Can someone talk me through the process of being prescribed Roaccutane?

[Tentoseveninthemorning]

DD (16) had an initial appointment in January with GP, who referred her to the local hospital and said she thought DD would need Roaccutane (we've tried so many other treatments from GP which haven't worked). This morning I got a call for DDs appointment which is in May and it's with the community dermatologist department.

I'm assuming that they won't be able to prescribe it but hoping they can then refer us? Has anyone experience of what will happen?

Thank you

My son is on this and it was prescribed by a Dr at a local community clinic, rather than at a hospital. The Dr actually specialises in end of life care!

Oh, that's good (not the end of life bit). My poor DD, she's been suffering for years now and tried so many things and really wants to get a referral soon.

Has it worked for your son?

My son had Roaccutaine - initial appointment at the hospital - follow up appointments nursing team. Other than really dry lips he was fine and his skin cleared over about 6 months.

Thank you. Good to hear it's worked for others.

It worked brilliantly for me and my very severe acne never returned either

It was very mentally debilitating for me actually

My DM went to a private dermatologist who prescribed it for me years ago. You wouldn't have got it in the NHS back then

We went private as we had been going back and forth to the GP for ds for years and we were worried about scarring. His face, chest and back were convered.

He started in November on a low dose, and has had a few check ups and blood tests. It’s had its ups and downs but his skin is now pretty much clear! It’s amazing!

After the first month there was an improvement but then in stalled for a bit. Then it would get slightly worse, before a big improvement and this was the pattern. I would say his skin has been clear now for about a month.

Weve used an online consultant who’s been amazing and prescribed after the first video call (you have to send photos as well). I thought it had to be prescribed by a consultant but I may be wrong.

The side effects for ds has been extremely dry skin and lips, what seems to come in fits and starts as well. It’s not for the faint hearted but it’s been worth it for us.

My dd is on it.she has suffered for years and years prescribed various oral and topical medication which didn't work. During lockdown we done an online appointment with doctor and he finally agreed to refer her to dermatology. The wait was a good few months but we'll worth it. Her skin is now beautiful. I know it's not a nice medication to take but the benefits have outweighed it. Acne is so debilitating.

My daughter had Roaccutane.
She had an initial blood test for liver functionality which was repeated after a month as it can affect the liver.
She was seen every month and any issues discussed before she was given the next month's worth.
She did have dry lips but not much else. Had to be very careful in the sun as it thins the skin.
She had it for 5 months and 2 years later still has beautiful clear skin.
It was definitely worth it for her and I'm glad she did it.

If they do prescribe it, I think they also make you go on the pill (even if single)

Thank you. So it sounds like maybe this is an initial appointment with a dermatologist.

@bellalou1234 was yours a private consultation or NHS?

I don't think they will prescribe it straight away as I'm sure they have to do blood tests initially and will arrange for your DD to be put on the pill, as pregnancy very ill-advised.Then assuming all ok, your DD will start. My daughter had it several years ago, monthly visits, plus monthly pregnancy tests!
It worked very well for her, has generally not come back, she gets the odd spot now and again but nothing major. Her mood was ok, just the usual dry lips and skin and more tired than normal, although teenagers seem permanently tired anyway. Good luck.

Hi my dd has gone through this process. We also attended a community derm clinic, the nurse was able to prescribe the roaccutaine after her bloods and pregnancy test. My dd had acne on her face, back and chest. The only side effects were dry lips and nose bleeds. My dd was on it for the maximum 7 months on the highest dose, her skin 2 years later is still amazingly clear. I am so glad they offer this on the NHS.

Thanks all - sounds really promising.

I've taken it (at aged40) and so has my teenage son. He had to try all other treatments first before they prescribe and he was very carefully monitored. As others said, dry skin and lips plus a bit of hair loss. If your daughter takes it over summer she will need to be scrupulous about using very high SPF as the skin burns more easily. I had to take a pregnancy test every month at the hospital before they prescribed. We both had amazing results - it really is incredibly successful.

Mine was nhs, prescribed on the first appt and I had to use the hospital pharmacy to fulfill it. Then I visited phlebotomy for blood tests and had a second blood test at my gp a few days before my follow up with the nurse.

You will be told it is very important to not get pregnant when you are taking it because it can cause birth defects in a baby. I also had to prove I wasn't pregnant despite stating that I wasn't sexually active. They asked me to do a test every so often in front of them.
The first round of roaccutane didn't work for me but 1 and a half rounds was enough thankfully.
Very dry, sensitive skin.
I think I stopped taking it the second time round mid cycle because it had too much of a negative impact on my already bad mental health.
It doesn't affect people at all/as much but it did me. Thankfully I didn't need any more intervention.

Got mine prescribed from the pharmacy in the hospital as that's where the dermatologist was based. Also had all my bloods etc done there. To add I took it for 6 months and have great skin now. Goodluck to your DD!

Thanks all for your input. To the very best of my knowledge she’s not sexually active yet and she told me about the pregnancy tests which she found quite amusing 😉

My then 14 year old saw a private dermatologist - we are in Australia- and had a 8 month course in total, although quite low dose, I think. It took 4 months to work but her skin is amazing, no residual spots, pigmentation or scarring.

She didn’t have to go on the pill and wasn’t given pregnancy tests, but was informed that if she got pregnant she would be advised to terminate. She wasn’t (and isn’t) sexually active.

Apart from dry lips and hair there were no side effects and it was amazingly effective

In case this is helpful, I took Roaccutane in my 20s but unfortunately it didn’t work for me (skin was clear while I was taking it but acne returned as soon as I stopped). After much trial & error the only thing that keeps my acne at bay is anti-androgens, which I took in the form of the contraceptive pill Dianette and then when I was too old for that, Spironolactone, which I still take now in my mid-40s. She may have already tried anti-androgens already but thought I’d mention it as another avenue if the Roaccutane doesn’t work out. Good luck 🤞

Nhs