Hidradenitis Suppurativa

[Scottie]

‌Found this:
https://www.drugs.com/pro/metvixia.html

This is one of the pro red lights used with Methylene Blue... It says 37 J/cm2 is appropriate intensity for treatment.

1 Joule is 1 W/s.

So, that would mean we need 37W of red LED light per 1 cm2 of skin. BUT, they also say in the study that typical treatment time is 8 minutes, or 480 seconds.

The link above also says to position the light 5-8cm from skin, which will give a patch of red light 8 x 18cm in size.

Thus, we have 8 x 18 = 144 cm2 (22 in2)

If treatment dose of light is 37 W/s/cm2, that means we would need:

144cm2 x 37 W/s/cm = 5328 W/s (for only 1s)

That's a LOT of LED power! But if the treatment time is 480 seconds, we divide that power to get:

5328 W/s -> 11.1W for 480 seconds of treatment

That's still quite a bit of power for a LED lamp. Typical GU10 50W halogen spot light bulb in LED format is ~5W.

The reason I'm calculating all of this is because I found and ordered a handheld 633nm LED light off Amazon, but they didn't specify power output.

Of course, if you reduce the distance between the light and the skin so that the patch covered in red light is 1/4 the size (about 36cm2 or 5in2), then the power output for 8 minutes of treatment is reduced to 2.775 W, which is far more reasonable for a handheld, battery-powered device. Or, you just increase treatment time with the light.

I'm assuming that LED input power is directly equal to the output power of the red light being generated, which is definitely not the case. But at least it gets us in the general ballpark - instead of just guessing.

Assuming I'm not talking smack here, then it seems an expensive medical-grade light is not required. The only requirement is that the LEDs produce 635nm red light. Even the medical-grade one above has a light wavelength tolerance of +/- 5%, which would be 603 - 666nm. This tells me that they are NOT using "high-precision" LEDs that are specially made... But they are making lots of money!

When our handheld unit arrives, I'm gonna do some calculations.

Note that you can buy 625nm 1.1W LEDs on Conrad.fr, but they're 12€ each. The 630nm variant is 0.20€ each, but they are only 0.04W each, so you'd need 277 of them to equal 11.1W.

Anyway, finally I'd like to note that I once used a simple red-tinted lightbulb along with a blue-tinted one to try to help treat acne on the back of my shoulders, and it seemed to help. And that was just a simple tinted-glass incandescent bulb!

So the results of this experiment will be interesting, esp. with the Methylene Blue and more precise wavelengths of red light.

 

[Scottie]

I'm assuming that LED input power is directly equal to the output power of the red light being generated, which is definitely not the case. But at least it gets us in the general ballpark - instead of just guessing.

Okay, Guess Reduction Mode activated:

So red LEDs are all typically 620nm to 645nm, and at least 40% efficient (as of 2012). That really means they aren't using "special" LEDs for these expensive gizmos, esp given the +/- 5% wavelength tolerance.

Also, the efficiency rating would mean to get 11.1W of light power on the skin, you'd need something like 27W of input electrical power.

Or, 2.775W of light power -> 7W electrical power input. 7W is totally doable for a handheld gizmo - if it's got a serious battery pack.

So probably halving the distance to skin and doubling treatment time to 15 minutes would be the best, but we'll see.

The one I ordered has a Li-ion battery pack (good sign) and they recommend 15 minutes of treatment...

 

[Laura]

I will start a thread on methylene blue over the next couple of days because it is truly miracle stuff, but just came across this study and felt it was pretty urgent to stick it up here for those suffering with this AI condition.

In short, intravenous Methylene Blue with red light (635nm) led to 6+month full remission in 5 out of 7 patients with HS. From what I know about methylene blue, it can probably also be used topically directly into the lesion, or orally (but may be less effective).

Abstract

Hidradenitis suppurativa is a chronic inflammatory skin disease which has an estimated prevalence of 1%. It is characterized by the formation of recurrent painful suppurative nodules and abscesses in the flexural areas of the body. It is believed that its pathogenesis involves an aberrant, genetically-determined activation of innate immunity against the bacterial commensal flora of intertriginous areas. It has been found that the formation of antibiotic-resistant bacterial biofilms is a common finding in hidradenitis lesions. Photodynamic therapy with different compounds and light sources has demonstrated its efficacy in a number of infectious diseases such as nail mycosis and chronic periodontitis. We retrospectively report our experience in the treatment of hidradenitis with photodynamic therapy using intralesional methylene blue and a 635 nm light-emitting diode lamp in 7 patients. Two patients received one session whereas 5 patients received two sessions. At one month follow-up good response was achieved in 6 patients. After 6 months, 5 patients (71%) maintained remission of the disease in the treated area. In view of the results and literature review, we regard methylene blue as an ideal photosensitizer for photodynamic therapy in this disease.

Link: http://pubs.rsc.org/en/Content/ArticleLanding/2016/PP/c6pp00082g#!divAbstract

Actually, it is not intravenous, but intralesional. That is, introducing the medication directly into the lesion either by topical application or possibly injection.

 

[Gaby]

Found another study with high rates of success:

Treatment of hidradenitis suppurativa with intralesional photodynamic therapy with 5-aminolevulinic acid and 630nm laser beam
https://www.ncbi.nlm.nih.gov/pubmed/28034606

Complete response was achieved in 68.2% of armpits, 88.5% of groins, 88.9% of buttocks and 100% of other locations. 18 out of 38 patients needed only a session to achieve a complete response, while maintaining a good tolerability.

They didn't use methylene blue, but they speculated that it would probably be even better than the stuff they used.

From the study:

Lesions were incubated under opaque occlusion for two hours before being irradiated (1.2 watt (W), fluence 180 joules (J/cm2)) with an intralesional 630 nm laser (Multidiode 630 PDT, Intermedic, Barcelona, Spain) through a fiber optic probe of 400 mm inserted within a centimeter marked needle. Follow up sessions, when needed, were performed on 5-7 week intervals

Far more complicated, but it is interesting to see that they are inserting the light into deep wounds. I'm attaching the illustration of the technique.

 

[Chu]

Keyhole, Gaby, does any of you have access to the actual papers? If so, we'd appreciate it a lot if you could send them over. I only managed to get abstracts. We wanted to see the actual method used on the one Keyhole quoted, quantities of methylene blue used, etc.

 

[Keyhole]

Keyhole, Gaby, does any of you have access to the actual papers? If so, we'd appreciate it a lot if you could send them over. I only managed to get abstracts. We wanted to see the actual method used on the one Keyhole quoted, quantities of methylene blue used, etc.

Here is the link to the full paper: link

Take a look at the "experimental" section. I couldn't find any specifics, since it was a retrospective study. It just briefly mentioned methylene blue as a 1% solution being injected into the lesion "until the lesion turned dark blue".

Gaby, since the original study was conducted in the Photodynamic clinic in the hospital near you in Spain, maybe you could contact the author of the study to ask for specifics?

Hope that helps.

P.S, if you ever come across any papers in the future that you cannot access in full, then all you need to do is copy the DOI number or URL and paste it into a website called Sci-hub, and it will let you access it for free. Here is the link to that website. I use it all the time :D

 

[Gaby]

Gaby, since the original study was conducted in the Photodynamic clinic in the hospital near you in Spain, maybe you could contact the author of the study to ask for specifics?

What other specifics are you interested in?

I can write them an e-mail, but if anyone has specific technical questions, I can arrange a visit in the last week of May to Huesca. It was a shared study between Barcelona (private hospital) and Huesca (public health care system), the main researchers are located in Barcelona.

I did a search for other similar studies and apparently there are several centers doing this therapy, maybe not methylene blue, but something similar. I downloaded and posted one just to give an idea of the gadgets they're using.

P.S, if you ever come across any papers in the future that you cannot access in full, then all you need to do is copy the DOI number or URL and paste it into a website called Sci-hub, and it will let you access it for free. Here is the link to that website. I use it all the time :D

Yeah, I don't use university subscriptions anymore. I have donated to http://sci-hub.cc/ though. I have downloaded so many papers that it was the least I could do. They have bitcoins as the main option, but if you keep clicking, at some point a paypal option will appear :) . Sci-Hub rocks!

 

[Keyhole]

Gaby, since the original study was conducted in the Photodynamic clinic in the hospital near you in Spain, maybe you could contact the author of the study to ask for specifics?

What other specifics are you interested in?

Well, I guess it would be to clarify dosage etc and was in reference to this post by Chu:

Keyhole, Gaby, does any of you have access to the actual papers? If so, we'd appreciate it a lot if you could send them over. I only managed to get abstracts. We wanted to see the actual method used on the one Keyhole quoted, quantities of methylene blue used, etc.

It was only a suggestion for if the information is not contained within the paper, and when I looked I couldn't find it.

 

[Gaby]

It was only a suggestion for if the information is not contained within the paper, and when I looked I couldn't find it.

It was methylene blue 1% solution, injected into the abscess until the lesion became dark blue. Methylene blue comes in that format already, 1% (10mg/mL). There are also tablets (Urolene 65mg) which apparently are only available in the U.S. (?). Then, there is the powder too.

 

[Chu]

Thank you guys! That was super useful. And thanks a lot for the tip regarding Sci-Hub. It's great!!! I managed to get that paper very easily.

 

[loreta]

At home we used methylene blue at the beginning of a cold, you put some methylene in your throad a little bit to stop the cold. And it works. It is a very strong desinfectant. I didn't know you can used it for other situations. Thanks for the information!

 

[truth seeker]

P.S, if you ever come across any papers in the future that you cannot access in full, then all you need to do is copy the DOI number or URL and paste it into a website called Sci-hub, and it will let you access it for free. Here is the link to that website. I use it all the time :D

I also wanted to thank you for the really helpful tip, Keyhole.

 

[Yas]

P.S, if you ever come across any papers in the future that you cannot access in full, then all you need to do is copy the DOI number or URL and paste it into a website called Sci-hub, and it will let you access it for free. Here is the link to that website. I use it all the time :D

I also wanted to thank you for the really helpful tip, Keyhole.

Me too! Thank you! And thank you for bringing up the information about this treatment! I sounds promising :)

 

[Scottie]

Of course, if you reduce the distance between the light and the skin so that the patch covered in red light is 1/4 the size (about 36cm2 or 5in2), then the power output for 8 minutes of treatment is reduced to 2.775 W, which is far more reasonable for a handheld, battery-powered device. Or, you just increase treatment time with the light.

The gizmo arrived!

In short:

It lasts 2 hours on a full charge, and has a battery that supplies 3.7V and 2.25Ah.

So, that would mean max 3.7V * 1.125A per hour, or 4.1625 W

Red LEDs are about 40% efficient, so that means 1.665W of actual light.

BUT, they say treatment distance is only 2-3cm from the skin, and it's definitely REALLY bright. Like, hurt your eyes bright...

It's charging now, and I'm sure a test will occur soon!

 

[Gaby]

Here is the link to the full paper: link

Several things come into mind. Skin necrosis and fat necrosis due to extravasation of methylene blue has been reported when it has been used in intravenous form. It is basically when an IV infusion is given and when the needle is not properly placed in the vein, some methylene blue escapes into the skin or the underskin (subcutaneous tissue). In this later case, necrosis of the skin or subcutaneous tissue has been described. It has also been reported when using methylene blue to dye a lymph node or cancerous lesion for resection. In some cases, this necrosis got infected and then it was a major problem requiring antibiotics and surgical debridement.

In this paper, they emphasized that they only injected abscesses and not lesions of hidradenitis suppurativa that were not "mature" enough. I think this is an important aspect to minimize the possible side effect of skin necrosis. When you have an abscess, the skin and subcutaneous tissue is already necrotized anyway. Second, the light seems to be the key to avoid this skin necrosis complication. They say:

On the other hand, we wouldn't have expected achieving the same results, had we treated dermic or hypodermic non-inflamed long-standing lesions

At a low-energy laser it [light] exerts a stimulating effect on cells and at a high-energy radiation it has an inhibitory effect. Moreover, macrophages exposed to 660nm low-level wavelengths release cytokines that stimulate fibroblast proliferation and the production of growth factors, thus influencing the inflammatory process and healing

Therefore, to ensure a therapeutic benefit, its use should be limited to inflamed and accessible lesions (unless a diode laser attached to an optical cable is available)[for deep lesions]

Treatment for unintended skin necrosis could be made with topical DMSO. When there is skin necrosis due to extravasation of intravenous chemo drugs, topical DMSO is used as a treatment as well. I think mainstream medicine uses DMSO 10% for this purpose, although DMSO rose cream comes to mind as a better option.

Some centers have experimented diluting the methylene blue 1% for intravenous injection. In the case of hidradenitis suppurativa, non-diluted methylene blue 1% seems to be ideal due to its anti-microbial properties and to sensitize the lesions that are to be exposed to the red light.

Neurotoxic effects have been described at very high doses of methylene blue (50mg/kg). In clinical practice, 1mg/kg is the standard maximum dose for safety measures.

Methylene blue comes in bottles of 10mg/ml (1%) or 5mg/ml.

There are severe allergic reactions reported, as with everything out there. In this case, the reactions are extremely rare and the norm is to not be allergic to methylene blue. In case of anaphylactic shock, a hospital setting will be ideal of course.

I think a good precaution is to try a mild dose of oral methylene blue to rule out any allergic reactions. When taken orally and at a minimal dose, any rare allergic reaction is more manageable. For this purpose, methylene blue 10mg/ml, 20 drops sublingually or orally could be a good tolerance test. That is basically 10mg orally. As a side note, this is the dose some people do for mitochondrial support and cognitive enhancement.

In summary, skin necrosis has been reported but it is not the norm though. It shouldn't be a problem when there is already an abscess because that lesion already has necrotic tissue. The therapeutic light and proper wound care would go a long way towards a good outcome. Also, guaranteeing purity of the methylene blue is important (10mg/ml in pharmaceutical grade form and/or for human use).