Acitretin Anxiety

[Millero86]

Hi all, new to the forums, and hoping that you may be able to answer some of my questions to help with my anxiety re Acitretin.

I am a 30 yo male who has been suffering with Psoriasis since I was 19. This was mainly plaque psoriasis on my elbows and knees but when I was 25 i developed a major case of guttate following tonsillitus. I went for UVB treatment for this and it cleared all the Psoriasis up. Unfortunately within 6 months the plaque had returned and another strep infection 2 years later caused another bout of guttate. I went for more UVB treatment and the same cycle repeated itself to where I am today.

I went through major depression following my first bout of guttate as it covered me from head to toe. I was much better the 2nd time round as I understood the condition, and it wasn't as severe as the first time. I treat my plague with Dovabet but this this little to the guttate scales. I wouldn't consider my Psoriasis to be having a detrimental effect to my life; it's annoying it's there but I can live with it!

I went to see the Derm today regarding my Psoriasis as the patch on my knee is growing and I have developed two patches in my groin area that I have never had before (ironically one looks like the male 'bits' - Psoriasis is mocking me now?!  ) - I am going on holiday in March and would prefer to have a clear body rather than it be there. Rather than refer for UVB he has asked me to take Acetritin 20mg per day. I was initially game for this but I've since read horror stories about Acetritin and one thing is particularly worrying me - hair loss! Call me vain but I really like having hair and it's something I will try hold onto if I can!

Am I thinking too much into it or is this something I should be worried about? I was thinking about taking Biotin to try and counteract the effects but it's unclear if this will help or if it will have an effect on the Acitretin. 

Any peoples experiences with this would be appreciated. From reading 20mg is a low dose compared to what others have been taking anyway?

Thanks in advance.

[Sandra]

Hi and welcome.
UV treatment in my experience does help to clear psoriasis but only for a short period of time. I can certainly empathise with going on holiday and wanting to be clear, however you might find the sun actually helps, if you can face uncovering.

So I have taken Acitretin. This initially for me was a fantastic drug and cleared the psoriasis really quickly.

I suppose the thing to remember is that all drugs have side effects, even paracetamol! We all react differently to the same medications so it's difficult to know which ones you may experience or may not.
For me I had to come off Acitretin because I experienced migraines and a couple of others, however I still have a full head of hair!

I am now on a very new drug (Apremilast), I can honestly say that even though this drug has potentially serious side effects, so far I have only experienced a couple of the more common ones and these were manageable and as time has gone on barely bother me now.
I guess what I'm trying to say is only you can make the decision to give it a go, I personally (which everyone on this forum will tell you) took years to decide to give the drugs a go. I am so very glad I did as I sit here today with now over 90% clearance.
There are threads on Acitretin so you might want to have a read of those and discuss with others who have more knowledge than I have.
Good luck
Sandra

[Kat]

I was on Acitretin and it worked well for me. Sadly the only way you know if you'll be affected by side effects is to give it a try.

If I had hair loss, it wasn't enough to notice if that helps any. I'm a bit older so my hair has thinned some anyway, hence why I wouldn't have noticed if it was a little, but there was no significant side effects for me while on Acitretin.

[JohnB]

Hello and a warm welcome to the club  

I've been on Acitretin since April and I am very pleased with the results so far. Yes this stuff does have some bad press, but then again so do all the other treatments. Even UV is not without its faults.
For me some of the side effects could be concidered severe if you were of the mind to deem it so - the peeling of the hands and feet were something to behold. I am only just tentatively  and cautiously hoping this has now receded the side effects started to show their ugly side about three weeks into the treatment at 25mg. I am currently on 30mg . I still do suffer from dry lips but not to the tune of a stick of lip balm every fortnight as it was at its worst. As for the hair, my hairdresser has noticed a thinning of the hair but no loss and it has recently started to curl. My Eye brows have lost some body but I am fortunate in never really having been body concoius.

It is really difficult to say wether you will see any side effects or even how bad they will be. One thing this site has tought me is that every body is so different, rarely do two people have the same effects to the same levels.

All I will say is give it a go. I think the benefits far outway any of the side effects (apart from migrains)

If you need to know more please ask, I will do my best to answer truthfully although it may take a short while its a bit manic here at the moment
JohnB

[jiml]

Hi and welcome    I can't add anymore to what's already been said, except that you have found a great place for advice and support . I agree that it's worth a try and you will probably be fine on it, and if you do start to experience hair loss, you can always stop it and ask for something else

I look forward to hearing how you get on with acetretin

[elpuno]

welcome! i am on acitretin for 2 months, started with 30mg per day and after 6 weeks reduced to 20mg per day. after 6 weeks i had the first really good results. at the moment i am very happy with it, hope to reduce the dose in 2 weeks when i meet the derm again.

there is one thing that john said: One thing this site has tought me is that every body is so different, rarely do two people have the same effects to the same levels.

and that is the truth. so give it a try and stay positive!

[kh924]

Hi Millero86, welcome to a safe place. You're among friends. I have been on the medication over two years. I have experienced hair thinning, hair loss, dry lips and occasional peeling on my hands but it has cleared me for the most part. I do notice changes when the weather gets dry in the winter - it gets a bit worse. I got psoriasis at age 50, tried dietary changes for a while first and then gave in to oral medication.

I understand the hair loss stress. It is very difficult regardless of your gender. Check out a product called Toppik if you haven't already ( Google it). Works great.

Keep us posted with your progress. if you have questions. please ask
Kelly

[Millero86]

First of all thanks for all your replies and the warm welcome. I wish I found this place when I was younger and suffered with borderline depression due to my symptoms.

Back to the Acitretin - I was in a position where my mum works in a Drs surgery with an experienced derm so asked for some further advice. I felt much better - they explained the hair loss and some of the other more severe symptoms are rare so I bit the bullet. After just over 2 weeks , I noticed some side effects which seems to be normal and not getting noticably worse - dry lips and knuckles, minor wrinkling on my fingertips, I seem to be quite thirsty a lot of the time too? The guttate on my hands seems to becoming more 'plaquey' if this make sense and the patches of plaque seem to be a lot worse - after exercise my plaque used to smooth off for some reason but now it doesn't change at all. The patches on the inside of my legs felt quite sore recently too. I had some minor nausea in a morning when travelling to work which quickly subsided (normally when I've had eggs for breakfast?) and one day with a severe headache but I'm not sure if these were related. 

I've been combatting some of the side effects in several ways - 
I've been exercising a lot more and watching what I am eating - I've tried to change my lifestyle as much as possible, unfortunately I do enjoy a good drink but I'm more conscious about how much I am not drinking. I'm not sure if this is a side effect but I seem to be building muscle quicker? I quit smoking last year too and chnaged to an E-cigarette so I'm feeling ym fittest in around 2 years at the minute!
Diprobase - using this as a shower gel every morning and following the gym. I've never been a fan of creams as they stick to your clothes, however by lathering on the diprobase thick a few minutes before a shower then washing off in a morning it seems to be working ok. I've also used this on this inside leg latches when they felt sore. I can see this being important in the coming months.
Dovobet gel - The consultant I saw tried to get my Enstiler (not sure if I spelt it right) but my GP prescrbed Dovobet gel for use. I've always hated Dovobet regardless if it's cream or gel so I've used this sparingly so far - I had a bad rebound of steroid creams so try to avoid if possible. 
Vaseline Aloe Vera lip balm - I think a combination of Acitretin and the cold UK winter setting in has had a bad effect on my lips - this has been a life saver. I've had some minor cracking but the Vaseline has been ace so far.

kh294 - thanks for the advice on Toppik - I think this is an American brand so I will see if there is a UK alternative. The derm said that as a healthy 30 year old that unless I have a bad reaction to only expect minor thinning but I'm getting to that age where I need to start taking care of my hair!

My initial anxiety has disappeared and I'm feeling very positive about the future on Acitretin. A few questions - I am going to Thailand in March for my best friends wedding, for people who have taken/taking Acitretin, what was your Psoriasis looking like after 4 months on Acitretin? The derm told me that they normally combine Acitretin with UV treatment with good results, has anyone had any experience how Psoriasis reacted to natural UV? I tan really well when I use suncream (SP15 upwards) but when I don't use I burn really bad so I'm already researching suncreams.

Sorry for the long post!

Thanks

[JohnB]

Hi millero86
Just read your post sadly stuck in work at the moment and not out till late but will post tomorrow.

[Kat]

Acitretin is slow working and it's not unusual to get worse before it starts to improve. I would think that in 4 months you will have noticed an improvement, but I do think that can vary greatly by individual. It was around the 2-3 month period for me to notice improvement and then things improved quickly. I did do light therapy while taking Acitretin so I never really knew how much one helped over the other or if it was the combination that helped to get things going in the right direction for me.

Thailand sounds like fun!