1. Community
  2. Skin and nails
  3. Hidradenitis Suppurativa

Anyone on isotretinoin/Accutane for HS?

Posted , 11 users are following.

bagpuss81
bagpuss81

I have Crohn's, PCOS and HS to name but a few of my delightful conditions plus severe depressive disorder and general anxiety disorder. I've been having HS symptoms since I was around 14, maybe even younger. HS wise I am a stage 3, my dermatologist states it's more like an advanced stage 3 due to having over 24 current sites (varying from barely ripe to constantly draining).

After finally getting help for the HS (was too afraid due to other issues) I ended up in the care of a very decent and kind dermatologist here in Sussex. Having said that she has continuously prescribed me lotions and potions, which I have always tried following instructions etc. Despite that I know for a fact topical treatments just don't work at all for me. My dermatologist has clearly had success from other patients so always feels I'm not doing it for long enough (apparently 6 months isn't long enough??). Anyway, because of fact I've tried all the lotions I asked about alternatives. We discussed things like Humira & Infliximab (had these for Crohn's but not a dot of change for skin). She then mentioned isotretinoin, roaccutane as it's better known. After a few months of thinking, talking it through with others (dermo discussing it with others) and more thinking I decided I would go for it. I'm a lesbian and have a coil (medical reasons) but still proved wasn't pregnant etc, blood tests were as ok as could be.

So, I've been on 10mg isotretinoin now since Tuesday 3rd March (taken 6 x 10mg now). I've been taking it at lunchtime so that it's not being taken at same time as antidepressants or quetiapine (taken just before bed). I've got the dry skin and lips for which I'm sorting as best I can. I am also, however, experiencing intrusive thoughts and I feel as if my depression is slipping. I don't want to undo months of hard work by mental health teams and medications.

Any advice gratefully received! Thank you.

1 like, 15 replies

15 Replies

  • whoshunny15289
    whoshunny15289 bagpuss81

    Posted

    call your doctor right away and explain what is going on with your mental health. They may want you to stop that medication if its making that worse. Dont ignore it get medical advice. I dont know what those meds are or what the side. Effect. Are but talk to a doctor. Good luck

     

  • atticus2169
    atticus2169 bagpuss81

    Posted

    Like whoshunny said, contact your doctor and let them know what's going on. Use your best judgment, it's your body and your mental health, you're the only person who can say whether taking this drug is worth it.

    I know the side effects can be pretty disturbing. I was placed on accutane at one point and man did it screw with my head; mood swings, depression, ridiculous amounts of rage, and I actually ended up having a few extremely violent hallucinations (scared the ever-living daylights out of me), along with a host of other more physical symptoms before I stopped taking it. It took almost a full year for my mood to stabilize. I wouldn't touch that crap again for all the money in the world. My OBGYN thinks it's because I already had a hormonal imbalance because of my PCOS, so maybe something similar is happening with you?

    With autoimmune diseases, especially HS and Crohns stress and depression only exacerbate our symptoms. So I'm not sure the accutane will be of much help anyway if you're this stressed out.

    Have you tried doing an elimination diet? Nightshades and gluten in particular seem to be pretty strong triggers for those of us with HS. I don't have very much experience with Crohns, so I can't say what it'd do for that, but eliminating nightshades has done wonders for both my mental and physical health, and has put me in remission after ten years of dealing with this crap.

    Good luck and hope you feel better soon.

    • bagpuss81
      bagpuss81 atticus2169

      Posted

      I've tried that diet, tried it for 6 months but found no improvement whatsoever. Know it helps a few but being gluten free already means diet already restricted. I have even tried just being on fortified drinks such as Fortisip.

      These disease sucks!

    • atticus2169
      atticus2169 bagpuss81

      Posted

      I know and I'm so sorry you havn't been able to find relief from this humdinger of a disease. I'm sure they'll come up for a cure for this disease when we're all old and wrinkly and on our death beds, once the drug companies are convinced there are enough of us out here suffering to make money off of us.

      And I don't mean to beat a dead horse here, but just wanted to let you know Fortisip contains maltodextrin, which is almost always derived from potatoes. If you were drinking this during your elimination diet, I'm sure you wouldn't have had any success. I used to drink this when I was having issues with ulcers, and I know it's a trigger for me. Have you tried keeping a food diary to track your breakouts? I know a couple of people who did the elimination diet and didn't see any difference, and then found out later that there was some random ingredient in their food, like vegetable oil, lactic acid or modified food starch that was triggering a breakout.

    • aussie76
      aussie76 bagpuss81

      Posted

      I guess it doesn't work for everyone, but I was disbeliever on the nightshades.. Suffered for 20 years. Finally removed potato's and my problems are so far solved.

      When you feel a flare... First sign of redness.. What did you eat 12 hrs ago?

      Maybe add probiotics to your diet to.. All your issues seem to be autoimmune.

  • crystal_08850
    crystal_08850 bagpuss81

    Posted

    Eliminating nightshades and peanuts has also put me in remission after being in stage 4 HS. Google "nightshades and autoimmune" and read about it! Call your doctor about your side effects first. I did try autoimmune suppressing drugs before remission and they did not help me. Good luck!
  • nikki1734
    nikki1734 bagpuss81

    Posted

    Hi, I'm on Accutane as well as infliximab infusions. I am also on sertraline and quetiapine so I know exactly what your saying. I felt my mental health suffering so I got back in touch with the mental health team who now send a community nurse round once a week to check on me. I also see the psychiatrist every 8 weeks.

    It is hard dealing with HS, mental health and gastro issues (although they think my tummy issues are caused by Lupus now) as its like a vicious cycle. Dermo medication can affect your moods, but so does the skin condition. I also find quetiapine to be the thorn in my side as its ruled out all the decent treatments for Lupus and the joint pain associated with it.

    All I can advise is to take it one day at a time, keep the mental health team close by and put yourself first x

  • claire55351
    claire55351 bagpuss81

    Posted

    Hi

    Like yourself i suffer with depression n anxiety.

    With what you're saying i strongly recommend that you contact you're doctors asap so you can discuss whats going on n all your new medication. Depression n anxiety can be a slippery slope, i known only to well so go grap help now ☺

    Good luck.

  • helen28603
    helen28603 bagpuss81

    Posted

    Hello

    I also have PCOS and HS and I was put on Isotretanion for severe acne on my face and was on quite a lot higher dose than what you are on, the dermatologist at the hospital also gave me the tropical lotions and they didn't do anything for me either.

    I had never had any mental health problems and to be honest I think that the isotretanion actually gave me GAD and I was also put on sertraline, the isotretanion made my HS and my mood a lot worse and I ended up seeing a counsellor.  My face is ok now but I have been on doxyclyine for monthsfor HS  and that didn't work, I don't have as many lumps as you though and I do not have crohns.  I tried cutting out the nightshades and stopped taking the sertraline and doxycline.  Cutting out nightshades was hard as it is all the foods I like.  I went to the doctors again recently as nothing was working for me and I was starting to get bad spots on my face again and yes stress does play a part to this and your anxiety etc.  The Doctor said that there is no evidence that food types can help so I am back eating normallly again and I am now on Lymacycline which is one of the doxy treatments so I am seeing how I go with this and this one works for me.

    To sum up I wouldn't recommend isotretanion at all as it is so strong and I know they do keep an eye on you while you are on it, but this seemed to be regarding your skin mainly and if anything else was wrong because of it all they said was to go and see your GP and fobbed you off, you need to look out for your own health and if this is making you worse you need to stop it.

    Good luck!

  • Valerie19955
    Valerie19955 bagpuss81

    Posted

    Can you tell me more about the diet, what are nightshades?
    • crystal_08850
      crystal_08850 Valerie19955

      Posted

      You can Google the scientific reasons of why nightshades are bad for people with autoimmune conditions but the nightshades are tobacco, potatoes, eggplant, peppers, any kind of spices made from peppers (paprika is one and it's in so much stuff) and seems like something else but I can't remember what it is because I didn't eat it anyway or had never heard of it. I stay in remission as long as I don't eat nightshades. The slightest bit of nightshades will cause me to flare. Shredded cheese for example is coated in potato starch. I will flare if I eat it so I shred my own cheese. I have to watch all ingredients!

      I'm also sensitive to coconut and nuts.

      The day I cut out nightshade vegetables my HS started calming down. The same day! It took about a month for all the inflammation to go away.

      Good luck!

    • Valerie19955
      Valerie19955 crystal_08850

      Posted

      Thank you for replying, I will pass this on to my daughter, I know she likes cheese. Many thanks.
    • aussie76
      aussie76 Valerie19955

      Posted

      For me.. I can eat a bit if shredded cheese, tomato sauce.. Even chilli...

      Just half a potato will set me off. (and I get it bad for 20 years, only recently discovered the connection)

      So people dont need to go overboard.. There will be varying levels of sensitivity. Remove nightshades first.. Then maybe play with small amounts

  • aussie76
    aussie76 bagpuss81

    Posted

    I'm shocked you would be prescribed roaccutane it has very well known side effects of causing depression.

    It didn't affect my mental state.. I hammered it at really strong doses for 6 months... And it did clear up all my acne but didn't make an impact on the HS. Dermo said I could take it for 6-18 months, but after 6 months... There was no progress and the dryness was too much.Coincidentally my pilonidal cysts got massively worse during that period.

    Rifampicin and clindamycin might help?

    Any abscesses you can get surgically removed might help the others

  • winfield82600
    winfield82600 bagpuss81

    Posted

    Do you think the accutane had helped your HS? Thankfully the accutane is a short term treatment so hopefully you can stop soon and your other side effects will go away.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.