Adapalene story

Where are you from (country)?
USA

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)
Facebook invite

What is your current age, height, weight?
Age 32, 3’2", 119 pounds

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Adapalene (C28H28O3) a topical retinoid. I used an SSRI as a child.

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
Enough to cover my face day and night.

What condition was being treated with the drug?
Mild Acne

For how long did you take the drug (weeks/months/years)?
About a week, then again for a couple weeks w/ oil to attempt to withstand dryness.

How old were you, and WHEN (date) did you start the drug?
About 23

How old were you when you quit, and WHEN (date) did you quit?
About 23

How did you quit (cold turkey or taper off)?
Cold

How long into your usage did you notice the onset of side effects?
Immediately, probably day one and then an increase in symptoms immediately every time I put it on.

What side effects did you experience that have yet to resolve since discontinuation?
All of them aside from eczema on my face.
Dryness, internal dryness, digestive issues, rapid heartbeat, fatigue, headaches, muscle aches, sexual issues, mental focus, eye issues, sleep troubles, loss of vivid dreams.

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
Loss of Libido / Sex Drive
Erectile Dysfunction
Complete Impotence
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate
Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
Emotional Blunting / Emotionally Flat
Difficulty Focusing / Concentrating
Confusion
Memory Loss / Forgetfulness
Stumbling over Words / Losing Train of Thought
Slurring of Speech
Lack of Motivation / Feeling Passive / Complacency
Extreme Anxiety / Panic Attacks
Severe Depression / Melancholy
Suicidal Thoughts

Physical
Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
Weight Gain
Gynecomastia (male breasts)
Muscle Wastage
Muscle Weakness
Joint Pain
Dry / Dark Circles under eyes

Misc
Prostate pain
Persistent Fatigue / Exhaustion
Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Hearing loss
Increased hair loss
Frequent urination
Lowered body temperature

Other (please explain)
Chronic infections, yeast, trouble keeping eye focused, twitching, crawling sensations on skin, food intolerances, yellowing of skin, weight loss, nausea, pain in gut, extreme fatigue and weakness when lifting arms, nerve-like pains, slowness, hypothyroidism, pain during orgasm, tightening of body.

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Antibiotics, antifungals, 5HTP, vitamins and minerals, diet adjustments, brief chelation, antihistamines, thyroid medication, DHEA, and others…

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?

No pre-drug test results as I never needed any.
Post drug, I had:
High TSH, low T3 and T4 hormones. Low free T and E, on occasions.

Additionally:
Low B6, low B2, low alkaline phosphatase.
Organic Acids: High Arabinose (yeast) Over twice upper limit of normal.; High Hippuric (bacteria) Over twice upper limit of normal; Low Glycolic; High Lactic; High Fumaric, Malic, 2-Oxoglutaric, Aconitic, and Citric.
Mitochondrial marker 3-Hydroxyglutaric was High.
Dopamine marker HVA was normal with VMA epinephrine marker slightly higher but normal.
5HIAA serotonin marker low, almost nothing, but no low normal value is listed.
Quinolinic normal but ratio to 5HIAA was VERY high.
Ketone and Fatty Acid Oxidation markers Methylsuccinic, Adipic, Suberic all high.
Salicylate marker was normal.
Glutathione markers were normal.

Positive for some (semi specific) bacteria.
Inflammatory marker Calprotectin normal.
Anti-gliadin IgA was High.

DHEA-S Normal.
Sjorgren antibodies 0.

High Intolerances to many foods and yeast.

All other standard tests so far normal, including B12 and D2. Autoimmune markers normal.

Anything not listed in the above questions you’d like to share about your experience?

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
Living hell.

On: Sandpaper eyelids, eczema on my face and worsening of cystic acne. Bizarre insomnia and energy. 8X daily BMs. Headaches. Rapid weight loss.
The day I stopped: Slowing of BMs, extreme faitgue, aches, skin begins to yellow, metal focus deteriorates, weird nightly depression grows into chronic fatigue, bloating, weight gain and then weight loss again, and more and more for the past 6 years.

I’m including all this here in the hope that someone reads it and an answer-light switches on.

Edited to add:
FSH was normal a couple years ago.
Recent Estradiol on day 2 was normal (low end, but hard to say if that mean anything on day 2)
Testosterone normal, middle range…

7 Likes

I’m sorry to hear you’re going through this. I don’t recall for sure but I believe Adapalene is antiandrogenic. At the very least it has the potential to cause the issues we’re facing.

Please take the survey to help us figure this out.

1 Like

Thanks for joining. It is good that you shared this because others have asked me if topicals like Retin-A are safe and I have always responded by simply telling them that I have never heard of severe symptoms like those associated with Accutane from topicals. This can serve as a warning.

1 Like

I actually use this product. From what I’m aware it doesn’t enter the blood but increases photosensitivity.

There have been members who landed here thinking they were safe using topicals like minoxidil and ketaconazole. Not sure how well-studied absorption of many topical products really is. https://forum.propeciahelp.com/search?q=minoxidil

Adapalene is very lipophilic, so blood levels may not reflect systemic levels.

1 Like

Yeah i do find I’m needing less but I’m not sure if it’s other stuff I’m doing. I realise it’s not ideal but I can’t imagine being able to stop using it altogether, hopefully I will be using less and less in the future.

I used a large amount of coconut oil at the time to keep my skin from burning. :frowning: What a mistake… But with the only side effect supposedly being dryness where the gel was applied, I thought it was no big deal…

I’ll take the survey if I actually remember to, but I still get an error and it says I do not have an invite.

2 Likes

Hmm. I will look into this today. An invite will be manually sent if need be.

Hi @snowy,

Firstly, I’m sorry to hear you’ve had this experience with Adalpene. The staff of this site are of the opinion Adalpene, being a retinoid, could plausibly have mechanistic overlap with the conditions experienced here. On an anecdotal note, a late post-finasteride patient and friend unfortunately got considerably worse after use of this topically.

@Dubya_B pinged me to say you were having trouble accessing the survey. The system is telling me that you were issued an invite today, so it may have just been slightly late coming through. Could you please, when logged in on a desktop or laptop, click the bar graph icon in the top right of the forum and see if you can now access the survey via the link? Let me know if not and we’ll look into it further.

Best regards,

axo

1 Like

Thanks. I can take the survey now. But, I do not have data for when I began the drug or exactly how long I used it. I only have an estimate… My estimate is 3 weeks tops, but I am not sure. It may have been less. Of course I never thought it would be relevant. I hope I don’t need to be exact.

Such an estimate is fine. I’m sure you’re clear on the rough ideas of things like time used. Just use the best info available to you.

Best

Should I leave out what months I used the medication? I do not remember which months.

I hate giving guesses and incorrect data. I had no idea what was going on as I started getting sick, but I have records of when medications were prescribed so I know when my symptoms had reached their worst for that year. This form asks for estimates of weeks or months… I could say it was very gradual from day one, though I am sure by one month in I was developing worse issues. I hope that info isn’t significant to anyone.

Honestly, don’t worry too much. It’s been designed to tolerate the kind of estimation you are discussing - it’s more than good enough to use your best estimate, and just guess for which month if you dont recall precisely. For some people this is a long time ago, after all - but that still gives a clear timescale as a result for a patient of six years, even if it is a couple of months out. The main point is to get the clinical picture on aggregate amongst patients across a vast number of data points (the survey collects 2500 potential data points per patient). In your case given you used a topical retinoid it will be for comparison for overlap with other groups. There is also text boxes for any elaboration you feel is strictly necessary.

1 Like

Thank you. I elaborated. I hope that’s ok. And this survey will take me at least two hours. Wow!

3 Likes

You can always save and resume later at any point so there’s no need to rush :slight_smile:

1 Like