Week 12 - feeling miserable

Laura_
 

Laura_

Wednesday 09 July, 2008

Posted in Roaccutane Diaries

Hi everyone,

Well, I’ve just finished week 12.  It will be the start of week 13 tomorrow, my last week at 30mg before I start on 40mg.  I have definitely noticed the difference in terms of side effects since going from 20mg to 30mg.  The worst thing by far has been my lips.  They are now a complete mess.  I had some kind of reaction to a product and have now got spots/lumps all over them, especially around the edge of my top lip which was the most affected by the dryness.  They sting all the time and are extremely painful.  It seems like I have a rash but on my lips.  I think it was from puttitng some face cream on my lips.  Someone in a chemist advised me to put Avène moisture mask on my lips as well as my skin on my face and I think this is what caused it.  I had a dermatologist appt today and she has prescribed me some cortisone cream to use on them.  I am feeling rather desperate and down.  I had already had enough of the extrememly dry peeling lips that nothing could fix (NB I didn’t find the nipple cream did anything at all).  To make things worse, I started a new job last week where there is permanent air con - not only am I freezing the whole time but I find it drys out my eyes and lips further.  So the reaction my lips had to the face cream, really isn’t what I needed.  I didn’t go into work today because they hurt so much and I was in such a state emotionally.  I am going to have to go tomorrow but they look and feel so terrible, it is going to be tough.  I thought the dry and peeling lips were bad but spots and lumps are 10 times worse!

My derm was far from sympathetic.  Despite me being in tears as I felt at my wit’s end, her attitude was basically pull yourself together and be stronger.  She said you’re only on 30mg, that’s not much, it’s a strong drug, you’re bound to get side effects but you have to deal with them.  I’m well aware of this and have been doing so up until now but the weird reaction on the lips, was just  too much.  I just hope the cortisone cream get’s rid of it.  I have to be careful though and not apply too much.  I can’t believe, I’m now looking forward to getting back to managing the extremely dry lips!

I’m just finding it’s all getting on top of me at the moment - I think the stress of a new job hasn’t helped.  I live alone too and don’t really have anyone to talk to about things (not many people know) and I live abroad from my family.  I might confide in a friend soon I think though because it’s difficult dealing with it alone.

I hope I can get the lips under control - the other side effects have been manageable for me.  I can control the dry skin with lots of good moisturisers and the hand rash isn’t bothering now that I have the lip crisis! The dry eyes are also not bad in comparison.  I am very very tired, but again, that’s not bad really.  The no alcohol problem also doesn’t even seem like a problem anymore!  I just want the lips to get better!

Anyway, sorry for the really negative post but I that’s how I feel at the moment.  I hope I will be able to be more positive next time.

Laura  

5 Responses to “Week 12 - feeling miserable”

#1 Lou says...

Hi Laura sorry to hear your feeling so down, I know how you feel it does get to you sometimes, Im on week six and look sooo bad, bright red, patchy and still covered in spots-delightful.

My lips went bananas too, they kind of bubbled up in little blisters, the outside of my lips was bright red and rough and skin fell off leaving me with red raw patches, even though i used lipbalm constantly. I used cortisone cream and it does work! I applied it all day for a about a week, I don’t think you have too worry too much about the amount as you won’t be using it for ages and ages. Basically when I would have put lip balm on I slapped on a layer of cortisone cream, and within about five days my lips were better- still obviously in need of lipbalm, but normal looking hurrah! Hope yours get better too.

Lou x

July 9th, 2008 at 5:08 pm

#2 Anonymous says...

hiya, we are at the same point in the treatment, so know exactly how you feel. It will all seem to be ok for a while, side effects wise, and then start up again worse than before, like the tablets are just reminding you that they are there.
I am on 50mg, and have been all the way through and can’t wait for it to be over. The lips are just the worst problem as in the last week I have keep reapplying one of many products every 15mins to stop them burning.
Like you, I just want the lips to be normal again. The sides of mine split and I found nivea sos lip balm to be quite good and e45 cream for the rash at the sides of my mouth. All so pretty when you have constant white lips.
Hope the side effects ease up for you soon
laura x

July 9th, 2008 at 6:28 pm

#3 Nina says...

Hey Laura,

Really sorry to hear you’re having a hard time and an unsympathetic Derm isn’t what you need is it! Anyone that trivialises the Roaccutane experience has clearly never been through it!

I’m on week 19 and will be finished in 6 days. I have hated having sore, dry lips… i took some comfort in knowing that all the other people on here could totally relate - we all seem to suffer a lot from this side-effect. Not fun at all! Improvements also came and went several times before settling… i was at my lowest between weeks 8-12 and was SO miserable but you’re now at a point where hopefully things will start to look up soon :)

If it’s any consolation, i have just started a new job today and had AWFUL and HUGE cracks at the side of my mouth which i know will have been noticed.

Stick it out, keep your chin up and if i could pass anything on it would be that’s it’s been 150% worth it :) My skin is spotless (but not quite ’scabless’ ;) for the first time in years!

Good luck, not too long now :) xxx

July 9th, 2008 at 7:38 pm

#4 Nikki says...

I can relate to the living alone thing. Taking a course of roaccutane is a big deal, and going it alone has perhaps been my toughest challenge of all. Thats why I appreciate this site so much but its still not the same as having people around to support you I guess. And despite what your derm says you ARE strong, just to be doing this alone. All the best x

July 9th, 2008 at 10:51 pm

#5 Laura_ says...

Thanks for your comments guys. It’s so nice to hear from people that understand! Each one of you said something useful that hit home.

Lou - my lips are exactly as you described! The order was red patches all over from where the skin had peeled off in different places, then very red around the outside, then progressively worse until all the little blisters appeared everywhere, especially around the edges. Glad to hear the cortisone worked for you. Fingers crossed it will work for me. I might start putting some more on because I have only been putting it on twice a day (as advised). I didn’t want to disobey the advice from the derm and end up doing more harm than good! They are a little better today than yesterday - fewer blisters! Hopefully the trend will continue!

Anonymous ;) - applying one of a sack full of products every 15 mins sounds familiar, as do the white lips! The products I am using at the moment do leave you with white lips and when I’m at home I slap it on but in the office it’s a bit more awkward. I have to try to apply a very thin layer with a cotton bud - lots of trips to the toilet! But they are so sore at the moment it hurts to touch them at all.

Nina - yes, I did feel like saying to my derm “have you ever been on Roaccutane?” She also gave me a telling off for buying loads of different products and listening to advice in chemists, saying I should always ask her. Problem is she doesn’t ever return my calls - grrrr! Unfortunately, I have a way to go yet, at least 4 mths I think - but hopefully it will all be worth it in the end.

Nikki - nice to hear from someone going it alone too. Thanks for your comment - it was really sweet.

Thanks again to all for your comments.
Laura x

July 10th, 2008 at 3:20 pm

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