[split] Acitretin

[longtime sufferer]

Hey everyone new to this forum but not in regards to P.
I thought I would share my experience with you after starting Acitretin Aug 2014.
Suffered since age 12 and as a veteran of the vast array of meds on offer I am now at the stage of trying Acitretin. My P by the way is on the high end of moderate bordering on severe. Apparently, after bloods, cholestorol etc I am an ideal candidate. This is my second attempt at an oral drug as I reacted adversely to ciclosporin. I will share with you any side effects and effects on skin.
Day 1: 35mg Acitretin taken after breakfast, started to develop a pressure headache, foggy feeling and this didn't stop only respite is when asleep, nightmare.
Day 2: Same strict routine and again now a hazy headache not very alert, with a foggy feeling, after a nap feel brighter continued throughout day again nightmare.
Day 3: Headaches don't seem to be there today no pain and it seems the fogginess is going feel more brighter than last two days. Not sure whether related but my IBS flared badly in the am.
No significant change in skin or anything else will try and update again further along. However, I live in hope this treatment may help me but don't hold out much optimism considering years trying other treatments that have failed, anyway we will see.

Update: Day 6 tolerating drug so happy so far, skin has got bad quickly seems to be growing at an accelerated rate, hair is coming out (no im not bald but noticeably losing) but expected all of this. No headaches and feeling a lot better than at beginning.

Update: Day 12 hair is thinning and falling out getting me down now and dont know whether to stop drug am tolerating drug ok but hair falling out wasnt an option, lips are so dry and putting lip balm every half hour overall despondent not a happy bunny. Calling all Acitretin users present and past what should I do ? ;((

So sorry to hear you're having all these side effects. My dermatologist told me if I had headaches, I could reduce the dose to three times a week. You might want to ask your doc if you could reduce the dose to see if that helps.
Thanx Kat might phone them on Monday have u experienced hair loss?

[Kat]

Hey everyone new to this forum but not in regards to P.
I thought I would share my experience with you after starting Acitretin Aug 2014.
Suffered since age 12 and as a veteran of the vast array of meds on offer I am now at the stage of trying Acitretin. My P by the way is on the high end of moderate bordering on severe. Apparently, after bloods, cholestorol etc I am an ideal candidate. This is my second attempt at an oral drug as I reacted adversely to ciclosporin. I will share with you any side effects and effects on skin.
Day 1: 35mg Acitretin taken after breakfast, started to develop a pressure headache, foggy feeling and this didn't stop only respite is when asleep, nightmare.
Day 2: Same strict routine and again now a hazy headache not very alert, with a foggy feeling, after a nap feel brighter continued throughout day again nightmare.
Day 3: Headaches don't seem to be there today no pain and it seems the fogginess is going feel more brighter than last two days. Not sure whether related but my IBS flared badly in the am.
No significant change in skin or anything else will try and update again further along. However, I live in hope this treatment may help me but don't hold out much optimism considering years trying other treatments that have failed, anyway we will see.

Update: Day 6 tolerating drug so happy so far, skin has got bad quickly seems to be growing at an accelerated rate, hair is coming out (no im not bald but noticeably losing) but expected all of this. No headaches and feeling a lot better than at beginning.

Update: Day 12 hair is thinning and falling out getting me down now and dont know whether to stop drug am tolerating drug ok but hair falling out wasnt an option, lips are so dry and putting lip balm every half hour overall despondent not a happy bunny. Calling all Acitretin users present and past what should I do ? ;((

So sorry to hear you're having all these side effects. My dermatologist told me if I had headaches, I could reduce the dose to three times a week. You might want to ask your doc if you could reduce the dose to see if that helps.
Thanx Kat might phone them on Monday have u experienced hair loss?

No, I did have a headache the first day or two, but it was mild. I do get a bit of dry mouth and dry lips, but that was something I would get prior to the medicine. I'm just past the 3 week mark for being on Acitretin and so still waiting to see if it works for me. Crossing fingers for us both.

[longtime sufferer]

Update: Day 6 tolerating drug so happy so far, skin has got bad quickly seems to be growing at an accelerated rate, hair is coming out (no im not bald but noticeably losing) but expected all of this. No headaches and feeling a lot better than at beginning.

Update: Day 12 hair is thinning and falling out getting me down now and dont know whether to stop drug am tolerating drug ok but hair falling out wasnt an option, lips are so dry and putting lip balm every half hour overall despondent not a happy bunny. Calling all Acitretin users present and past what should I do ? ;((

So sorry to hear you're having all these side effects. My dermatologist told me if I had headaches, I could reduce the dose to three times a week. You might want to ask your doc if you could reduce the dose to see if that helps.
Thanx Kat might phone them on Monday have u experienced hair loss?

No, I did have a headache the first day or two, but it was mild. I do get a bit of dry mouth and dry lips, but that was something I would get prior to the medicine. I'm just past the 3 week mark for being on Acitretin and so still waiting to see if it works for me. Crossing fingers for us both.

Yes fingers crossed do you mind me asking what mg you are on mine is 35mg so quite a moderate dose

[Kat]

Update: Day 12 hair is thinning and falling out getting me down now and dont know whether to stop drug am tolerating drug ok but hair falling out wasnt an option, lips are so dry and putting lip balm every half hour overall despondent not a happy bunny. Calling all Acitretin users present and past what should I do ? ;((

So sorry to hear you're having all these side effects. My dermatologist told me if I had headaches, I could reduce the dose to three times a week. You might want to ask your doc if you could reduce the dose to see if that helps.
Thanx Kat might phone them on Monday have u experienced hair loss?

No, I did have a headache the first day or two, but it was mild. I do get a bit of dry mouth and dry lips, but that was something I would get prior to the medicine. I'm just past the 3 week mark for being on Acitretin and so still waiting to see if it works for me. Crossing fingers for us both.

Yes fingers crossed do you mind me asking what mg you are on mine is 35mg so quite a moderate dose

Mine is less, it's 25mg.

[Fred]

Don't know if it helps any but here are some of the side affects with Acitretin:

Very common:
Over 80% of patients experienced: hypervitaminosis A as e.g. dry lips and possibly inflamed lips (using moisturisers or 'emollients' from the start of treatment can help to relieve dry skin problems.)

40 – 80% of patients experienced: dry mucous membranes of mouth and nose, peeling of skin, especially the palms of the hands and soles of the feet, rhinitis.


10 – 40% of patients experienced: nose bleed, scaling and thinning of healthy skin with increased sensitivity, erythema, pruritus, sensation of “burning skin”, sensation of “sticky skin”, dermatitis, hair loss, inflammation of the nail wall, nail fragility.

Common:
Up to 10% of patients experienced: development of rhagades, inflammation of oral mucosa and gingiva associated with taste disturbances, blistering of the skin, change in pigmentation of the skin and hair, change in growth rate of hair, change in hair structure.

There are more side affects as there are with a lot of drugs, and sometimes knowing them all is not a good thing as it can put you even taking a headache pill. But those above look common, and it looks like you could be falling into the unfortunate category.

Sorry.

[Kat]

Don't know if it helps any but here are some of the side affects with Acitretin:

Very common:
Over 80% of patients experienced: hypervitaminosis A as e.g. dry lips and possibly inflamed lips (using moisturisers or 'emollients' from the start of treatment can help to relieve dry skin problems.)

40 – 80% of patients experienced: dry mucous membranes of mouth and nose, peeling of skin, especially the palms of the hands and soles of the feet, rhinitis.


10 – 40% of patients experienced: nose bleed, scaling and thinning of healthy skin with increased sensitivity, erythema, pruritus, sensation of “burning skin”, sensation of “sticky skin”, dermatitis, hair loss, inflammation of the nail wall, nail fragility.

Common:
Up to 10% of patients experienced: development of rhagades, inflammation of oral mucosa and gingiva associated with taste disturbances, blistering of the skin, change in pigmentation of the skin and hair, change in growth rate of hair, change in hair structure.

There are more side affects as there are with a lot of drugs, and sometimes knowing them all is not a good thing as it can put you even taking a headache pill. But those above look common, and it looks like you could be falling into the unfortunate category.

Sorry.

I've read that some side effects can be temporary. Specifically that hair loss is "usually" temporary with Acitretin. Of course the problem with that is everyone is different and one can't know if side effects will ease or stay present during the entire course of treatment.

I'd definitely talk to my doctor about the side effects. I've read that drugs are licensed when the side effects outweigh what they are trying to cure, only that is actually quite personal on what one would rather deal with imo.

[Fred]

I've read that drugs are licensed when the side effects outweigh what they are trying to cure, only that is actually quite personal on what one would rather deal with imo.

Yes that is the case, and like I say we should never read the whole list otherwise we wouldn't touch any drugs at all.

I just find sometimes it's reassuring to know if what one is experiencing is a side affect, and like you said they can and usually do pass.

I hope it passes for you Longtime Sufferer, and keep updating both of you as it is bound to be helping others.

[kh924]

I'm just starting my third week. Having the same issues. Very dry lips and just starting to notice hair in the shower. I'm also very thirsty. It's depressing that medications have side effects by my psoriasis was getting so bad I had to do something. Hang in if you can. There is a product called Toppix on the market to cover hair loss/thinning which I discovered when I had cancer and lost a lot of hair. Hang in there. I understand it takes about six weeks to see improvement on this med.

[longtime sufferer]

So sorry to hear you're having all these side effects. My dermatologist told me if I had headaches, I could reduce the dose to three times a week. You might want to ask your doc if you could reduce the dose to see if that helps.
Thanx Kat might phone them on Monday have u experienced hair loss?

No, I did have a headache the first day or two, but it waThanks s mild. I do get a bit of dry mouth and dry lips, but that was something I would get prior to the medicine. I'm just past the 3 week mark for being on Acitretin and so still waiting to see if it works for me. Crossing fingers for us both.

Yes fingers crossed do you mind me asking what mg you are on mine is 35mg so quite a moderate dose

Mine is less, it's 25mg.

Thanx Kat very helpful info it maybe that they put me down slightly, i was guided by my nurse saying 'dont worry you wont wake up bald' but the hair loss is getting a little out of hand so not prepared for that. I think I can deal with the other side effects and hopefully they will pass

[longtime sufferer]

I'm just starting my third week. Having the same issues. Very dry lips and just starting to notice hair in the shower. I'm also very thirsty. It's depressing that medications have side effects by my psoriasis was getting so bad I had to do something. Hang in if you can. There is a product called Toppix on the market to cover hair loss/thinning which I discovered when I had cancer and lost a lot of hair. Hang in there. I understand it takes about six weeks to see improvement on this med.

Thanx for your reply what mg do u take and are u seeing any changes in your skin ?