Isotetrinoin/Accutane as TREATMENT?

[OompaLoompa]

Hello,

I am new to this forum. My name is Emil and I am 20 years old.

Currently, I am considering Isotetrinoin/Accutane as a treatment for my MGD.

I've been suffering from dry eyes for about 3 years now.

I believe, my case is rather specific - mostly due to my age, I guess - even though I'm aware that a high ratio of dry-eye-diseases can be ascribed to extremely individual causes.

Many doctors have told me many stories about my disease. In the beginning it was obvious for anyone to see that I had a blepharitis. Then, however, I introduced a strict eyelid-cleaning-routine on a daily basis into my life. The appearance and, to be honest, also the symptoms improved more or less. Still, as i know now, the main reason for inflammation and my dry eyes have always been clogged meibomian glands. I think, these clogged meibomian glands cause inflammation which again reduces the tear production of my lacriminal gland. I've never had any problems with dry eyes AT ALL up until I hit puberty. Acne, seborrhea - in short: My skin started going crazy. I strongly believe in this connection since I don't see any superior logic in explanations of doctors who tend to tell me that my lacriminal glands just "stopped" producing healthy amounts of tears. (Not believing in this connection basically means to assume that my meibomian glands just coincidentally started to become all ****ed up at the same time as my lacriminal glands stopped producing healthy amounts of tears...)

Anyway, at the moment I'm using cyclosporin-eye-drops to deal with the acute symptoms.

However, I am indeed - in consultation with my dermatologist - on the verge of trying out an extremely unorthodox approach: I am thinking about using isotetrinoin (accutane) as a possible treatment for my dry eyes. Yes, exactly that stuff that caused dry eyes for many others in the first place. The idea, however, is quite simple: I have seborrhea, acne and comedones. An important factor for comedones to emerge is hyperkeratinization. I do believe that my meibomian glands become clogged due to some combination of too much meibomian secretion being produced (=seborrhea) and hyperkeratinization. Considering that meibomian glands are just special kinds of sebaceous glands it doesn't seem far-fetched to assume that isotetrinoin as a treatment for comedones (meaning it works against hyperkeratinization) can unclog not just normal sebaceous glands but also meibomian glands. Note: I also have comedones in the skin area around my eyes which - again - leads me to the assumption that my meibomian glands are clogged in an extremely similar way as my normal sebaceous glands.

Now, none of this logic can take away my fear of possibly damaging my meibomian glands to an even greater extent than they already are by using isotetrinoin.

Since isotetrinoin somehow works on the sebaceous glands and changes them (which includes the meibomian glands) I'm scared of doing irreversible damage. My dermatologist tells me that the glands would definitely "recover"/change back if I haven't used the low-dosage isotetrinoin for more than 1-2 months(assuming that 1-2 months are enough to judge if it helps or makes it worse).

The problematic ambivalence is that I feel like my eyes are on the edge of being "suitable" for everyday life. Even though I have a bunch of different problems I can manage to live a life. On the other hand, the "problems" my dry eyes cause seem to big to ignore a possible "cure"/promising treatment. But...- and that's what I mean by "on the edge of being suitable for everyday life" - I fear that if my eyes get any worse, we could be talking about problems on a whole different level like inability to work etc.

Therefore I hope that some people here can advise me on this.

What do you think of my general idea of using isotetrinoin/accutane as a treatment?

What do you know about the reversibility of the changes that isotetrinoin induces on the meibomian glands (respectively sebaceous glands in general)? (This is the main question because in case the changes indeed are reversible then there aren't many reason against trying it out.) Maybe you even have individual experiences besides formal knowledge?



I would be so thankful for any help!


Best regards,

Emil


PS: Please keep in mind that I'm aware that the effects of a completed isotetrinoin-regimen with normal to high dosages can be quite lasting. However, I'm wondering about the reversibility of isotetrinoin-effects after having used it low-dosage for 1-2 months.

[Mr Zygon]

Hi

I definitely bouldn't do it. Howver I was on Accutane three times. The first two were low dosages and I had very little problems. The third was high dosage and completely ruined my life. Tears less than >5 and ended up with cauterised eyes.

[littlemermaid]

Personally, I wouldn't do it. We used topical retinoid prescribed by dermatologist around the mouth and nose, and saw similar exudate from meibomian glands, and stopped immediately. This was prescribed twice a day so was used topically at night, which I notice is now advised against in US because it transfers during sleep to round the eyes. I understand what you're saying. I think Dr Scheffer Tseng did use retinoid briefly like this in the early days of his MGD research, but obviously he stopped. Apologies to him if I'm wrong. We were told in ophthalmology that retinoids reduce the aqueous but I don't think that's true. It looks like there are cell changes in the walls of the acini. I've not met a dermatologist who knows about retinoids and meibomian glands, and we've asked 7 so far and a room full of post-graduates.

[OompaLoompa]

Thanks to you both for your answers.

@ Mr Zygon: As I said, It's not like I believe isotetrinoin would be a general cure for MGD. I'm sure, in many cases it's the cause. Judging by the data I know I still find it unlikely that isotetrinoin (accutane) affected your tear production DIRECTLY. It may have caused proplems with MGD, therefore inflammation and as a last step all of that created a permanent sickening disturbance for your lacriminal glands.


@littlemermaid:

http://www.ncbi.nlm.nih.gov/pubmed/1832371

I spontaneously found this again. There also is at least one other source claiming that isotetrinoin doesn't affect the tear production. I'd just have to search my bookmarks thouroughly.

Also, did you understand me correctly? I'm talking about oral isotetrinoin (accutane), not topical. I guess, there could be some smimilarities but since I'm no doctor I'd be very skeptical about just transfering any experience people may have had with topical isotetrinoin to the oral usage. Additionally I'd like to point out again that I'm totally aware that there indeed are dry-eye patients for whom isotetrinoin would be a terrible choice. No doubts about that. However, if I haven't done my lid massage for ONE DAY I can press out white tallow out of my lids which can easily be seen without any magnifier. It's just so incredibily similar to comedones ("white heads" and "black heads"). Aaaand I also have comedones all over my eye area, meaning just under the eye brows etc.

About the meibomian glands: The question is how similar meibomian glands and sebaceous glands of the skin actually are. I was told by a very competent ophtalmologist that at least from an evolutionary point of view meibomian glands are very similar to those of your "normal" skin.

Anyways, I'm awaiting an answer by a professor of ophtalmology (in germany medical professors are in actual practice, not sure how it is elsewhere) so I guess that will play a major role in my decision.

PS:
You claim, you've never met any dermatologists who kew stuff about retinoids. Counterquestion: How many opthalmologists did you meet that really knew anything about retinoids and sebacous glands in general? I went to quite a few eye doctors and to be honest most of the time the diagnosis of my meibomian glands was about "There doesn't come enough secretion out of your glands." I think some told me they were clogged, some even just said they wouldnt produce enough. Meaning: If you doubt the advice of my dermatologist you should do the same with the negative undifferentiated image isotetrinoin has in ophtalmology.

May I ask if you have any formal medical education? Your style of writing somehow suggests that. (No criticism of course in case you haven't!)



I still would be thankful for any other input at all!

[littlemermaid]

Dr Tseng did try retinoids for MGD http://www.ncbi.nlm.nih.gov/pubmed/?...eng+s+retinoid - he might correspond with you.

How many opthalmologists did you meet that really knew anything about retinoids and sebacous glands in general?

Zero out of 14 (4 profs).

No criticism of course in case you haven't!

Sorry, no - BA Medieval Literature.

[Mr Zygon]

@Oompaloompa

After taking Roaccutane in 2000 my schirmer test was around 3 for my left eye so I think it did reduce the Aqueous component considerably.

My eye did recover after cauterisation and I was able to lead a completely normal life until this year when I was exposed to chemicals and now its stuffed again and I'm on restasis and in pain 24/7...

[Rojzen]

Isotretinoin dilemma: Q. about prior Abx attempts and retinoic acid

Emil - Kudos to you for your mastery of the issues, here, and for weighing so smartly and carefully the potential costs and benefits.

In my 2nd or 3rd year of MGD, some time ago, I was also offered a trial of high-dose isotretinoin. The offer came from the dermatologist I was seeing for the mild rosacea that he believed might be associated with the atrophy and drop-out of my meibomian glands. . .By the time I was seeing this doctor, I had already been through two years of treatment with another experimental Vitamin A topical (topical retinoic acid prescribed by the brilliant Dr. Scheffer Tseng, then at Bascom Palmer Eye Institute).

I signed all the paperwork for the isotretinoin, and then backed out at the last minute, for all the reasons you have identified as risks. It is entirely possible that it might have provided a breakthrough, but I was determined to find a less risky option, ultimately. I'm sure you know that isotretinoin has been implicated in development of chronic bowel disorders, in addition to the ocular impacts you've mentioned. . .and so there are risks beyond our eyelids that should be considered here, along the way.

The theory behind retinoic acid was that it could achieve a gentle chemical peel of the metaplasia covering atrophied meibomian glands. It did this for me, to a very mild extent (not enough to change my tear film break-up time), but other patients who used it experienced dramatic improvements. . .i.e., an uncovering of the glands, and restoration of secretion. . .I do not believe that Dr. Scheffer brought this approach to clinical trials, but it is possible that topical retinoic acid is still being offered somewhere, if only experimentally. . .It was provided to me in ointment form (compounded specially). . Unfortunately, the base was petrolatum, which disagrees greatly with me, but I never suffered any harm, pain, or setback from the extended treatment. The product was applied directly to the eyelid margins. . .Bascom Palmer, at that time, supplied it a very low cost, to me.

So I'm suggesting that you seek out retinoic acid, and also wonder whether you've already been through the standard long-term antibiotics. . .These did not help me, in particular, and long-term tetracycline and doxycycline therapy carry some systemic risks (more so in women, though). . .but for some, where there is acne and/or rosacea, these can help to reactivate meibomians. . .Topical -cyclines have also been around, at least experimentally, for some time, in the DES community. . .(Topical doxy didn't help me, but I believe it has helped others...)

Finally, I heartily recommend that while you are continuing to seek a reversal of the status of the meibomians, you use FreshKote, the only commercially available (and now OTC) high oncotic pressure drop, to protect and heal corneal epithelium and, in turn, support your mucin-secreting goblet cells. . .My meibomians are gone for good, now, and have been for over 15 years, but I survive very comfortably on FreshKote. . .If you see my many posts on this, you'll see that for me, using it exclusively and religiously, for 7 months, was necessary before my tear film began to improve. . but in the end, I went from disabled, with moisture chamber glasses on 24/7, to working again and being able to enjoy outdoors, etc., with no goggles/chambers. . .The only way, in my view, to tell whether FreshKote will make up, in function, for what you've lost in the meibomians, is to be patient with it. . and, I believe, exclusive with it. . .

Please feel free to private-message me for further details. . .I will be cheering you on, in meantime. .

[OompaLoompa]

Thanks to everyone for your answers!

Hello Rojzen,

of course I'd like to thank you specifically for taking the time to write that detailed response.

I'm sorry I haven't answered earlier but I had lots of stuff to do and once I'm in a kind of workflow I like to keep a certain distance to the topic of my eyes being dry since it tends to get me in bad moods (=unproductive) etc.

I've been through the "standard long-term antibiotics". I used doxycycline for about a year and it didn't really help. However, I have a question here: I once used minocyclin for about a month when I was a teenager because of my acne (I didn't have my eye problems back then.) in preparation for a longer camping trip (standard topical treatment would have been unpratical). The minocyclin did help my acne extremely. So, about a year later my eye-doctor put me on doxycyclin and I was really looking forward to it since I thought I knew that it would have some effect on me at least. However, to my surprise the doxycycline treatment wasn't just ineffective concerning the eyes but it also didn't change anything about my skin. Ever since I've been wondering wether it would be worth a try to go on minocyclin another time to see if it helps with my eyes. I haven't done it because every doctor and every source on the internet claims the effects of minocyclin and doxycyclin are pretty much the same, only differences seem to be about the side-effects. what do you think about that?


About isotetrinoin:
You always talk about "topical" isotetrinoin. Did you want to try it orally? And what kind of treatments did Dr. Scheffer try? Just the topical ones?

Btw.: I have recently checked my hormone-levels - normal. (Thought that maybe too much androgenes could cause the seborrhea.) Now all I have left to check is my vitamin-a-level. (It affects sebum- and tear-production.) After that I think I'll go for the isotetrinoin if my ophtalmologist doesn't have any major concerns. Probably I'll also try to contact Dr. Scheffer before but at the bottom line I simply see more chances than risks and being totally honest with myself I doubt that I could bear the thought for the rest of my life that there might be a cure for me and I'm just too "scared" to try it out.

Oh, I also had the idea that a celiac disease could be the cause of my dry eyes. I got tested. One blood test (blood test=specific antibody - they test one blood sample for different antibodies) was positive, the others were all negative (--> one type of antibodies was at a unnomrllay high level). My biopsy was negative but there were some suspicious patterns though that couldn't be interpreted to complete satisfaction. The one blood test which was positive responded to a gluten-free diet - it became negative. However, after being gluten-free for about 9-10 months I still don't feel any recovery about my eyes. Also I generally don't feel any "healthier". (Not that I would feel "sick" except for the eyes.) So, basically there still is some uncertainty about that but there really is no indication that a possible celiac-disease of mine would be related to my eye-problems. Still: do you know anything about that?


Thanks in advance for your efforts! And of course: If anyone else has answers/input for me that would also be fantastic!

Best regards,

Emil