Posted Fri 23 Jul 2021 08.08 by Karen (edited Fri 23 Jul 2021 08.13 by Karen)
Hi - I've suffered with psoriasis for over 30 years, after starting with a small patch on my scalp. That is now completely covered and it spread to my elbows, knees and down below. Unfortunately (coincidentally after I had a spate of menorrhagia and had to have a coil fitted) I developed guttate. I have patches all over my legs and torso and I feel so self conscious, itchy and embarrassed. I don't want my legs on show and struggle with clothes that make me feel confident when if I go out in the evening. I was previously given estillar and exorex lotion which I found time consuming and had to apply to every dot on my body - and struggled to use on my scalp. It may sound vain but my hair is the one thing I feel I have that makes me feel good about myself...in any case, two days after applying anything and it's all back. My skin on my body doesn't seem to improve in any case, and I have probably had every cream, shampoo and lotion that there is to try. Because of covid, the dermatologist wants to scrub round my next step which was to be uvb light therapy and put me on acitretin. She says it's kinder than methotrexate and the light won't get to my down below areas anyway. I'm terrified to be honest after reading the reviews on here. I have the phone call on Thursday but feel as if I've run out of options. I can't go on as I am but have got to the stage where I feel completely consumed by psoriasis - but I don't want to damage my hair and have peeling skin..sounds as bad, if not worse, than psoriasis!! Thank you for listening and sorry for the long moan...
Posted Fri 23 Jul 2021 19.55 by Moggy1
Sorry to say 4 months in and hair ruined . Dry brittle and falling out.
Nothing helps spent a fortune on lotions and potions
Also like you start on acitretin as light therapy not available at moment
I have PPP , never heard of it 10 months ago and couldn’t use my hands so was desperate , agreed to take a low dose of 10mg a day
Dermatologist said I wouldn’t know I was taking it
That turned out not to be true but my hands are improved but not clear.
It a personal choice but I think most people have hair issues
Take care hope you find treatment to ease your suffering
Posted Fri 23 Jul 2021 23.18 by Steview A P sufferer for over 30 years, through good and bad times.
Karen, sorry to hear your current position. I suppose there comes a time where all topical have been exhausted and as you say the next step would be light therapy or systemic. The decision to accept Acitretin will be yours though. Some P suffers happily change diet or alternative therapies and see results whilst others can only find relief from stronger meds. This may be your time to try a stronger med.
I cannot make acitretin out to be a pleasent drug to take as it was far from it but if you are after results it may be worth a try.
Some of the side effects wore off after time but some are longer lasting, even over ten years ago I stopped acitretin I still have lasting side effects.
One good thing compared to methotrexate is that acitretin isn't an immunosuppressant so maybe safer to take in the current climate. From my experience I would definitely pick methotrexate if I was offered them both again.
I hope this provides you relief and better quality of life. Good luck.
Posted Fri 23 Jul 2021 23.26 by Steview A P sufferer for over 30 years, through good and bad times.
Moggy1, as you have unfortunately experienced, ahair loss along with brittle or curly hair are common side effects.
Glad you are now seeing an improvement.
A good Dermatologist should not be saying you won't notice a thing. Even on low doses side effects are common with these systemic drugs unfortunately..
Hope it continues to work for you.
1Posted Sat 24 Jul 2021 08.50 by OhNo_NotAgain? (edited Sat 24 Jul 2021 10.44 by OhNo_NotAgain?)
@Karen: I would advise you to contact the Psoriasis Association directly. They can give you advice, from a position of wide knowledge.
Just scroll down this page and at the bottom you will see their email address, phone number and whatsapp .
Quit often I have seen them post here and invite new sufferers to contact them by phone, particularly someone who is new to the condition or particularly anxious about any aspects of the condition or their treatments.
If you look at the top of this page and click on "about us" you can read a bit more about the goals of the Psoriasis Association and what they do.
Wishing you the best,
Posted Thu 29 Jul 2021 09.51 by Karen
Thank you all so much for your advice. I'm getting the phone call today from the dermatologist and I will be asking to go on the long waiting list for light therapy and say that I'm not comfortable going on acitretin. I feel a bit embarrassed after my previous conversation with her and I was adamant (and to be honest, so desperate) that I would. Ironically because of the sunny weather, my skin has calmed down a bit - which says to me light therapy. I will be saying that I'm considering buying a lamp, although I expect her to say that she advises against it as I wouldn't be monitored. But I'd rather be in control rather than worrying about the implications of acitretin.
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