Retinoid Toxicity?

[NMM]

Hi Everyone, I'm a new member but have been reading posts for more than 1 1/2 years. Onset of my dry eyes was hard define, attributed to computer use, allergies, tired eyes, so I never did anything about it or made any connections to the root cause. Then, I had the occasional bad episode of painful eyes, but this would always go away by the morning. Fast forward, started using Retin-A and within one month I could not keep my eyes open, burning, itching, unbearable pain!. Then, the onset of dry mouth. Couple this with the sever lower back/hip pain I had been having, I assumed Sjogren's disease. But I have tested negative for everything, even had a negative lip biopsy. So I've been obsessing over the last 18 months and reading everything I can get my hands on and there seems to be a correlation with my symptoms and Accutane use. Now, I never took Accutane but I HAVE take multiple courses of Retinoids over the years. And thinking retrospectively, I'm almost positive my lower back/hip pain and initial eye irritation (other symptoms too - carpal tunnel & cubital tunnel syndromes, dents in fingernails/toenails, thinning hair, flu-like bodyaches, fatigue, sore body when waking) all correspond to the period when I started taking Tazorac (a topical retinoid) for a bumpy forehead and acne Rosacea. But I NEVER thought there could be a connection. Even stopped for a while, then started back up again. A few months after that is when I started taking Retin-A and the ruined eyes ensued. (Oh, and I also have low bone density.) My meibomian glands are atrophied and produce very little oil and I'm plagued by debilitating chronic inflammation. The latest weird symptom, I have inflammation of the cartilidge in my breast bone (Costochodritis). To me, this all adds up to Retinoid/Vit A toxicity. I feel like I'm living in the Twilight Zone. Some days are so bad, I lose all hope and can't stop crying. I have 2 beautiful children and amazing husband and I want my life back! Has anyone else experienced anything similar? My PCP said I can't attribute all of my ailments to the same thing that is causing my eye problems. But I feel pretty strongly about this. Might be wrong, but I don't want to be dismissed.

[farmgirl]

Wow! I'd be looking for some weird virus or something to cause all of that, but if I were you, regardless of the source of my problems, I would go on a nutritional healing program under the direction of a specialist in that area. You really need the body to heal itself from the inside out and you can only do that through detoxification and nutrition with no cheating. My guess is that in a year or two you will probably feel a LOT better. My thoughts.

[pythonidler]

My only advice to you at this point would be to ask your PCP for a referral to a specialist - perhaps a rheumatologist, who specializes in auto-immune conditions. It's safe to say that nobody in the "Patients Only" forum is a doctor, so I don't think anyone here should try to diagnose you.

If you haven't already been seeing a specialist - do it ASAP. If you already see a specialist for a while and it's clear nothing is working, seek a second opinion. Either way, the sooner you can get an appointment with a doctor who can help you, the sooner you can feel better.

[Hokucat]

Hi NMM. I too had many other symptoms similar to yours, in addition to severe dry eyes, for several years. But I am much better now, and I agree with the above two posts it might be beneficial to seek out a nutritional healing specialist, and also a second medical opinion.

My eyes were soooo dry, I could not keep them open and was totally photophobic. I could not work, drive, read, use the computer, watch TV, tolerate any kind of fan or slight wind, etc. My husband was basically operating like a single dad, I was functioning at 20% capacity. My meibomian glands were clogged and yielded only thick oil when expressed/probed, and were atrophied. After dry eyes came dry mouth and throat, thinning hair, joint pain, sore and numb limbs when sitting or lying down for just five minutes, all skin got extremely dry and scaley (including my face which all my life has been oily), lips peeling and cracking at corners, and many other problems.

I saw an M.D. naturopath who tested and treated me on things my medical doctors did not, and he educated me and retooled my diet. All this did not help my dry eyes, but did reduce most other symptoms. As far as second medical opinions, one rheumatologist recommended I have chemo because he was 99% sure based on all my symptoms I had Sjogrens even though tests were negative, and was willing to convince the insurance company on the chemo. I opted not to, but it was another potential treatment not offered by my other medical doctors, which continued to give me hope.

My eyes ultimately got better, from drinking fresh lemon juice in green tea daily. See my post:

http://www.dryeyezone.com/talk/forum...evere-dry-eyes

I doubt I would have continued to adjust my diet and find the lemon/tea if I had not seen the naturopath. I also had a wart growing bigger for 6 months prior to the lemon/tea, but it completely went away within three months of drinking the lemon/tea. So for me, the lemon/tea gave me something my body really needed. For you and others, it may be something else. But from my experience and others' posts in this forum, diet/nutrition really made a difference in the overall healing process. Just know it's not something that fixes things overnight.

[NMM]

Hokucat, Thank you for your detailed response. I will look into a naturopath, but as you know, this stuff is SO expensive. I also spent thousands on my eye treatments last year alone, which I can't do if I don't work, but I can't work when I feel like this. I will definitely try green tea with lemon (I read your other post and will follow your method) but will try decaf. It can't hurt to give it a shot, but unfortunately, I don't seem to have much oil left in my glands. When the doctor expresses them, the few that are open are always clear and scanty.

By any chance did you use Retin-A or lots of medicated skin products for your oily skin? I just feel like there should be more caution when prescribing this stuff. I thought it was all very innocuous so when I had dry eye symptoms (and all the rest) never stopped using the products because these were not listed side effects.

[Hokucat]

No, I did not use Retin-A or any medicated skin products. I totally agree prescription, as well as OTC meds, can have consequences which are not fully communicated and/or emphasized.

Sounds like you have tried many eye treatments, from the more standard warm compresses, punctual plugs, goggles/eyewear, to more extensive treatments like meibomian gland expression, IPL, etc.? If so and none of these worked for you, did you ever try scleral lenses? These are nickel-sized dome-shaped contacts that keep a layer of saline over your eye, being used more in recent years to treat dry eye. When I initially got them my eyes were so dry, it was uncomfortable to wear them, but as my eyes started getting a little better I tried them again. Now I wear them 12 hours a day, they are an integral part of helping me manage my dry eye symptoms. Some people cannot tolerate them, so it's not for everyone. If you want more info, below is the link to info on the Boston PROSE scleral lenses. PROSE is just what I'm familiar with and their site has a good overview. I also included a link below to a thread shared by someone in this forum, where several patients had successful experiences with a doctor who fitted them with scleral lenses, and it was a fraction of the cost of PROSE.

http://www.bostonsight.org/PROSE/PRO...y-Eye-Syndrome

http://www.dryeyezone.com/talk/forum...t-scleral-lens

Also here is a link to Purdue University's study on the health benefits of combining lemon/citrus fruits with green tea that might be of interest since you are going to give that a try:

http://www.purdue.edu/uns/x/2007b/07...rruzziTea.html

Things will get better, once you find the thing or combination of things that works for you.

[waterbee]

i completely understand how you feel, im so sorry your feeling like this. i too was in a similar situation a few years ago and although my dry eye has not completely cleared, i have seen a good improvement compared to where i was two years ago when i needed drops every 5 minutes and could not even walk down stairs due to the wind it would cause to burn my eyes. (to give you a indication to how much ive improved ive sat on my computer for 4 hours tonight and used drops twice.) i too was suicidal and desperate when i came to this forum. i quickly learn that there was no one answer for everyone, and i needed to look into every aspect of my life style and the build up to what happened before i started to get dry eyes.

now i have spent some money trying to get to the bottom of my situation. money i had saved for the future which i have chosen to put into looking at other treatments but mostly at researching and investigating the cause. these have all been helpful for me. funny enough the things that didn't work where actually treatments aimed at dry eye, like lipoflow ect (now that was an epic waste of money for me 1200 pounds. but i know this works for some so had to try)

i would advice you to look into a few things to start of with.

the first one is simple things like vitamin deficiencies, rather then test for them, which is money you could simply just start taking some vitamin D (which is linked to dry eye, you can find stuff on it with a quick search) other (but rare) vitamin issues might be vitamin A and vitamin B12 (including ferritin)

second, is a virus called EBV. this is a virus we all get as kids and usually never see it again, but some times if we are run down and very stressed (dry eye can do this to anyone) if can get reactivated. this virus plays a role in drying out mucus, it likes the throat, eyes and causes muscle pain. there is no way to find it unless you do a blood test, and even then you are looking at the chronic reactivated form, NOT THE PAST ANTIBODIES (which even docs get confused about) to learn more you can search for chronic epstein barr, many who are misdiagnosed with it think they also have chronic fatigue. your body is stuck in a loop and cant get rid of the virus for years. antivirals can help but there are herbs which are good too and not pricey,

third if you still cannot find answers i would strongly advice to have a lyme disease blood test done, lyme loves the eyes and there are co infections that can also bring lots of dry eye pain. although this is no always easy to treat there is hope for the future and people do get better. there are people who have actually had alot of issues with there eyes (look for strange eye symptoms of lyme on google) i know manys first reaction would be "look if a tic bit me i would see it! ew" but most don't ever see a tic or get a rash and have no idea. i mean they just found lyme in london central parks, so it really can be anywhere. when i had IV treatment for lyme it improved my dry eye pain dramatically. (you dont have to have iv, you can take simple abx tablets) i think its worth looking into all of these. it didnt fix my dry eye but as you can see it helped.

finally, look at your diet. i only just found out, after two years that nightshade veggies are making me A LOT worse then i need to feel. its s histamine issue and on top of that a blood tests has shown i have huge issues with gluten (great) i also (after testing, in a specialist clinic which looks for symptoms other places don't) found out i have a allergy (this did not show on my standard NHS TESTS) so im now looking at doing some allergies vaccines.

dont give up looking or listen to doctors who tell you this is how it will be forever. ive seen other people who joined the forum at the same time as me , go on to live normal lifes and find the answer to there dry eye (not always a 100% cure but enough that it doesn't nother them at all) you just need to find yours.