Newly diagnosed and about to start Acitretin

[jiml]

Day 8 of Acitretin and things have got worse (apart from my face which is better than before but still red and blotchy like burns). I've developed even more new patches and spots of psoriasis and itch like mad. Hoping it will pass...

I hope the extra patches and the itching calm down soon, I’ll keep my fingers crossed that it starts to work for you soon  

Thank you...my face is better than it was and I was feeling very hopeful...but it's just gone mad on my body today for some reason. Hoping it's just a short term blip.

I haven’t been on acetretin so I’m not sure but Johnb has been chatting with you, and I hope it is only very temporary and that it’s the start of the process of clearing ( getting worse before it gets better ) but I hope it works for you so it doesn't spoil your holiday ... the sun should help. At least it always worked for me when I was bad .... good luck

[JohnB]

Day 8 of Acitretin and things have got worse (apart from my face which is better than before but still red and blotchy like burns). I've developed even more new patches and spots of psoriasis and itch like mad. Hoping it will pass...

I hope the extra patches and the itching calm down soon, I’ll keep my fingers crossed that it starts to work for you soon  

Thank you...my face is better than it was and I was feeling very hopeful...but it's just gone mad on my body today for some reason. Hoping it's just a short term blip.

I haven’t been on acetretin so I’m not sure but Johnb has been chatting with you,  and I hope it is only very temporary and that it’s the start of the process of clearing ( getting worse before it gets better ) but I hope it works for you so it doesn't  spoil your holiday ... the sun should help. At least it always worked for me when I was bad .... good luck  

Don't be disheartened, you are still in early days. It does take some time to load your body with Acitretin. Dosage is very much a black art and you may need more to kick start any benefits. I've been on it for nearly 2 years now and I still get outbreaks particularly on my bum and lower back around about the size of a 5p. Most don't effect me but the odd one feels like a cigarette burn for a day or two.

Jim's right about the sun, Acitretin and sun work well together band you should see a marked improvement, but it also sensitises you to the sun so you may find you burn a little easier. Not long now to that holiday 

JohnB

[Kentpatient]

Hello again and thanks for your reassurance everyone. I don't feel very good on this medication...I keep getting the shivers and it feels as if I have sunburn, not sure if that is all the new psoriasis patches or the medication...it's been raining all day today here and was only about 12 degrees yesterday so I am pretty confident I don't actually have sunburn   but that's how it feels.

Can anyone advise / has anyone experienced this? 

Thank you all for your listening to me, I think I would have driven all my family and friends mad by now if I didn't have this club. And none of them have this horrible disease so they don't really know what to say to me

[Fred]

I can't comment on Acitretin as I have never used it. But you won't drive us mad, we are in the same boat as you and we enjoy helping.

For what it's worth, I would say carry on for now with the Acitretin, go and enjoy your holiday and when you come back have another look at it.

[jiml]

I have never used it but have found that shivering can be related to acetretin the advice I have read says don't stop the treatment as it could be your body getting used to the drug....
But do report it to your doctor

Quote:

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Avoid exposing your skin to wind, cold weather, and sunlight, even on cloudy days. Your skin will be more prone to sunburn, dryness, or irritation, especially during the first 2 or 3 weeks. You should not stop taking acitretin, unless the skin irritation becomes too severe. Do not use a sunlamp or tanning bed. Use sunscreen or sunblock lotions with a sun protection factor (SPF) of at least 15 on a regular basis. Wear protective clothing and hats and stay out of direct sunlight, especially between the hours of 10 a.m. and 3 p.m.

Tell your doctor right away if you have sudden and severe stomach pain, chills, constipation, nausea, vomiting, fever.

[Kentpatient]

I have never used it but have found that shivering can be related to acetretin the advice I have read says don't stop the treatment as it could be your body getting used to the drug....
But do report it to your doctor

Quote:

---

Avoid exposing your skin to wind, cold weather, and sunlight, even on cloudy days. Your skin will be more prone to sunburn, dryness, or irritation, especially during the first 2 or 3 weeks. You should not stop taking acitretin, unless the skin irritation becomes too severe. Do not use a sunlamp or tanning bed. Use sunscreen or sunblock lotions with a sun protection factor (SPF) of at least 15 on a regular basis. Wear protective clothing and hats and stay out of direct sunlight, especially between the hours of 10 a.m. and 3 p.m.

Tell your doctor right away if you have sudden and severe stomach pain, chills, constipation, nausea, vomiting, fever.

Thanks Jim. I will call him on Monday

[jiml]

Good idea to be safe as shivering is known, but not common from what I have read

[Turnedlight]

The shivering sounds like it might be a side effect, but it could just be down to the amount of skin affected by the psoriasis.

I had a nasty time where I had flu like symptoms - shivering and piling on the clothes but at the same time my psoriasis was very red and hot like sunburn.

The derm explained that your skin works out what temperature you should be, and areas affected by P can’t do this properly, so the more you have the worse a job it’s doing.

I think the thing to do is check your symptoms with the derm nurse or whoever you can contact to put your mind at rest.

[Kentpatient]

The shivering sounds like it might be a side effect, but it could just be down to the amount of skin affected by the psoriasis.

I had a nasty time where I had flu like symptoms - shivering and piling on the clothes but at the same time my psoriasis was very red and hot like sunburn.

The derm explained that your skin works out what temperature you should be, and areas affected by P can’t do this properly, so the more you have the worse a job it’s doing.

I think the thing to do is check your symptoms with the derm nurse or whoever you can contact to put your mind at rest.

Thank you Turnedlight. That makes sense to me as a lot more patches came up literally overnight. They are not as inflamed today and I'm not shivering as much. I will call my dermatologist though. Thanks for your help.

[Wooley]

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