Blu-U vs. Accutane
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Fri Oct 22, 2010 9:37 am

I'm wondering if there's anyone out there that's tried Blu-U (with Levulan) and if so, what kind of results you had.

I've had a very bad (words cannot express just how bad-let's just say bad enough to lose my job-I work with the public) right cheek for some 6+months now. Currently on prednisone and Septra which is at least keeping some of the inflammation down. It got so huge that I've even had an ultrasound to see if there was some kind of bug inside. Even got an appointment at the Centre for Tropical disease (I travel a fair amount), which I've cancelled. According to the variety of derms I've seen, it's possibly the worst case of cystic acne even seen. Go big or go home, I always say Wink

The thing that I find odd is the amount of 'weeping' and localizatin (only my right cheek) of said cystic acne. But anyway...

Now the drs are telling me to go on accutane. I've tried accutane twice, never with any good results. I'm 37, wanting to have kids soon. To me, it seems silly to waste all that time and money on something that only gives me the crappy side effects and nothing else.

So it's been suggested I try Blu-U. No side effects but attacks the same bacteria as accutane. And I get a peel, which I'll assume helps in the whole anti aging process (my stress level has gone through the roof-so has my smoking. Ugh.).

What's the opinions of fellow sufferers? Am I being stubborn not trying accutane again? Has anyone tried Blu-U with great results?

Thanks for any input Smile

free skin care · Fri Oct 22, 2010 12:40 pm

Hi Truth,
If you've tried Accutane twice and it didn't work well for you, I would probably consider doing something else like the Levulan with IPL.

I also had cystic acne in my early 20's (though yours sounds alittle more severe) and one round of Accutane did the trick for me.

I've never done the Levulan treatment, but from what I've read, it can be a very effective treatment for acne. Is it recommended as a series of treatments? Could you do this in conjunction with a round of accutane?

Let us know what you decide to do. I understand how frustrating the whole situation can be.

free skin care · Fri Oct 22, 2010 12:57 pm

Hi Truth,
So sorry to hear about your situation. I have had acne and SUPER oily skin since I was 12. I tried Blu-U with levulan about 5 years ago with no luck. They usually leave the levulan on your skin for about 20 mins before they do the blue light part of the treatment but my skin was not responding at all after 2 treatments so they decided to leave the levulan on for 2 hours and then the light. That didn't make any difference
either so they tried the levulan with IPL for 2 more treatments (8 treatments in total). My skin did not improve one bit from these treatments although my pocket book was about $2000 lighter.
I have taken accutane 3 times - I just finished my last course 2 months ago. So far so good. The first 2 times that I did accutane my doctor did not give me a high enough dosage or a long enough treatment time. This time I had a different doctor and she seems to know what she is doing.
All that being said I don't think that what you have is cystic acne IMHO. It doesn't sound like your doctors really know what it is. The Blu-u isn't that expensive if you wanted to give it a try for a couple of treatments - it can't hurt. Just have them leave the levulan on your skin for quite a while. Good luck with whatever you decide to do!. Keep us posted.
Cathryn

free skin care · Fri Oct 22, 2010 2:04 pm

Please read up on the dangers of accutane. it is a very dangerous drug and Md's will most likely not disclose all side effects. I took it when i was a teenager for acne. it did work for me,side effects were crap.. but if i would have known of the side effects and possible future implications for me and my children's health i never would have taken it. Studies have now come out that state that my children and myself are at a grater risk of Chron's disease. I took accutane 26 years ago. If you are planning on having children soon i would stay away from it. After high school a friend of mine took it not knowing the dangers. She got pregnant and her son was born without a hand. i have heard of countless stories of people having serious health issues from taking it. I'm thankful that all of mine were moderate and i have had no long lasting effects as of yet.it is a VERY scary drug.

free skin care · Fri Oct 22, 2010 2:15 pm

Hittin40 wrote:

Please read up on the dangers of accutane. it is a very dangerous drug and Md's will most likely not disclose all side effects. I took it when i was a teenager for acne. it did work for me,side effects were crap.. but if i would have known of the side effects and possible future implications for me and my children's health i never would have taken it. Studies have now come out that state that my children and myself are at a grater risk of Chron's disease. I took accutane 26 years ago. If you are planning on having children soon i would stay away from it. After high school a friend of mine took it not knowing the dangers. She got pregnant and her son was born without a hand. i have heard of countless stories of people having serious health issues from taking it. I'm thankful that all of mine were moderate and i have had no long lasting effects as of yet.it is a VERY scary drug.

Hittin40,ta
Do you have a link to studies about the risk of Chron's disease increase due to taking accutane?
Thanks!

Fri Oct 22, 2010 3:13 pm

Thanks everyone,

Doodles, I agree that this isn't cystic acne. And eek! on all that money ill spent. Trust me when I say I feel your pain! I've done every route imaginable since this started in march. frankly, if Blu-U doesn't work, I may just learn to live with my cheek being a freak show! Lol!

I was been prone to cystic acne as a young teen, which is when I took accutane for a year-approx 25 yrs ago (the irresponsible doc put me on two sessions without time off and never checked up on me. being new I didn't know. now I know, I'd love to sue the pr*@ck.). I have memories of nose bleeds lasting for hours on end. The worse was, because of my fashion (kinda goth/punk at the time) people would just assume I was a coke head! Ha!! Oh the judgment...although I must say having this skin affliction as an adult is harder than teen. People are very rude...as I'm sure you all have experienced.

Anyway, back to the point. Through this experience one thing I've learned is that there is very little knowledge in skin and its' infections. Derms say everything is acne. boils are considered acne. Acne is a very broad term. Unfortunately, due to this lack of research and knowledge there are very few meds to turn to. And let's face it, the pharmacuticals push accutane.

I really do not want to go on accutane again, especially after some of your reports here. I know it's toxic and I'm not sure about the long term damage. Who knows, maybe this cheek thing is an aftermath of the internal vit a overdose.

I even went to a plastic surgeon last week to see if I could get it cut out (honestly, these lesions have been 'weeping' for 3 months now. All day. All night. Tell me how that wouldn't do your head in? Then add steroids....Ugh.) The surgeon said he believed the infection was running all through the base of my cheek, like a canal (I've been saying this since the beginning). All the nodules would be connected and there was no way of removing it unless he cut out my entire cheek and grafter some skin from my thigh. Rock on. but he is the one who suggested Blu -U.

So, does anyone else know of some other treatment that my team of derms may not have considered? And please, not to be offensive, but homeopathic doesn't work. It's just not strong enough for what i have. Although, if it worked for you, share it! Sorry for the flip-flopping. My mind's a bit off Wink

Oh, and if this was you, would you go to the Centre of Tropical Disease?

Thanks again everyone! It's great to hear from others have been down this horrid long road before!

free skin care · Fri Oct 22, 2010 4:54 pm

truth wrote:

Oh, and if this was you, would you go to the Centre of Tropical Disease?

Yes I would most definitely see a dr who deals in infectious disease as they usually see the uncommon disorders/infections that regulars dr's dont see.

If you have a teaching hospital nearby with a dermatology dept that would be another option to consider.

Have any of the derms you have seen done a biospy?

Hang in there. I know its hard dealing with something that hasn't been truly diagnosed but keep pushing and you will find an answer.

free skin care · Fri Oct 22, 2010 5:02 pm

There is more on the link. It is related to all forms of IBF (inflammatory bowel disease).

http://www.articlesbase.com/womens-health-articles/accutane-linked-to-ulcerative-colitis-2670285.html

Accutane linked to Ulcerative Colitis

Accutane, a synthetic form of vitamin A, is a prescription drug used to treat patients with severe cystic acne. Accutane is manufactured by Hoffmann-La Roche (Roche). The generic form, isotretinoin, is manufactured by a number of other pharmaceutical companies under the brand names Isotrexin, Sotret, Oratane, Izotek, Isotane, Amnesteem, and Claravis. Accutane has been reported to have many side effects, including blurred vision, dizziness, nausea, vomiting, seizures, depression, and suicide. Further observations have led to reports of Accutane ulcerative colitis and Crohn's disease that come under the heading inflammatory bowel disorders. Ulcerative colitis, as the name suggests, is an inflammation of the colon with the production of ulcers that destroy the intestinal lining. Many of the cells of the intestinal lining become damaged and begin bleeding, producing a bloody discharge. Quite often damage to the intestinal lining produces chronic diarrhea. Symptoms reported by patients and physicians include bloody stools, stomach cramping, and urgency to run to the bathroom. With the onset of ulcerative colitis, the patient's risk of developing colon cancer increases relative to that of the general population.

FDA Requires a New Warning Label on Accutane Inserts

free skin care · Fri Oct 22, 2010 5:10 pm

http://en.m.wikipedia.org/wiki/Isotretinoin?wasRedirected=true

Permanent side effects

The following adverse effects have been reported to persist, even after discontinuing therapy: alopecia (hair loss), arthralgias, decreased night vision, inflammatory bowel disease, degenerative disc disease, keloids, bone disease. High dosages of isotretinoin have been reported to cause rosacea (a disease of severe facial skin redness and irritation). It is not known how these side effects can be permanent but several studies have shown that Isotretinoin induces apoptosis (cell death) in various cells. A recent study[45] about how pharmaceuticals have epigenetic effects (for example DNA methylation) mentions Isotretinoin.

There have been reports that Accutane® (isotretinoin) can reduce libido and cause sexual dysfunction.[46]

Teratogenicity (birth defects)

Isotretinoin is a teratogen and is highly likely to cause birth defects if taken during pregnancy. A few of the more common birth defects that this drug can cause are hearing and visual impairment, missing or malformed earlobes, facial dysmorphism, and mental retardation. Isotretinoin is classified as FDA Pregnancy Category X and ADEC Category X, and use is contraindicated in pregnancy.[15]

The manufacturer recommends that pregnancy be excluded in female patients two weeks prior to commencement of isotretinoin, and that they should use two simultaneous forms of effective contraception at least one month prior to commencement, during, and for at least one month following isotretinoin therapy.[47]

In the U.S., more than 2,000 women have become pregnant while taking the drug between 1982 and 2003, with most pregnancies ending in abortion or miscarriage. About 160 babies with birth defects were born. As a consequence, the iPLEDGE program was introduced by the U.S. Food and Drug Administration on 12 August 2005 in an attempt to ensure that female patients receiving isotretinoin do not become pregnant. As of 1 March 2006, only prescribers registered and activated in iPLEDGE are able to prescribe isotretinoin, and only patients registered and qualified in iPLEDGE will be able to have isotretinoin dispensed. The iPLEDGE program also applies to males, even though there has been no evidence of isotretinoin excretion through seminal fluids.

Patients receiving isotretinoin therapy are not permitted to donate blood during and for at least one month after discontinuation of isotretinoin therapy due to its teratogenicity.[48]

Depression

Since the 1980s, scientific research has suggested a relationship between isotretinoin administration and the onset of psychological symptoms including depression, suicidal ideation, and psychosis.[49] However, there have also been studies arguing that there is no evidence of such a link. In a study in 2006, it was demonstrated for the first time that isotretinoin administration enhances depression-related behaviors in mice. The mechanism by which this occurs was not elucidated, although altered neuronal gene regulation and changes in hippocampal neurogenesis were thought to be involved.[49]

Several recent studies have shown a link between isotretinoin and clinical depression.[50][51] Psychiatrist Dr. Doug Bremner found decreased frontal lobe function on brain imaging in patients treated with Accutane (isotretinoin).[52] Bremner's study, which utilized positron emission tomography (PET), found that patients treated with isotretinion experienced an average twenty-one percent decrease in frontal-lobe brain activity. However, there were no changes in the depressive state of the patients that could be measured with the Hamilton depression scale. Bremner's findings have prompted members of the scientific community to call for more studies regarding isotretinion's links to depression and suicidal behavior.[53]

Various case reports of depression, suicidal ideation, suicide attempt, and suicide in patients treated with isotretinoin have been reported to the U.S. FDA Adverse Events Reporting System, with 431 cases reported between 1982 and May 2001 – of these, 37 patients had committed suicide.[54] This suicide rate is in line with national rates and does not exceed the national average.

Studies have shown that patients with acne, the population group eligible to receive isotretinoin therapy, have an increased risk of clinical depression compared with the general population.[55][56] Chee Hong describes Isotretinoin-related depression as "an idiosyncratic side-effect", claiming, often anxiety can bring on acne and depression, creating more anxiety.[57] Correspondingly, treatment of severe acne with isotretinoin has been shown to reduce anxiety and depression, for tests have shown acne to be a main depressant in most tested patients' lives.[58][59]

U.S. Representative Bart Stupak (D-MI) believes unadvertised psychological side-effects from the drug drove his teenage son Bartholomew Thomas Stupak Jr. to commit suicide in 2000.[60]

Crohn's disease and ulcerative colitis

Several scientific studies have posited that isotretinoin is a possible cause of Crohn's disease and ulcerative colitis in some individuals.[61][62][63] Three cases in the United States have gone to trial thus far, with all three resulting in multi-million dollar judgments against the makers of isotretinoin; there are an additional 425 cases pending.[64][65]

Fri Oct 22, 2010 5:18 pm

That's the thing, GirlieGirl, I've had two biopsies and an ultrasound. Even had my hormones tested. Normal hormones (save for my prolactin, but it's a 8 month waiting list-which I'm on-for the hormone specialist). The biopsies both came back gram-positive bacilli. This is a common bacteria that lives in everything around us. Nothing showed up in the ultrasound. Just a really bad, deep infection.

I've been to teaching hospitals, approx. 5 derms, incl. department head of one of our top hospitals, emerg. (when it was really just oozing for weeks on end), GPs, and now moving into the plastic surgeon side. None really know what it is but guess that it's cystic acne.

The surgeon last week advised me against going to tropical disease, even knowing my history etc.

I'm curious to see if it is actually "The worst case of cystic acne ever seen". So I'm asking you guys, to see if anyone else has suffered from very localized but off the rocker cystic acne. If it is indeed csytic acne, well, pat me on my back for going all the way with something! lol!

I repeat: Ugh. Smile

free skin care · Fri Oct 22, 2010 6:45 pm

I took Accutane twice as a teen, got adult acne at 28. Have been on Orthocyclen since age 33 & happily acne free. I think after the 29s bcp is really the better way to go. Adult acne is mostly hormonal. Accutane is a chemotherapy drug & does not clear acne permanently, I have not ever read a permanent success story. Rather it puts acne in "remission" for up to 10 years. In addition to all that's been said about the long term side effects, I have also read it speeds up the aging process due to being a chemotherapy drug that shortens telomeres. Bad stuff.

free skin care · Sat Oct 23, 2010 4:22 am

truth wrote:

The surgeon last week advised me against going to tropical disease, even knowing my history etc.

Why would the surgeon advise you not to go to the TD Center? Its just that you never know when you will run into a dr who will have a different idea about what is going on and how to fix it.

You may very well need to have IV/injectable antibiotics to treat what is going on. Some infections cant be treated with oral medications.

I'm sorry this situation is giving you such a hard time. I do feel for your situation. I know how horrible it is to have cystic acne and I recently had what turned out to be an infection that several dr's couldn't diagnose/treat until I went to an infection disease dr. You certainly have done alot to try to find answers, don't give up.

free skin care · Sat Oct 23, 2010 6:27 am

I can't understand your doctors telling you that either?

http://www.buddycom.com/bacteria/gnr.html

Some examples of Gram negative bacillus:

Gram Negative Bacilli

E coli
Citrobacter diversus
Achromobacter xyloxidans
Enterobacter cloacae
Morganella morganii
Xanthomonas maltophilia

free skin care · Sat Oct 23, 2010 7:08 am

I would check with different doctors until I had a definitive answer!

http://dermnetnz.mobify.me/bacterial/

Bacterial skin infections
Bacteria such as some Staphylococcus species, Corynebacterium spp., Brevibacterium spp and Acinetobacter live on normal skin and cause no harm. Propionibacteria live in the hair follicles of adult skin and contribute to acne.
Some bacteria invade normal skin, broken skin from eczema/dermatitis or wounds (causing wound infection). Bacteria, like viruses, may also sometimes result in exanthems (rashes). The most common bacteria to cause skin infections are:
Staphylococcus aureus
Folliculitis
Furunculosis (boils)
Impetigo (school sores)
Methicillin (meticillin) resistant Staph. aureus
Staphylococcal scalded skin syndrome
Toxic shock syndrome
Tropical pyomyositis
Botryomycosis (pyoderma vegetans)
Streptococcus pyogenes
Cellulitis
Erysipelas
Impetigo
Necrotising fasciitis
Scarlet fever
Rheumatic fever, erythema marginatum
Overgrowth of Corynebacterium spp. (erythrasma, pitted keratolysis & trichomycosis axillaris)
Less commonly, other bacteria may also cause infection with skin signs. These include:
Neisseria species, cause of gonorrhoea and meningococcal disease
Erysipelothrix insidiosa, cause of erysipeloid (usually an animal infection)
Haemophilus species, cause of chancroid and cellulitis in young children
Helicobacter pylori, a stomach infection, which may be associated with some cases of chronic urticaria and rosacea
Klebsiella rhinoscleromatis, cause of rhinoscleroma
Pseudomonas aeruginosa causes wound infections, athlete's foot, gram negative folliculitis, chronic paronychia, spa pool folliculitis and ecthyma gangrenosum
Calymmatobacterium granulomatis, cause of granuloma inguinale
Bacillus anthracis, cause of anthrax
Clostridium perfringens and other species cause gas gangrene
Treponema species cause syphilis, yaws and pinta
Bartonella species cause cat scratch fever, bacillary angiomatosis and bartonellosis
Mycobacterium species cause tuberculosis, leprosy and atypical mycobacterial infections including Buruli ulcer
Leptospira, cause of leptospirosis, which may cause bleeding into the skin (purpura)
Nocardia, cause of nocardiosis
Yersinia pestis, cause of bubonic plague, which causes swollen lymph glands and pustules, ulcers and scabs on the skin
Serratia marcescens, a facultative anaerobic gram-negative bacillus that may rarely cause skin infections such as cellulitis, abscesses and ulcers; usually in patients with immunodeficiency.
Fusibacterium species, Bacillus fusiformis, Treponema vincenti and other bacteria may result in tropical ulcer
Burkholderia species, cause of melioidosis and glanders, in which abscesses may be associated with systemic symptoms.
Actinomcyes species, cause of actinomycosis, in which granular bacteriosis occurs i.e. abscesses and sinus tracts draining sulphur-yellow granules.
Vibrio vulnificus, a cause of septic shock characterised by blood-filled blisters.
Brucella species, cause of brucellosis, a febrile illness caught from unvaccinated animals or their unpasteurised milk.
Tick-borne bacterial infections include:
Lyme disease, due to Borrelia burgdorferi
Relapsing fever, due to Babesia microti
Tularaemia, due to Francisella tularensis
Rickettsial diseases.
Other conditions sometimes caused by bacterial infection include:
Kawasaki disease (mucocutaneous lymph node syndrome)
Pseudofolliculitis barbae (shaving bumps)
Sarcoidosis
Scalp folliculitis
Osler nodes and Janeway lesions (bacterial endocarditis)
Vaginitis

free skin care · Sat Oct 23, 2010 9:02 pm

DarkMoon wrote:

I can't understand your doctors telling you that either?

http://www.buddycom.com/bacteria/gnr.html

Some examples of Gram negative bacillus:

Gram Negative Bacilli

E coli
Citrobacter diversus
Achromobacter xyloxidans
Enterobacter cloacae
Morganella morganii
Xanthomonas maltophilia

Some doctors I guess are not that smart.
You usually have to go to the library and read medical books yourself and then tell the doctor what you have...or maybe it is just me with super lame doctors here?

But as far as I know if you have any open wounds or even injuries and very opened skin you are supposed to get a tetanus shot (like if you cut yourself badly..not for face stuff maybe?)
and also probably take IV antibiotics for a few weeks.
I fell on the sidewalk and scrapped the skin off some fingers on my hands and had to take IV antbiotics a few times a week for a month I think it was at the hospital.
"they" tried giving me pill antibiotics but they made me extremely sick.

Also a few years ago I had a strange insect bite that turned into cellulitis and became infected (and was very painful).
I had to take pill antibiotics for a while for that...

Anyways, hopefully you can find some competent doctor. there seem to be so many lousy ones thesedays.
I'm just trying to make some guesses based on stuff I've seen or know.
you should probably do more reading just check.

I just read that loooong list:
i am never drinking unpasteurized milk.
know many people who do. I do not drink milk unless it is chocolate milk or a dessert.
-but really did not know this about raw milk

Tue Oct 26, 2010 9:35 am

Hi guys!

I went this morning to the infectious disease specialists. Happy I went. They believe that it's a deep bacterial infection, and with it, my 'normal' cystic acne (possibly caused by the prednisone and stress). They've put me on a higher dose of bactrim to kill off the infection and are doing some blood work, and seeing if I have any parasites. They doubt, as do I, that I picked up anything in Africa.

I'm happy I went. It was nice to not hear Accutane! My dermo is so pushing me to take it. Really, do they or do they not get kickbacks?

The docs today (they got a team together to look at my face) said I should see good (they actually said great but at this point I'm a little apprehensive) results in a month. That I should be totally clear. So we'll just have to wait.

I pray this does the trick. Or the last resort will have to be...

free skin care · Tue Oct 26, 2010 9:58 am

Hi truth,

I am so glad to hear you went there! It sounds like you are on the right track to healing this infection! Just remember it didn't happen overnight so the healing will take time as well! YAY for you! Smile

free skin care · Tue Oct 26, 2010 10:18 am

Hi truth

I'll be keeping my fingers crossed for you! *Hugs*

Tue Oct 26, 2010 2:24 pm

Thanks everyone!

Funny thing happened-went to get my prescription filled and it seems it's exactly what I've been taking. Lol (ironic lol). But I'm going to change how I take the dose and perhaps that'll make the difference.

Keeping positive! And that's thanks to all of your support!

Thanks again everyone Smile

You're all awesome!

Tue Oct 26, 2010 4:07 pm

truth,

I am SO amazed that you've kept your sense of humor through all of this. You're an inspiration. Smile

Hope the new dosage does the trick! What a nightmare. *fingers crossed for you*

free skin care · Tue Oct 26, 2010 5:43 pm

Good luck to you truth. I hope the different dosage of bactrim works for you.

Make sure to take some pro-biotics so your balance of GOOD bacteria doesn't die off with the higher dosage you're going to be on.

Wed Oct 27, 2010 10:23 pm

Good luck! It can be hard, I understand. There was only one foundation I was able to find that would cover my acne when it was superbad, mine was very bad.. I had to go on accutane. The foundation was good, and helped so much with my self esteem at the time. It was this super coverage kind I picked up at clinique. It was almost like stage makeup, but it was a lifesaver because I felt like I could go out in public again. Don't worry most skin eventually clears up.

Fri Oct 29, 2010 8:17 pm

i recommend Kefir or homemade yogurt for the intestinal flora (store bought often has so much sugar it doesn't help at all) and i have been reading up in the other forum on the violet ray or high frequency device. lots of the ladies over there swear by it for infection and acne related stuff.

my mom is suffering from a weird rash that weeps as well - hers is all over her face - she is using zinc creams with zeolite mixed in. i am not sure who told her to do this. i am going to suggest the violet ray to her.

also - accutane - i took it and it worked wonders for me. and for myself - my personal experience - no side effects AT ALL(i did not get pregnant of course and i am not knocking others who did have side effects but just to know that not everyone does get them). and i don't know if the docs get kickbacks with it as it is so dangerous and everyone is so litigious with it - i had to argue with my doc for three years to get it and i had to sign papers, do birth control (iud as well) and do testings for kidney function and cholesterol and be checked for depression blah blah . it was an ordeal to get the medicine, but for me absolutely worth it - my skin was so beautiful when taking it. i have had permanent reduction in acne with it also.
i will keep track of this topic to see if there is anything i can suggest to my mom!

free skin care · Fri Oct 29, 2010 8:39 pm

beestherbub,

One of the huge issues with the permanent effects after taking accutane is that they can appear many years later!
A personal story I had a friend who took accutane in her early 20's and developed Crohn's Disease 10 years later, before hitting 40 she lost her battle with this horrid disease and passed away.

Sun Oct 31, 2010 3:43 pm

truth wrote:

Thanks everyone!

Funny thing happened-went to get my prescription filled and it seems it's exactly what I've been taking. Lol (ironic lol). But I'm going to change how I take the dose and perhaps that'll make the difference.

Keeping positive! And that's thanks to all of your support!

Thanks again everyone Smile

You're all awesome!

How are you doing now, truth? Any improvements?

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