Mon-14-05-2018, 20:03 PM
(Sun-13-05-2018, 23:31 PM)wooleyb Wrote:(Wed-02-05-2018, 22:52 PM)Kentpatient Wrote: Hello. I have just been diagnosed with psoriasis at 50, prescribed Acitretin: pick the medicine up tomorrow as it wasn't in stock today and I am worrying about the side effects. I have psoriasis really badly on my scalp, all over my face bar my chin (it is red and blotchy and then goes deep red and blotchy and my eyelids peel constantly), both arms, less prominent on my chest and back and a dozen or so plaques on my legs. I literally woke up on 08 March with sore red eyes and by 21 March I was covered. I am worried about the fact Acitretin can make the rash worse: I feel that if it does get worse I won't be able to cope with it. I am using protopic on my face and diprosalyic acid on my body as well...will those topical ointments help to stop my psoriasis worsening when I start the Acitretin?
Does anyone have any experience about whether the worse it is to start with the worse it gets?
I am due to go on holiday for a short break on 21 May to Cyprus, booked before this happened, but am wondering if this is a good idea..the dermatologist was very laid back and said go if you want to but he also did not mention much about the medication making things worse initially. Does anyone think it might be advisable not to go?
I have already had two weeks off sick whilst waiting for a diagnosis because commuting in to London in the cold weather was unbearable and people were staring at me as my face peeled (and someone on the train asked if I had scarlet fever). I only started my job 6 months ago and am dreading taking more time off but equally am concerned about working if it makes my psoriasis even worse. Sorry to be so negative but I am really concerned and welcome any advice from others who have experienced Acitretin. Oh and really worried about hair loss...it has already got thinner with the scalp psoriasis.
Hey..... sorry I am late to all of your recent news, welcome to the club by the way - brilliant bunch of people on here, who helped me so much more than they will ever know!!
So I was diagnosed just over a year ago with pustular psoriasis - totally out of the blue too, so I can relate to you getting psoriasis later in life and the shock that this brings..... I started acitretin around August last year after much persuading - I won't lie, I was also terrified after reading all the side effects and was extremely reluctant to go onto acitretin - main reason hair loss!! I thought I could cope with the other side effects, dry mouth, sore lips etc but the hair loss was my biggest worry by far! So I started PUVA (light treatment) in July last year and then after a month started acitretin alongside this so my body was used to it by the time PUVA finished (which was October). To date I have had great results and none of the side effects that are listed, which as you will appreciate was the best news I could hope for...... I know it isn't the same for all, I appreciate that totally but give it a go and if it isn't working go back to your Derm, things did get worse for me before they got better I have to say but I have persevered....
Fast track to now and I am still on 10mg of acitretin and still feeling ok, I get the occasional lower stomach pain but I can't really attribute that to acitretin if I am honest, just coincidence I think..... I haven't stopped drinking (you will see me pop up in the Psoriasis Club bar from time to time), I am having appointments every three months but so far so good!
I went on holiday late January to Morocco and got some much needed sunshine - oh wow it did my skin the world of good - I was extra careful though and put a much higher factor sun cream on but not only did it do my skin the world of good but also my sanity!! I think everything that had happened since I was diagnosed was getting me down and I was constantly thinking about psoriasis all the time made me so stressed out it was making everything seem much worse than it actually was...... I can relate in part to the shivering but really think that was stress not just with psoriasis but my job is pretty stressful too and think it was probably more to do with my job than the medication!
I know it is so easy to say don't worry too much about the side effects but like other people have said on here, if it isn't working for you can stop it and try something else (we are all different and different medications work for some and not others), but in the meantime go and enjoy your holiday, if not for the sunshine but just to give yourself a break - sounds like you need to catch a break and a holiday could be just the thing to help you relax a bit, like I said, it did me the world of good.
Hope this helps a tiny bit but if you need any help or support you know you are in the best place for that right here or give me a shout if you want....
Like the others have said on here go and enjoy your holiday and get some rest and relaxation, just be sensible in the sun (which is general advice anyway, not just for you)...
Have a great time and keep in touch with you acitretin journey...
Wooleyb
Thank you Wooleyb
It is good to know other people have got to a place where they can manage things and it's under control. At first my patches improved a bit but I'm on day 12 now of Acitretin and I have loads more patches and the ones that were fading are now red and angry. If this is temporary I will persevere but how do I tell? How long does the getting worse bit last before it gets Better in your experience ?
I love my job but I'm not sure I can even make it on to work now as my face has got bad again as well.
I know what you mean about thinking about psoriasis all the time it's constant worrying. I would say about 75 per cent of me is covered though now so I find it impossible not to think about it. I don't suppose that helps either.
Any further advice gratefully received