Acitretin Anxiety

[Ever-hopeful]

I'm going to see derm next weds so will talk about increasing the dose. I really hope my hair doesn't start falling out!! It's only just grown back properly after Chemo 18 months ago! Think that'll definitely be the end of Acitretin for me if that happens!
Just want to say what a supportive (and informative!) forum this is. I've read about so many members' real battles with their skin............it certainly helps to make you feel less isolated as it seems that others really don't understand the psychological effects of psoriasis.

[JohnB]

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

Hi millero86
Firstly I must apologise, I did promise to answer earlier in the week but unfortunately for me I've been laid up with the dredded Lurgy. I looks like the others have answered with pretty much what I would have said. This stuff is a verry slow burner. I ve been on since April, I still have some small patches all ove my legs, but I dont itch anymore. I have just seen my hairdresser who had noticed a significant change in my hair. It has got thinner but hasnt shed and she feels it will recover in time.
Like yourself I have dry lips nad have recently gone worse, so I am back to eating Nivea lip balm.

Thailand sounds really good but I would be very careful in the sun. If you are anywhere near to being sensetive this stuff will make you burn even quicker. I would strongly recommend using a good quality sunscreen that has both high factor UV A and B. Don't go for any more than a factor 30 though its not worth it. Surprisingly factor 50 only gives you an extra 1% protection over factor 30 and it is not unknown for the active chemicals to cause skin irritaion in some people. A colleague has done a lot of research on the stuff. He used to use Nivea until they changed the formula.

Oh by the way, never worry about posting long stuff we all need to some time.

[Ever-hopeful]

After a visit to the dermatologist today I've now been taken off Acitretin as my feet are cracking so badly at a very low dose that it's unlikely I'd cope with an increase. The plan now is to start cyclosporine, if bloods are all ok. I'm trying not to read too much about potential side effects at the moment. I think I'll need to move to a 'cyclosporine anxiety' thread now! Good luck to the rest of the Acitretin gang - hope you see some improvements soon 

[jiml]

After a visit to the dermatologist today I've now been taken off Acitretin as my feet are cracking so badly at a very low dose that it's unlikely I'd cope with an increase. The plan now is to start cyclosporine, if bloods are all ok. I'm trying not to read too much about potential side effects at the moment. I think I'll need to move to a 'cyclosporine anxiety' thread now! Good luck to the rest of the Acitretin gang - hope you see some improvements soon 

That's a shame ..but if it's causing problems it's probably for the best

I wish you better luck with cyclosporine and hope it works well for you

I look forward to hearing your experience

[Kat]

Sorry the Acitretin didn't work out, hopefully you have better luck with Cyclosporine.

[Ever-hopeful]

Thanks Jim and Kat. Will keep you updated 

[Caroline]

Thanks Jim and Kat. Will keep you updated 

But the West-Midlands are UK right?
Then you might also go for Fumaderm at least that should be one of the possibilities to discuss.

[Fred]

Sorry it didn't work for you. It can take a while to find the right treatment as we are all different and there is no one suit fits all with psoriasis.

Good luck with your choice, and yes don't hesitate to start a new thread.

[Ever-hopeful]

Thanks Jim and Kat. Will keep you updated 

But the West-Midlands are UK right?
Then you might also go for Fumaderm at least that should be one of the possibilities to discuss.

I keep being told that because I had treatment for breast cancer 2 yrs ago, the options are very limited. I got the impression that in terms of oral treatments, Cyclosporin was a 'last chance saloon' for me?  I will definitely discuss this further though as am due back in 2 weeks and haven't started anything new yet. So thank you for the info.

[Caroline]

Thanks Jim and Kat. Will keep you updated 

But the West-Midlands are UK right?
Then you might also go for Fumaderm at least that should be one of the possibilities to discuss.

I keep being told that because I had treatment for breast cancer 2 yrs ago, the options are very limited. I got the impression that in terms of oral treatments, Cyclosporin was a 'last chance saloon' for me?  I will definitely discuss this further though as am due back in 2 weeks and haven't started anything new yet. So thank you for the info.

Oh, that is heavy. My mum has had that also.
But in that case you should read Dimethylfumarates and Angiogenesis
And you should certainly read more about Cyclosporine, this is not one of the sweetest approaches.