Any advice welcome!!

[Emi1995]

Thank you all SO much for all your messages.

I cant quite believe how many of you took the time to offer some advice, as the only person I know with skin like mine it can sometimes be quite difficult to have these conversations. 

You've all given me loads of food for thought, I'm going to mull it over until monday then give the GP a call. Im aware that topicals are just a temporary option but they might just offer me some breathing space while I decide whether to go back down the oral/ biologics route. 


Thanks again x

[Caroline]

Hi Emi,

We do that because we all know what it is to have this problem in one or another way. And we have found each other spreaded all over the world.. Each of us just tries to help a little bit and give our experiences with the disease and with the ways we found to deal with it.

Thank you for your kind words.


Caroline

[Fred]

Hi Emi,

We do that because we all know what it is to have this problem in one or another way. And we have found each other spreaded all over the world.. Each of us just tries to help a little bit and give our experiences with the disease and with the ways we found to deal with it.

Thank you for your kind words.


Caroline

Yes there are some of us that enjoy helping others, we may not be doctors but like Caroline said we know what it's like to live with it.

Could be a good option to go for a topical rather than diving in, who knows it may give you some respite for a while or if you are very lucky there is always the chance of it going in to remission albeit rare.

Do come back and keep us updated, it's feedback from people like you that helps others.

[Bill]

Hi Emi and welcome.

You need to do something that works. Denial is a place I have visited. It didn't help. You have a systemic disease. You might be lucky and manage it with topicals, but most likely you will not. You should seek the care from a dermatologist who can provide you with effective therapies. I tried topical treatment for many years, managed very badly and suffered unnecessarily. I have been on systemic treatment for nearly ten years and have had almost no disease for many years. I don't miss it.

Cheers

[Forest Walker]

Before finding this club, the dermatologist I first saw provided no warnings about skin damage with topicals, and I eventually had very thinning skin and bleeding in some places from overusing them.  Then I found Psoriasis Club and learned so much, which led me to seeking a better dermatologist.

At any rate, the topical regimen my current dermatologist recommends is to use the steroid for no more than two weeks at a time.  She also prescribes a vitamin D cream to use when not using the steroid ointment, alternating days or weeks.

The medications she prescribes for me are:

Mometasone Furoate ointment, 0.1% (I would use this on legs, soles of feet, and torso as needed)
Triamcinolone Acetonide ointment, 0.1% (I would use in more sensitive places such as between toes, skin folds)
Calcipotriene Cream, 0.005% (This is the Vitamin D Cream, which is very expensive with my insurance)

I used over the counter Hydrocortisone 1% infrequently in genital area as needed.

She also prescribed Methotrexate and light therapy (I couldn't afford the insurance co-pays for light therapy).  I tried the Methotrexate for five months.  My skin cleared by three months, but the daily nausea was awful, and I quite using it in May 2022. I hope I never, ever take it again.

I hope that helps as you talk with your doctor and look for a quick relief.  I don't think you'll find a lasting relief with topicals only, but maybe it will help calm your skin after the Covid infection.   I'm sorry that your immune system seems to have kicked into a new gear after your Covid.  So not fair.  I hope you feel better soon, whichever course you take.

[Turnedlight]

Hi Emi welcome to psoriasis club!

When I had a big flare up with skin affected all over my body I couldn’t sleep either. I found cream containing zinc (like nappy cream) helped control the itching but it is a bit messy which is a downside.
A lot of people swear by coconut oil so it’s worth a try though I found it made the itch worse for me.

I expect you’ll get a steroid cream or ointment from the doc, they will be reluctant to let you use any steroid at all on your face though my dermatologist has a slightly different opinion on that.
I’d probably not leave it too long before doing something as it’s so miserable being unable to sleep because of your skin..
Hope you get some sympathy and help from the docs next week.

[Emi1995]

Thanks so much again for all your advice,

 I’ve been using coconut oil for a couple of nights and it seems to have helped slightly with the constant wake ups. Im almost positive that i will have to try alternatives after topicals but if I could just have some relief for a few weeks I think I’d feel ready to tackle some more permanent treatments.

In the past vitamin d ointments haven't really done much for me but Im willing to give anything a try at this point. My skin has never been so bad.

Also, Im so blessed to live in England where I dont have to worry about insurance, Im sorry that some of you have to consider the financial implications of treatments, that must be a really difficult situation. 

Xx

[Fred]

Also, Im so blessed to live in England where I dont have to worry about insurance, Im sorry that some of you have to consider the financial implications of treatments, that must be a really difficult situation. 

Xx

It's free in France where I live, I think those that have to pay are mostly in the USA or Far East but they do have different systems that can help with the payments based on your income or by paying in to an insurance which can sometimes be paid by your employer.

I may be wrong, but I think most people can get some sort of help especially with the Bio's.

[mataribot]

I would go down the route of Biologics if possible. Lotions and potions only take you so far...

[D Foster]

Hi Emi , welcome to the site . I take Stelara and have for many years and it works really well. If you can get on to something like that you will probably find that it should clear much better than topicals which have limited use though I do use very infrequently Enstilar on the couple of stubborn places that keep coming back. I did use methotrexate for quite a few years both oral and by injection which did work up to a point for me but it can be an extremely unpleasant drug to take for some people and it wasn't the most pleasant for me but tolerable though for some people it can be horrendous .
Best of luck with your next appointment.