How it’s got worse

[MartinB]

Hello there. New member and I’m at my wits end. 

Started off with a small scratch on my head around 2007. Within years it spread all over my body but in small, manageable plaques I could treat, initially with Dovobet, then and now with Enstiler. 

The last 12 months it’s changed from plaques and is now all over my body in one big, red rash that I have figured out a cycle of its weekly events. 

Monday it’s at its worse. It now hurts like sun burn. I cover it all with the foam and by Wednesday I can pretty much fill a hoover with the dead skin. Then it’s flat but still very red but no or little dead skin by Wednesday. I then feel like I have even worse sun burn before a couple of days relief but completely red and unsightly. By Sunday night the lumps appear and then it’s rinse and repeat again from Monday. There is no escaping it and it is now at the point where I cannot live a normal or comfortable life, which I could before. I have never been bothered by people looking at me in public and would wear T shirts and shorts. Not anymore. It is ruining my life. 

12 months ago I started smoking and drinking heavily and I know there can be no coincidence, but kicking the two is hard and I use them both as an escape when I look at what the psoriasis is doing to me and how it it how a physical pain as well as a psychological one. 

Why has it changed from manageable plaques to covering my torso as an entirety, and large plaques on my arms and legs? I am only blessed so far it hasn’t affected my face. I am going through 2 cans of foam every 4 weeks, plus tubs and tubs of post shower moisturiser in the form of Adex.

[Caroline]

Hello Martin,

Welcome to psoriasisclub.

We are a small bunch of sufferers placed all over the world.

That is quite a rant that you are sending us.

One thing is clear, you are at the end of the foams and creams and you will have to step over to the systemics or the biologics, that last one is, seen from your coverage the most logical, as I do not see how the systemics could fight your current status.
Are you being treated by a dermatologist? Then he/she should be able to prescribe you a biologic.

It may be that you may have to try some systemics.

In a few hours, others will kick in to welcome you.

Nice to meet you.
Caroline

[Fred]

Hello Martin  to Psoriasis Club.

You say diagnosed 2007 have you seen a dermatologist in that time ? if not then you should push your GP to refer you to one as Dovobet and Enstilar are never going to keep it way, and both should not be used for more than a few weeks.

It sounds to me like you are using far too much Enstilar and you could be making things worse, so please demand from your GP that you get an appointment with a dermatologist .............................. I see you are in the UK so it may be difficult but kick them up the arse as you do have the right to better treatment than what you are getting.

Yes smoking and alcohol are good crutches to help one cope with psoriasis, but both are also bad for psoriasis so again that could be making it worse.

Regards.

Fred.

---

*If you want to know when there is a reply to your thread see here: Notification of new threads and posts

[Raxyl]

Hello Martin,   to Pclub, as the others have said, get a referal to a dermatologist if you haven't already and push them for a better treatment plan.  I was diagnosed with psoriasis back in the late 90s and like many others have had to jump through the hoops to find the right treatment.  I'm currently on a biologic which has been a total life changer for me.

Best of luck mate, I hope you get some resolution soon.  This place is a great resource and the people are friendly and have a lot of knowledge. They have helped me and may others over the years.

Craig

[Turnedlight]

Hello there. New member and I’m at my wits end. 

Started off with a small scratch on my head around 2007. Within years it spread all over my body but in small, manageable plaques I could treat, initially with Dovobet, then and now with Enstiler. 

The last 12 months it’s changed from plaques and is now all over my body in one big, red rash that I have figured out a cycle of its weekly events. 

Monday it’s at its worse. It now hurts like sun burn. I cover it all with the foam and by Wednesday I can pretty much fill a hoover with the dead skin. Then it’s flat but still very red but no or little dead skin by Wednesday. I then feel like I have even worse sun burn before a couple of days relief but completely red and unsightly. By Sunday night the lumps appear and then it’s rinse and repeat again from Monday. There is no escaping it and it is now at the point where I cannot live a normal or comfortable life, which I could before. I have never been bothered by people looking at me in public and would wear T shirts and shorts. Not anymore. It is ruining my life. 

12 months ago I started smoking and drinking heavily and I know there can be no coincidence, but kicking the two is hard and I use them both as an escape when I look at what the psoriasis is doing to me and how it it how a physical pain as well as a psychological one. 

Why has it changed from manageable plaques to covering my torso as an entirety, and large plaques on my arms and legs? I am only blessed so far it hasn’t affected my face. I am going through 2 cans of foam every 4 weeks, plus tubs and tubs of post shower moisturiser in the form of Adex.

Hi and welcome!

If this is all treatment from the gp, it sounds like gone beyond their scope and they should be referring you to a dermatologist.
If this is the derm prescribing all this, time to show them how bad it’s got since you last saw them. However I’m willing to bet this is your gp, just prescribing on repeat..

The way you’re describing applying the foam, most topical steroids are twice daily aren’t they? It kinda sounds like you only apply it once a week. I’ve not heard of that approach but I’m by no means an expert.

If your psoriasis is hot to touch and sort of swollen it suggests it might be infected, or moving towards something called ‘erythrodermic’. When I was in that state (probably about 75/80% covered) the skin flaked tiny bits everywhere and I was shivering as if I had the flu. They eventually used a course of oral steroids (prednisolone) to get things under control.

Obviously your case might be different, but deffo try and get seen by a derm - and in the meantime the gp might need to take interim action and not just expect you to wait for weeks for a referral without doing anything to help right now.

Don’t play anything down, if you’re anything like I was, it’s far worse than the doctor can understand just by seeing your skin. If you’re not sleeping because of it, don't forget to mention that too.

One more thing, many on here swear by coconut oil, and I personally found a jar of sudocrem to really help as it contains zinc oxide and has the same effect as after sun lotion. It’s messy stuff unfortunately but maybe worth a go.

[MartinB]

Thank you all for the kind welcome and responses. 

I’ve never been referred to a dermatologist in all the years I had it. The only other treatment I had was light therapy, 12 sessions which were useless. Then they gave me enstillar over dovobet and changed double base to Adex. 

I’m going to not use the enstillar this week and see if it has an effect. All it ever does is remove the flakes and makes my skin flat and smooth for a few days anyway. I’ll go GP when I get back and see what can be done.

[Fred]

I’ll go GP when I get back and see what can be done.

Push them hard and don't take no for an answer, light and topical are never going to keep it down. Also tell your GP it's effecting your quality of life, good luck and please do report back as your input could help others in the future.