Well, I’m not really sure where to go from here.
The Accutane works. My face was clear all throughout the holidays and it felt like I got a little bit of my life back, and y’all, when I say that was amazing. Just, wow.
But the side effects. Oh my God, the side effects.
So, let me preface by saying that everyone is different, and everyone reacts to medicines differently, and I don’t want to scare anyone away from a treatment that might work very well for them. But I want to share my experience, just in case anyone needs validation, or has questions, or is just curious. This is definitely not the update I wanted to give.
Let’s start here. My face cleared up! Yay! My skin also dried out everywhere. And I mean everywhere. Every mucus membrane, and nothing I did to help with that side effect (lotion, an Omega-3 supplement, changing soaps and showering habits) actually helped at all. The dryness, though, I could handle. It was expected and wasn’t so bad. Well, not on my face at least. It was less than tolerable in other places.
Which brings me to my eyes. About two months into the treatment, after my dermatologist and I had agreed to up my dose (as is standard), my eyelids just went insane. None of my glands wanted to work. Everything just stopped up, and my eyes got all red and gross and watery, and my eyelids got really inflamed and swollen, and my lashes were all full of flakes and tear residue. And long story short, after a weekend visit to the eye doctor, I can confirm I now have ocular rosacea as well. Because Type 1 and Type 2 were not enough. Sigh. One steroid drop prescription and treatment plan later, and I’m doing a little better. But my eyes still aren’t normal, and I’m real tired, y’all, real tired of wearing my glasses instead of my contacts. Lucy is happy, though, and tries to pull them off of my face a few times a day.
Even the eyes, though, I think I could handle. Maybe. But I experienced some weird mental symptoms, too. My dermatologist did not think they were Accutane-related, but they coincided with the bump in my dose. My anxiety skyrocketed, and I started to have really strange, not-me thoughts about the hopelessness of life. I never think that way. I love life.
And I love my hair, which is now really thin at my hairline. I just don’t know if it’s worth it to lose my hair to clear my face, you know? They say that it’s temporary, but it’s very visible, and it makes me very uncomfortable.
I’m just generally uncomfortable these days, actually. My joints got super achy, and I’m also having some abdominal pain and really awkward, painful GI issues. Again, can’t say if they’re caused by the Accutane, but things are certainly not the same in my gut since I started the medicine.
About a month ago, my dermatologist recommended that I knock my dose back down. I tried that. No changes. So, I tried taking the pill only every other day. I still wasn’t happy about the side effects. So, I’ve just stopped the medication for now. Unfortunately, my face has started to break out again, especially around my mouth, which makes me feel so pretty. But I’m just not certain I want to continue. I’ve got an appointment at the end of the month to check in, and I plan to discuss all of this. We’ll see where we go from there.
I’ve suspected for a long time that there’s an underlying cause to this rosacea – hormones, maybe, or something to do with my gut, or maybe even my thyroid. Maybe that will be my next step. But for now, I’ll just be here, obsessively applying lotion and hoping that my stomach settles down and I can wear my contacts again one day.
A Virginia Writer's Diary 
oh my god, this makes me sooo soooo sad. i cannot stand the thought of you suffering a snowball of awfulnesses. as one with dry eye, dry mouth, i get it. all the dried-up bits are no no fun, and we suddenly realize (as is true with so many maladies) how much of us had been working just fine without notice—till suddenly it stopped. i know you are beautiful no matter what splotches show up where. look how lucy looks at you: she sees what is soo soo obvious to so many. blessings, and big hug, and prayers that this siege draws swiftly to a close.
>
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I needed this sweet comment today. Thank you! It’s hard to remember the things that really matter – your heart, your mind, your kindness – when your face looks like it’s on fire, but you’re so right. And you’re right about things working fine without notice. I am more grateful than I think I’ve ever been for the things that are doing just fine right now. And hoping the things that aren’t will work themselves out.
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Hope you feel better soon with good results!
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Thank you so much!
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Follow your head and heart for what you need to do, and science when you can find it these days. (For what it might be worth to you, I find the National Institute for Health-NIH-research to be the most helpful and readily available for free. Just search for NIH.) While childbirth does not come without side effects, nor does medicine, I salute you for making the choices that are best for you and Lucy, and the rest will work itself out sooner or later.
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Thank you so much! I made a bunch of appointments last week, and so I’m hoping to have some answers soon. I’m certainly more grateful for good health and things working correctly than I think I have ever been before.
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Good wishes. Hugs.
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Thank you so much!
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Oddly, I stopped wearing my contacts a couple of years ago. It just became more work–cleaning, rinsing, etc.–than I needed in life. I like my look without glasses, but my life is just easier without the contacts.
But I hope this journey gets to be a smoother ride for you. Your heart and soul and mind are the true you.
Love ya, Kelly
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Thank you so much for the sweet words! Yeah, glasses are convenient in a lot of ways, and if not for the toddler, I might not mind so much.
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My Blood cancer 1B was diagnosed through my skin patches-I was swimming with a group-you know, we are in Florida, and we go year round and I noticed the patches. I was diagnosed with mycosis fungoides which is a type of lymphoma cancer. It was treated and is still being treated by the VA dermatologist. What I did learn is that often there are misdiagnosis with docs thinking it is eczema and it is not. That being said, the VA dermatologist was on cue and I will still have it but it was caught early and was treated with ultraviolet therapy for almost 1 year or longer, 3 x a week and topical lotion. A second opinion is good but I found that I trusted my dermatologist completely.
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That’s so scary! And I’m glad you caught it and had a doctor you trusted. It’s so important to trust ourselves when we feel like there’s something wrong, and then to push for the right diagnosis and treatment. I saw a GI last week, so I’m keeping my fingers crossed that I can at least get that under control.
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As others have written, I hope you find a helpful solution and best to follow your intuition. I’m sorry you’re going through this.🌻
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Thank you so much!
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Oh Katie, this sounds just awful. I hope you can find a treatment that works, and soon. Maggie
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Thank you so much! It’s going to be a journey, but I’ll get there eventually.
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Sorry for the discomfort. I feel for you. Don’t know if you want suggestions: Do you take a probiotic?
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Thank you! I got in with a GI doctor last week, so we’re currently doing some tests to figure out what’s going to help, including perhaps a probiotic. We shall see!
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Wishing you good health!
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Thank you!
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