinnitus Talk has tried it with positive results?

 

No I didn't. I didn't read the article properly and didn't notice that you had to take it with melatonin... hahaha. My t got worse a couple of weeks ago and I'm considering trying that again. Do any of you live in Spain by chance? Sulodexide is only sold in Spain so I'd need to find someone who could buy and send it to me...

 

Bump.

 

Yea, so where are things with this drug? Anyone else have any experiences to report? Worth trying?

 

What’s the story here?

 

There was a post today saying this:

"Sulodexide is currently “stuck” between phase 2 and phase 3 clinical trials.

And nothing has happened for the last three years. Its advancement toward a potential approval for use in chronic tinnitus has been frozen.

But unlike other promising treatments that seem to mysteriously “vanish”... and which receive a lot of attention and fanfare... only to “ghost” the tinnitus community without explanation...

The reason sulodexide “ghosted” actually has nothing to do with a clinical trial failure, retraction of results, some scary side effect that was later discovered, patent issues, lawsuits... nor does it have anything to do with some Big Pharma conspiracy to withhold a possible tinnitus treatment because it’s not profitable enough.

The reality of the situation is much more complex. But also simple to explain:

The geopolitical situation in the country where sulodexide was being studied and where the clinical trials took place (and conceivably, would have continued to take place) is not able to support its further advancement into phase 3 at this time.

I am going to respect the privacy of the individuals I contacted while investigating the situation here...

But that’s the situation."​

 

Anticoagulant Sulodexide Therapy for Tinnitus

 

Interesting. So:

A: What country is locking this up?

B: What do we have to do to get the drug? I see it can be acquired.

A quick Google search shows to mix it with Melatonin to help tinnitus. Someone help me get a source, I’ll try it.

 

I would suggest someone do the work and contact UT. Beirut is going to be a no-go.

 

It seems Sulodexide is already available on the market, it should be possible to use it off label, we just need to find out relevant dosing.

 

Google search: buy Sulodexide

 

It may be a wild and borderline theory, but what if big pharma companies are sabotaging these drugs and trials because these compounds all have expired patents on them? Who wants a cheap a easily produced generic drug that may work? Not the Big Pharma for sure...

 

Not likely.

 

I was hoping for a purchase method that was a little less... Russian.

 

I had an appointment with an ENT on the phone early on into my tinnitus, I believe it was February. He was useless and gave me no info other than I can stay on Mometasone indefinitely if I wanted to and he was taking it for the last 20 years. He told me he was retiring in a week so my follow up from my hearing test would be with another ENT anyway or my family physician.

I didn’t know too much back then (still don’t) so I asked the usual, “is there any treatment at all anywhere in the world?” He told me that he had a patient come in a couple years ago from the Middle East and asked him to fill a script for a tinnitus medication. He was unable to do so because it’s not approved in Canada and he had no idea what it even was. He told me he was skeptical it worked at all but the patient swore up and down that it was legit, reduced his tinnitus by half and commonly prescribed back home.

I didn’t think much about it at all. I figured it was Ginkgo biloba or something like that. In light of reading this article I’m inclined to believe this was it.

 

Just because things don't work out the way we hoped doesn't mean some nasty unfeeling entity has to have conspired to deny us. It seems society has become sort of stunted and we too easily bond over these sorts of easy explanations and not enough people are willing to push-back on them.

 

We should try these drugs if there is any hope they can help.

 

Sulodexide, aka Vessel Due, seems to be a common prescription drug. It costs about $30 for 50 pills. You can ask your doctor to prescribe it. If your doctor refuses, you can ask some vet for prescription in which case you will have to pay for the drug.

Well, at least that's how it is in my country.