10 replies to this topic

[LipstickArtist]

Hey everyone, I'm a newbie...been visiting the forums since around April but never actually got around to posting anything!

I'm a 24 year old girl and I started taking Roaccutane (I'm from Scotland) on the 24th of May, so I have a month or two left of treatment. Basically I've came to a crossroads thats made me wonder if I really want to continue taking this drug as the side effects have just escalated in the last month or so. I'm 8st, or 112 lbs, and 5'3 was on 20mg for the first month then been on 50mg ever since.

No doubt, its cleared up my skin a lot, so it definitely does what it says on the tin so to speak, but I'm just realising it does a lot more than just that! My first two months or so were manageable, the usual dry skin, MAJORLY dry/cracked/bleeding lips and dry eyes, so much so I'd go into work and people would ask if I was hungover...personally I think the bloodshot eyes makes me look like a junkie! So not pleasant, but definitely tolerable. Much the same as most of you I've gathered. However the last 3/4 weeks for me have been awful, and I really feel like im struggling. Mainly, I feel EXHAUSTED. I'm sleeping 12/18 hour days...if I set an alarm I'll sleep right through it, and getting up is so, so difficult. I have no energy whatsoever, no compunction to do any every day tasks. I've been missing classes because I sleep through them/my alarm/don't wake up in time. Even when I do, I have no motivation to get up and go! Its like really affecting my day to day goings on, I'm not sure how to tackle it, make myself more awake?! I've obviously tried coffee, energy drinks etc but they just make me crash even harder, not worth an hour of feeling normal! I tried to get an appointment with my GP last week but there's a 2 week waiting list for appointments! I have the worst doctors surgery ever. So, I have a derm appointment on Wednesday so i thought I'd just wait until then. I'm not really sure what to do, as i cant keep missing classes or I'll mess up my course this year. I've missed work as well so thats causing me all sorts of stress! I'm not sure what the derm can do for me, or if they'll advise me to stop the treatment.

As well as the crazy fatigue, I've been getting loads of god awful side effects into the bargain, some which i accept are part of the bargain of Roaccutane drying your whole body out essentially, others scare me a little!

Side effects I'm having:

Dry eyes (sensitive to light and cant see very well in the dark..my eyes seem to be blurry first thing in the morning and take a while to go away)
Dry peeling skin generally
Dry lips (ugh) !
Dry mouth
Headaches on and off
Joint and back pain (i feel like a 80 year old lady! hurts like hell getting out of a chair)
Fatigue as mentioned
Moody and irritable
Constipation and bloating
Appetite changes
Rectal bleeding
Heartburn
Nose bleeds/congestion
Constantly feel cold (think its because im always tired)
Trouble concentrating
Memory problems ( feel like a total airhead, i forget things mid sentence )
Feel weak in general, stiff muscles/joints
Mouth ulcers on the gums and tongue

I've started to get a full feeling, like pressure in my ears, they pop all the time as well, don't know what up with that! Also lying in bed the other night i had pressure in my head, a sort of foggy pressure and one side of my face felt like...numb, like a cross between pins and needles and total numbness. I was pretty freaked out, one of the reasons thats making me worry that it might be one of the more severe side effects. Has anyone else ever had that, is it something to worry about?

I love what accutane has done for my skin and self esteem. I just don't know if I can keep taking it as its basically preventing me from going about my daily routine as I'm so exhausted!

Does anyone have any advice?

x

Edited by LipstickArtist, 24 September 2012 - 07:43 PM.

[tuffluck]

Im not a doctor but I think you should really stop taking that stuff.

[LipstickArtist]

Thanks for your input guys, i'm seeing my derm tomorrow so hopefully I can get this straightened out! Sitting at home with a migraine at the moment, not fun!

Yeah, my skin has cleared up massively, still a little pigmentation but I'm 'hoping' it'll subside sometime soon! My gut says i should stop as my head just doesn't feel right, but I really want to keep taking it as I'm nearly finished! If you stop your course early, does that affect the results, is the acne more likely to come back?

[real maverick]

I would personally continue my course, unless my Dr suggested otherwise. You need to speak to him, explain your concerns. Nothing you've said, sounds out of the ordinary, they are just regular Accutane side effects.

If you come off your course early, there is a much greater chance your acne will return.

Personally, I'd have suffered any amount of side effects, for clear skin. But as I say, speak to your derm or Dr before making any decisions.

Good luck.

[ajab561]

I know others have said to wait and talk to your doctor or to stick it out, but a few of the things you mentioned are really concerning to me. The general dryness, fatigue, joint pain, occasional headache etc. are obviously very common and expected. We suffer through these effects because they reverse themselves after stopping, and the clear skin is worth it. However, the fact that you're having rectal bleeding, constipation, bloating, and other GI effects could mean that the Accutane is causing irritable bowel syndrome which can be very serious and does not always reverse itself after stopping. Also equally concerning to me is the mental effects you're having. I'm not sure if you're familiar, but in the US we have what's called the iPLEDGE program. The card that comes in the booklet says right on the back: "Stop isotretinoin and call your doctor right away if you have any of the following signs and symptoms of depression or psychosis: -Start to feel sad or have crying spells. -Lose interest in activities once enjoyed. -Sleep too much or have trouble sleeping. -Become more irritable, angry, or aggressive than usual. -Have a change in your appetite or body weight. -Have trouble concentrating. -Withdraw from your friends or family. -Feel like you have no energy. -Have feelings of worthlessness or guilt. -Start having thoughts about hurting yourself or taking your own life. -Start acting on dangerous impulses. -Start seeing or hearing things that are not real." Just one of these symptoms warrants stopping the medication immediately. You have several. Accutane is a wonderful drug. I'm on my second course and I really believe in it. But if I ever had any of the mental side effects or the GI side effects that you described, I would immediately stop. Please stop taking the medication until you can see your doctor. It's not worth the irreversible effects. If you decide to continue, stopping for now will not affect your course as the medication stays in the body for quite a while.

[LipstickArtist]

I seen my derm today, they've taken me off the drug a month early as soon as I told them about the headaches and the pressure I was feeling in my head along with my vision blurring and nausea! I'm feeling quite ill at the moment, they haven't really done much for me! Disappointed with the NHS! They done an eye exam to check for swollen optic nerves I think but apparently my eyes are normal. I was just told "oh its a virus" and sent away really. I'm still sitting with severe headaches and feeling pretty out of it in general! Unsure what to do, if my headache doesn't subside in the next day or so I think I'll need to go back to the hospital and demand help!

[determinedtowin]

Sorry to hear your side effects. How has your acne responded to stopping Roaccutane? You're right about the NHS, they are hopeless!

[LipstickArtist]

Thanks, me too! Hoping they don't amount to anything or get anymore serious. I've been getting a few outbreaks but nothing too bad, hoping it stays this way as I can handle a couple of pimples compared to what i had !! Yeah, down with the NHS they get you in and out the door as quick as possible!

[oli girl]

Thanks, me too! Hoping they don't amount to anything or get anymore serious. I've been getting a few outbreaks but nothing too bad, hoping it stays this way as I can handle a couple of pimples compared to what i had !! Yeah, down with the NHS they get you in and out the door as quick as possible!

Get your thyroid checked if things don't improve. Accutane is known to mess with hormones and thyroid. Also might be good to invest in some supplements and eat healthy. If you exercise please continue. Good Luck!