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Cystic Nodular Acne

(8 Posts)
OhLoopyLoo Wed 03-Aug-11 15:14:30

My first post and I am desperate please. My 19 year old daughter has suffered with acne for the past 8 years and both the GP and hospital dermatologist have tried every antibiotic, gel, cream, lotion under the sun with minimal success, except Roaccutane. In the past 5 months her acne has developed into cystic nodular acne; she is just about to give up on everything in her life and I don't know what to do. The huge lumps on her face burst during her sleep and she wakes up to find her face stuck to the pillow case, or worse still when she sometimes eats a meal they burst and leak a bloody liquid down her face. She has now been referred back to the hospital dermatologist for Roaccutane, but as the wait is so long she is is tonight seeing a private dermatologist. I am not worried about the Roaccutane, her life is more important and she is insistent that she cannot live life like she is anymore. I need advise so I can support her when she lets me (yes she is 19 now), but sometimes its all to much for her and to see her so distressed by the many red scars on her face that only I am allowed to see. I feel to blame as I had acne from the age of 11 until I had my daughter at 34. What more could I have done? Why haven't the doctors done more, earlier to help her? Will the scars ever go from her face, will she ever not have to cover her face with foundation to hide the scars? If anyone has been through this PLEASE tell me how I can help her. If I sound down it is because I am recovering from an operation, followed a week later by a fall downstairs and now on crutches and pending redundancy (4th time around). The only thing I feel proud about is helping her through her school years to get to university. Thank you

Theas18 Wed 03-Aug-11 16:00:21

Take a deep breath and one step at a time! Ds (15) now getting ome improvement after ? 3 months roacutane but it's been a long haul. Main side effects dry skin cracked/ bleeding lips and muscle aches ( he's v sporty).
If the wait will be long can you persuade your GP to discuss dinanette? This is a contraceptive pill also licences for acne. Less side effects than roaccutane.
Private roacutane is a bit of a £££££ route. We could have afforded the drug costs at £1/ pill approx ( though he's now on 3/day) just. But the dermatologist wanted £150 for every flippin review appointment plus cost of blood tests etc.

louby86 Wed 03-Aug-11 16:22:50

My doctor put me on dianette when I was 14 and it really helped my acne. I went to a private sk:n clinic for an assessment too to make sure I was using the right products for my face and was not aggravating it. There is a myth that people with acne don't have dry skin because the excess oil produced helps to cause the spots but mine improved when I used a kinder facewash, stopped using facewipes and started using an oil free moisturiser. If you want to PM me and I'll send you a list of the facewashes etc I was told to buy as you can pick most of them up in boots

Maryz Wed 03-Aug-11 17:25:33

Message withdrawn at poster's request.

Schtum Thu 04-Aug-11 07:57:22

Loopy

I'm so sorry to hear about this awful condition and about how it is affecting you poor daughter and you.

My DD17 developed acne at puberty. I had her straight to the GP because she was upset and neither of us wanted her to scar. We have been backwards and forwards umpteen times with various treatments -topical and oral - until we finally arrived at what works for her..

Here's what's working for her:

1. She takes Dianette and a low-grade antibiotic called something like "lymocycline" ( the first - cheaper - antibiotic had no effect so don't give up on antibiotics altogether if the fist one doesn't work, would be my advice).

2. At night : she removes make up at night be smoothing approx 1tsp extra virgin olive oil over her face then going over her face with a hot damp flannel (clean flannel every night). She then washes her face twice with clinique's anti-blemish cleansing bar to remove all traces of the oil. She swipes over her face with the Clinique anti-blemish toner and then applies a small amount of the Clinique anti-blemish oil-free moisturiser

3. In the morning, she washes twice with the bar and uses the moisturiser again.

4. Twice a week she washes her face with Panoxyl benzyl peroxide wash and puts an aspirin mask on for about ten minutes.

* Google "Aspirin Mask" - there's loads of info - but basically you crush up a few aspirins, mix with a few drops of water in the palm of your hand and then smooth the grainy-feeling paste over your face. It contraindicated salicylic acid which gets rid of dead skin cells.

I suspect it's the two tablets that keep things under control but her skin care routine must help too because she can still have a (minor) breakout if she doesn't adhere to the routine.

Hope this may be of some help.

Best wishes to you and your DD.

catwalker Thu 04-Aug-11 10:58:34

Loopy - as a long term severe acne sufferer from my mid teens to my mid thirties, I really do sympathise with your daughter. And I sympathise with you as I'm just waiting to see if I've 'passed on' the curse to my own kids.

She is lucky in that you understand what she's going through and are willing to help her look for treatment. I had years of people trying to downplay my acne and convince me it wasn't as bad as it clearly was.

Antibiotics worked for the first year or so for me, but thereafter, were ineffective. I went 'cold turkey' in my twenties and didn't take anything but wasted loads of money on homeopathic rubbish (and thick foundation!). I was finally referred to a dermatologist in my late twenties (I can't believe, with hindsight that it took so long) and prescribed roaccutane. It worked incredibly well, though I did end up having to take it twice as my acne eventually came back (though less severely) after the first course.

I'm sad your daughter couldn't be seen earlier on the NHS, but I am sure Roaccutane will work for her. It really is very effective. I wish more people understood the devastating effects of acne. I know Roaccutane sometimes gets a bad press and has been linked to suicide in young men. But when I think how suicidal I often felt when my acne was really bad.....

One word of caution. When I took my first course of Roaccutane, my acne got worse during the first week so don't be alarmed if this happens. After a week, everything dried up and my skin began to clear. Do let us know how your daughter gets on.

annalena Thu 04-Aug-11 12:38:26

Hi Loopy,
Like the previous poster, I too suffered from severe cystic acne during my teens. Nothing worked, and I know first hand the pain your DD is going through.
I started on Roaccutane when I was 17, and it was life changing for me. It cleared my acne completely, and for the first time I felt like a normal teenager and was confident enough to be myself and not hide from people. In my mid twenties (after pregnancy) I had to go on the drug a 2nd time, but since then all is well (I'm 40).

Currently my DD14 and DD17 are both taking Roaccutane. We started them on it at the first signs of problem acne (I couldn't bare for them to suffer like I did).

In summary, don't think of Roaccutane as a bad drug. It was designed for people like your daughter. She will feel so much better about herself when she starts to see the results. Good on you for getting her this help!

Wishing your DD all the best!

BilboBloggins Thu 04-Aug-11 12:46:16

I can only add my support of roaccutane if there is any way you can get her on to it.
I suffered from acne my whole young adult life - only tried roaccutane at 33 years old! It worked in 4 months and I only now get an occasional pimple. Nothing to speak of really.

I took Dianette as an older teen and it did work, but I was taken off it at 30 because I had been on it too long and it does carry risks of thrombosis in older women.

I feel so sorry for your daughter, and wish her all the best with getting a treatment that works.

Oh, if she does go on to roaccutane, I found Elizabeth Arden 8 hour cream fabulous for the dry lips and inside my ears.

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