Acitretin medication - first day - anyone else on this?

Posted Wed 10 Apr 2024 13.26 by Rads68

Thanks. That’s my thoughts at the moment but I’ll speak to my dermo.

Posted Wed 10 Apr 2024 13.27 by rapture83

@bev is was me who recommending the lamp, how are you getting on with it? I used mine on my arms and legs on Monday and they are looking a lot better, usual, I need to keep doing it but it defo makes a difference!

Posted Wed 10 Apr 2024 13.32 by Bev

I agree with Rapture 100%

Posted Wed 10 Apr 2024 14.04 by Bev

@ Rapture lamp is going well im using it and eperaderm on hands and feet im up to 2.5 minutes. Im sticking with it. Thanks. You on any other meds ?

Posted Wed 10 Apr 2024 14.51 by rapture83

That’s great it’s going well, I’ve saw a lamp that’s about the size of a computer monitor screen, it’s £900 but I’m going to defo get it next year for sure, for now I’m going to just keep doing my forearms and lower legs, I’m doing another 2 min session tonight after doing 3 mins on Monday, it’s a pain tho as it’s so time consuming! No other meds Bev, only instillar foam which I’ll use once/twice a week max! Next derm appointment is June so praying they’ll let me start bio treatment this time

Posted Wed 10 Apr 2024 14.59 by Bev

I have only ever had betnovate and epederm or cetreban for my hands. They have been bad for at least 26 years its only this past 12 months it appeared on my feet. I was given diprosalic, dermovate, eumovate and betnovate in October 2023. Never anything more than that. Hopefully you get on biologics soon. I was contacted by biologics within 7 weeks of stoppping acitretin

Posted Fri 12 Apr 2024 16.57 by Bev

Rads let us know how you get on

Posted Mon 15 Apr 2024 18.16 by Chris7319

Hi everyone i have started aciterin 2 days ago i have such a dry mouth i have 0 appetite i dont feel myself and i am taking a low dose. The dr prescribed me 20mg a day to start then after 2 weeks up to 40mg a day no way am i going up that high. I changed it after the first day to 10mg. I know we are all different but is what i am experience normal?

Posted Mon 15 Apr 2024 18.29 by Rads68

Hi Chris. I feel your pain. 6weeks ago I started on the same dose as you with the aim to double up after a month. 1st week dry lips and nose sores not much else. 2nd week similar but with an incredible clearance over my buttocks, my worse effected area. But… a month in and I’ve had a really bad flare up now buttocks and all over legs covered. Rightly or wrongly I’ve started weaning myself off, trying desperately to get hold of consultant but not favouring this med. at all at the moment. Let me know how you get on. We’re all different

Posted Mon 15 Apr 2024 19.06 by Chris7319

Psorasis is such hard work. Unfortunately for me i cant have anything else than this i am hoping this works and doesnt make me any worse i have a hiatus hernia which is too small to operate on and have to take pantaparzole everyday otherwise i literally cant eat or drink anything without acid reflux. So with this aciterin is the only thing i can take that doesn't react with that medication.

Posted Mon 15 Apr 2024 21.24 by Rads68

So sorry you’re suffering so much. I’m probably going to try the cyclosporine route next. Almost hoping it doesn’t work for me so I can try biologics. Don’t suppose I’m the first.

Posted Tue 16 Apr 2024 06.08 by rapture83 (edited Tue 16 Apr 2024 06.17 by rapture83)

Hi Rads, I thought I had tried everything from the dermo but I don’t recall ever having tried Cyclosporin, is this another oral med that may have side effects and is harsh on organs like the liver like the drug in this topic and MXT? As I’ve not tried this yet I have no doubts I’ll be put on this next before biologics and if so I’m not sure I’ll do it after the past few experiences with oral drugs, I’ve had nothing but issues with them all. @chris - That sucks you can’t try a lot of stuff bar this drug. I’m still having issues with it and I’ve been off it for about 4 weeks now. My hands are still peeling, not like full palm but loads of spots, it’s almost like dry skin on your face or something, I’m just moisturising my hands non stop and the feeling in the middle of my chest returned yesterday morning, I had to end up working from home and hardly ate anything all day, feels better this morning tho after a massive sleep. What the hell is that feeling? This drug I feel has caused some internal damage that may take time to heal! I like you turned into a different person, I felt almost depressed and even my wife noticed it straight away, I wasn’t myself around her and my kids and she was concerned, at this point I stopped it, far too much was going on with these side effects I was getting concerned myself. I hope you get better success with it and not too many side effects, how it’s started off with you was exactly the same as me then more and more happened! As I said before tho, there are some people out there that only get the lips/nose and that’s it and it works great for them, they just power through was deal with the minor side effects, mine where just too severe and effecting my life. @Bev - I used my handheld lamp twice last week, full 3 min sessions on forearms and lower legs and then done 2 mins as I was a tad burnt from it haha, basically over a the areas I mainly care about that I’ve got P on as it’s coming up to summer. It’s practically cleared my P in these areas, I can see tiny spots appearing again after 4 days of no lamp so will blast it again tonight but the lamp does work, well it seems to be the best treatment for me but as I said before it’s just time consuming! due to the size of the lamp it only covers small parts at a time, usually I’m about 1 hour if I do forearms and lower legs/feet! Thanks

Posted Tue 16 Apr 2024 06.57 by Rads68

Rapture83, Cyclosporine is in the same group of meds as mxt. Usually, I’m told, they give it to people who need a quick clearance, for example a wedding or function. You can only take it for 12 months max as can still interfere with kidneys etc. we’ll see.

Posted Tue 16 Apr 2024 07.46 by rapture83

As a 40 year old man who’s had P for 10 years now I am not ashamed in buying or putting on concealer haha!

Posted Tue 16 Apr 2024 09.41 by Bev

@Rapture I am up to 3 mins now. Some splits under my big toes and heels but i defibitely think the lamp is keeping it in check. Sorry to hear your chest pain came back. Mine appears from time to time no sign of the cardiology or respiratory appointment thst were mentioned before I start Humira. I won't even consider anything else until i get those appointments. Biologics is mid May. I would have had lines on my finger and toe nails prior to acitretin. Nails are all very weak, not growing at all yellowiing and breaking at the sides. Hair still falling out. I did however go see another dermo who recommended eucerin shampoo and scalp treatment. Wish I had never paid to go private and just stuck to creams tbh Wishing everyone a better week

Posted Tue 16 Apr 2024 10.50 by rapture83

@bev sorry to hear about your hair still falling out, what a nightmare! That’s good your up to 3 mins now! I’m about the same then as I say 2nd session that week I lower it to 2 mins just to avoid blisters from burning as when I do 3 mins the spots are quite burnt/red but fade away after a few days

Posted Tue 16 Apr 2024 10.54 by Rads68

rapture83, drop me an email.

Posted Tue 16 Apr 2024 10.56 by rapture83

Thanks I will do!

Posted Wed 8 May 2024 12.54 by Rads68

Update: after 2 months on Acetretin I've come off it. The first month was met with good results, then I had a major flare up, right across my backside and continuing up my back and down my legs. Also skin on soles of feet continually peeling off, very painful. Next stop for me is Methotrexate, but not util my holiday in a couple of weeks time. The journey to hopefully biologics continues. rapture83, were you still intetrested in my UV machine?

Posted Wed 8 May 2024 13.12 by rapture83

Hi Rads, I am still interested, I emailed you as soon as I received your address but I never heard back, thanks. I’m still using my small handheld lamp and it’s just so time consuming it’s really hard to keep at it, my legs are a bit of a mess just now! Also the soles of my feet have also started peeling like at the edges where your rough part of the sole is. I’m just about to head over to the local tanning saloon for a sunbed, I’m going on holiday in 5 weeks so I’m thinking of trying sun beds 3 times a week until I go, see what happens as nothing else is helping!

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