Isotrinoin

[MeadowHay]

I have finally started a very long overdue course of isotretinoin. Had to wait ages due to very long NHS waiting list for dermatology in my area. The irony is that just as quickly as my acne flared up, it has hugely calmed down in the wait! Consultant still thought it was worth it though. I have a lot of scarring unfortunately though :( but he said wait to see what the results are like after this before thinking about that which is sensible enough advice.

Anyway I forgot to ask, can anyone advise:

1. Can I continue to get my face threaded whilst I'm on it? The leaflet just said not to wax. I am v v v hairy and feel sick and anxious at the prospect of stopping my threading for 6-12 months.
2. Are there any specific products people would recommend for use during treatment? E.g. moisturisers, face washes, makeup removers etc? I have eczema as it is so consultant warned me I will likely be particularly prone to dry skin effects.

Threading, I would speak to the therapist in case it’s contraindicated.

I just used Aldi foaming cleanser & plain day cream plus sunblock everyday.

Your body gets dry too so you’ll need more body lotion than normal, moisturising eye drops and a lanolin based lip balm. I used bepentham nappy cream. Luckily it’s all v cheap. Doublebase is very moisturising as long as you don’t massage it in.

My hair got really dry and dull but it comes back. Mine fell out a bit too but apparently that’s a rarer side effect. It’s all back now.

You might get vaginal dryness too. That’s really itchy so just slap some nappy cream on.

It’s a fantastic drug though, I never knew you could wake up with no spots in the morning but you can.

I took mine at night, I figured I’d be over most side effects by morning. Cod science but it worked for me.

My nhs dermatololohist recommended la Roche posay face wash and moisturiser as well as cetraben emollient for my lips (its like thick vaseline) and it all helped a lot!

Same as the above poster my hair dried out but for me it was great, so shiny and only had to wash it once a week!

Going on it was the best thing I ever did! It sorted my skin right out!

Sorry botnsure what a dermatololohist is 😂 I meant dermatologist obviously

Thanks!

Will look into that facewash.

I don't like Doublebase, too thick, makes me uncomfortable. I have Diprobase on prescription so will continue to use that but I usually use No.7 serum and their day cream with SPF in for my face so not sure if I need to pick even gentler products for my face? And Body Shop vit e eye cream and night cream.

I swear I can honestly feel the difference in my hair and skin in just a few days of taking it. Is that possible or just a weird placebo type effect?

How long until I start to see improvement in my acne?!

Also, not S&B really but did anyone have problems wearing contacts? And can you drink on it? Felt like the patient information leaflet was not clear about alcohol and the consultant didn't mention it.

I wouldn’t drink on it, it’s a strong drug. I got a leaflet saying don’t drink and skip your dose if you do. You’ll need a proper sunblock. Imagine your going to Dubai in the middle of their summer. Then buy a sunblock to go with that. You really ought to be wearing sunblock everyday anyway to prevent ageing & skin cancers.

No, you won’t manage to keep the contacts up but if your on a plan email them to suspend deliveries.

It does start to work really quickly but my face didn’t match my neck until I’d finished the 4 month course. I didn’t break out but I’d been taking lymecycline for 6 months before hand. I had two tiny spots just after cessation but that’s it.

Have they told you how long you’ll be on it?.

Consultant said 6-12 months course is the norm and higher doses usually mean a shorter treatment cycle but more side effects. I am on 20mg once a day. My acne is not that bad atm though so I'm hoping 6m will be enough as we are thinking about TTC again towards to the end of the year so that timing would be good.

I only wear contacts once a month or so for cosmetic reasons, I have a stash of them. The consultant said I might still be fine with them but depends on the person and I could try using eye drops frequently with them if they feel dry so fingers crossed. Just was wondering if anyone on here had an anecdotal experience. My eyes get a bit dry anyway especially with them so might Bea no go for me but we will see.

Ps Hi Fluffy, hope you're well btw!

Hi yes we’re fine except my cat died 😭.

There’s a minimum mg per kg of body weight they need to get into your system, you need to hit the minimum requirements. I weigh 50kg so I was on 40mg for 16 weeks.

Ordinary hypermellose eye drops from the supermarkets work well, if it’s really itchy you can get hylauronic gel for the eyes. It can be difficult to get them out, they sort of stick to your eyeball.

I had a look on the NHS website and it said 0.5mg per kg so 40mg is very high for your weight! I'm only on 20mg atm, they only come in 10 and 20mg tablets though as otherwise I would be on 25mg as I also weigh about 50kg. I wonder if they will review my dosage when I next go in to see the nurse.

Sorry to hear about your cat, it is awful losing a pet, I'm so sorry x

Thank you.

It’s the cumulative dose I meant but I explained it poorly. You need 120-150mg per kg for it to work. What they did with me was a blood test after a month to check the liver was ok, negative pg test and then they raised it by 10mg.

I never hit the 120mg, I hit 95mg per kg but she reckons I’ve had enough for it to work and said if it happened again to request a ref back to them.

I took two doses by accident one night, felt awful.

Hi, so I had my appt with the derm nurse this week.

She said that I can't get threaded on the treatment, I am devastated because I am really hairy (just my genetics/ethnic background)!! It really really affects my self-esteem. She also said I am looking at a 12 month course of the isotretinoin if we continue at this dose. I am gutted tbh as a) I really don't know how I will manage psychologically without being threaded for A YEAR given how that will affect my appearance, and b) we were planning to potentially start TTC towards autumn/winter 2020. She was reluctant to increase my dose and so I'm still on 20mg this month.

I am managing fine from a side-effects POV so far, the only thing that is really irritating me just started in the last week or so which is my scalp. It's really really itchy and flaky with being dry, and I have very dark hair so I'm paranoid about the visibility of the dandruff.

Anyway we did agree we would review it again next month though, I made clear that I really don't want to be on this for 12 months if I can help it.

Does anyone have recommendations to help with the scalp situation? It's not a totally new experience for me as I have eczema and have had bouts of it on my scalp before, but I've never got it this intensely in this short a period of time iyswim. I am thinking washing it less probably is beneficial? But then it's difficult as I worry about turning up to work with visible dandruff D:

I did some searching online before I went and saw that lots of people online get threaded whilst on the treatment so I don't know whether to just try it or maybe try a small area first where I don't have scarring, e.g. just eyebrows and see how I go but idk whether that would be stupid or not really.

Surely some women must do some types of hair removal whilst on the treatment?

I think Superdrug sell small razors for eyebrows you could try those.

Anti dandruff shampoo from Tesco got me through the itchy scalp phase.

I’m afraid that’s the choice with isotret though, you either whack through it in 4 months and take the pain or you take the pain over 12 months but you need that cumulative dose of 120-150mg per kg for it to work long term.

Mine only gave me 88mg cumulative dose so I am resigned to going on it again eventually.

Don’t get threaded, it’s not worth risking the damage to your skin. You are going through the hell of Tret to improve your skin, so there’s no point doing anything that’s going to make other bits of it worse. I don’t think there’s any reason you can’t use a home IPL system like a Lumea (double check though).

It’s not dandruff on your scalp, it’s dry skin so you need moisturising everything, shampoo, conditioner, masks etc. Make sure they are sulphate free too. Brands like Palmers, OGX, Shea Moisture, Maui Moisture and Cantu are worth a try. You can ask your dermatologist for a scalp treatment next time you see them too.

I really liked the consultant I saw last time but I felt so rushed in the appt with the nurse this week. I did tell her about the scalp issue and she didn't say anything about it at all she just laughed and then said that's a reason not to increase my dose . I have also just realised she didn't give me a form to get bloods done in my local phlebotomy clinic in advance if next month's appt like the consultant gave me last time. I thought we were meant to have bloods monthly? I didn't think of it at the time as was anxious and felt rushed and I would have thought I could trust the nurse to sort if necessary? Do you think that is an error or do we not need monthly bloods? I have called the team and left a voicemail so hopefully someone will call me back to clarify. All my future appointments will be with this nurse too now.

I had baseline bloods and then again after one month then I don’t think anything till month three then nothing as I came off after 4 months.

I think dryness is unavoidable tbh. Each side effect only lasts a short period then your body adjusts. I only saw the consultant for the first and last appt.

20mg is such a low dose. At least you know it’s doing something.

My DS has been on 40mg for a month but the nosebleeds are so bad it's been halved today (and they cauterised his nose while we were there). The Dr said not to be disheartened about reducing the dose, it still works but just means staying on it longer.

Eeeeek nose bleeds. I deffo under estimated how difficult it could be to be on this drug in my desperate-to-be-acne-free black hole. I hope your DS is ok!

I think I will see how I am over the next month and if tolerating everything ok still then see if I can go up to 30mg to try. I really don't want to be on it for a year if theres any way I can avoid it.

Thanks everyone for listening to me whinge

It is a great drug and really does work. My skin was amazing on itbut unfortunately I did not complete the course as I stopped due to side effects.

My acne returned within a few months. I was so sad as it was a hard thing to go through.

Your skin will prob be quite sore so you may not be able to bare the threading anyway, I'm sorry. I found it hard to pluck my eyebrows.

It makes your skin thin so if you waxed it could literally rip it off.

For lips I found lansinoh nipple cream the absolute best thing, you'll need it frequently.

From now on each product you use needs to be gentle and moisturising. So no drying acne products at all. I used a cream cleanser and slavered on moisturisers and oils overnight. Smae on my hands.

I found the dryer scalp a benefit as could wash hair less often.

A horrid side effect I had from the very first dose was an eye twitch, but never heard anyone else say that.

If you stick with it for a year you will prob hVe clear skin for life. But do watch your mental health. I had never suffered with mine. But the drug triggered some anxiety and dark depression so watch out.