Psoriasis is making me suicidal

[ShadowPuppets]

I developed psoriasis after the birth of my second child last year, it’s been mild until the last couple of months. It’s now severe, all over my body and face. I can’t move without it cracking and bleeding. I’m itchy every second of the day. Whenever I leave the house people stare at me. One section in my cleavage has a fungal infection. I can’t sleep. I can’t have sex. Work have agreed I can WFH until this flare is under control. But I can’t see it ever happening. I have a private consultant appointment on Wednesday but my private medical insurance won’t cover it and I can’t afford private treatment so I’ve no idea what happens next.

It’s been the hardest year of my life since youngest was born - I had PND, relationship has been tricky, DH lost his job, money worries etc. I’ve lent on DH so much and I really don’t know how much more I can take. I have great family and friends but they’re all going through their own shit at the moment.

I know my beautiful DD and DS need me here but I look like a monster. I’ve got no energy to do anything, I don’t want to leave the house, I’m skipping lunch today because we don’t have any food in and I can’t face going to the shop because my face is bleeding and I look like a freak. If this is what my life is now I don’t want to go on. I don’t know why I’m posting but I’m at home alone crying on my bed, leaving bloodstains everywhere and wondering what I did to get dealt such an unfair hand. I don’t know how I can go on.

Oh you poor poor thing.
I have no useful advice or experience just massive sympathy.
💐

Do tell your GP- not necessarily the dermatologist except as very relevant background- how low you’re feeling. This apart from the psoriasis needs addressing.

What medication are you on? Methotrexate is a godsend, and available on the NHS via your consultant. There are lots of creams and bath oils you can buy OTC or get on prescription to help - sometimes available on NHS and sometimes not, think it depends on the area. Sunbeds can also help but I'd check with your doctor first.

Most people know somebody with ezcema or psoriasis or have it themselves, so won't be looking at you with anything but sympathy and understanding. Please don't think of yourself as a monster.

I got prescribed some sertraline when I had PND, I didn’t wind up taking it. I’ve been toying with starting it but didn’t want to risk it interfering until I had a treatment plan for the psoriasis. Also that was 6 months ago, so probably shouldn’t start it without a GP appointment. I’m worried that having done a private consultation for psoriasis means it’ll get too confusing with the NHS and private stuff - I’ve never used private healthcare before but I’ve been desperate.

At the moment just OTC stuff and a cream for the fungal infection. Creams just seem to help a bit with the itch but aren’t getting rid of the psoriasis, every day I’m waking up with bigger or new bits. Waiting for this derm appointment and praying it provides a plan but I just can’t see that this will ever get better. It’s everywhere. Plus every medication or therapy seems to come with increased cancer risk which feels so selfish when I need to be here for my children.

I'm so sorry, psoriasis is absolutely shit. Have the insurance said why they won't cover the consultation? I had a private consultation for psoriasis last year and mine did reimburse. However if you can pay for the consultation itself, ask for the dermatologist to write to your gp with the required prescription and they will issue it on a nhs prescription. Again I did this just last year and I'm still collecting the repeat prescriptions no problem.

I think you should see your gp separately for your mh for some support, you've had a tough time and hopefully things will improve quickly when you get the right treatments in place.

Can you try some dietary tweaks as my family have found dairy is a massive trigger for it for example.

I’m sorry, I know I’m sounding so negative but I just don’t have any hope left in me.

Private appt is a good idea. I did that and the dermatologist just wrote to the GP so there was a record of what we’d discussed and what she’d prescribed. This meant I could just go back to the GP for repeat prescriptions.

It is definitely a good idea to get a private appt and won’t confuse anything.

Just to add mine was quite severe and I came out of the consultation with a plan and the list of meds, it's wasn't a quick fix but it improved steadily and I've had it under control (mostly un noticeable to other people) for months now.

Ds 19 has it. Really bad. Been going on the sunbeds. Risky I guess but so is fragile mh...

Thanks, that’s helpful re writing to my gp. Bupa have said psoriasis has been added to their ‘relapsing remitting’ list so I have 90 days grace period and then it isn’t covered any more. Hence the private consult but it won’t be long enough for a treatment plan, also they can’t guarantee they’ll cover any treatment at this stage, it’s just the consultation.

I know I should reach out to my GP but in the case of my PND the only thing that made it better was time and I’m not convinced that they can do anything - I promise if this psoriasis disappeared tomorrow I wouldn’t feel like this. The idea of looking like this and feeling like this for the rest of my life just makes me want to die.

You don't sound negative; you sound thoroughly down and it's absolutely understandable. I promise you there IS hope - I've seen people covered in raised, flaking, angry red psoriasis from scalp to toes and with the right treatment plan, a few months later all I could see was patches of slight redness.

Your dermatologist will have a plan, likely methotrexate. And don't forget to put the risks in perspective: the liklihood of any psoriasis treatment causing cancer is absolutely tiny.

Thank you x

Thank you - I really want to believe this for me. I can’t live like this, it’s not fair.

Has light therapy been suggested? I've been trying to get it as I've heard people say they have never had it again after that?

I'm lucky I just have a small patch on my face, but oh my I get it all over my butt cheeks 😭 a giant scab, also on my scalp, I end up with bald patches looks horrendous, I had to send in photos to doctor and they were surprised how bad it gets. For years I've just been given steroid creams one after another and have no luck. I'm starting to get a flare up again and patches have started on arms and legs, slowly getting bigger 😭 I find once it's flared up it's so hard to sort out and get back under control. Are you run down? Mine is worse if my immune system is taking a beating.

I would try and see someone to discuss how you are feeling, it's awful for you to be going through this and feel so awful x

Are you taking an antihistamine?

Have you tried the Avene Xeracalm range? It's preservative free. It's in sterile containers for this reason which air can't get into. It's very good for flare ups.

Skin conditions like this can also be exacerbated by stress. The anti depressant may help if you are under a lot of stress.

Echoing pp in seeking dietary cause - mine was undiagnosed coeliac. I now am in remission.

Really reduce cleaning products, detergents and shampoos and shower gels. Plain soap and conditioner-only washing helped me immensely, washing with very little non bio powder with high temps.

The private consultant could put you on to their NHS list if they have one or ask a colleague to.

You need at the very least a long acting steroid shot to try and give you some relief - and what you may find is that your mood lifts, as uncontrolled inflammation causes emotional and mood issues all by itself (it's a known thing in rheumatology and dermatology that somebody can be sobbing uncontrollably at clinic and then absolutely fine emotionally by teatime).

And even if you took the worst case scenario of a biological medication resulting in a cancer diagnosis in the distant future;

1. Wouldn't you rather have something resembling a life now?
2. Uncontrolled autoimmune disease also increases the risk of cancer. Flip a coin, cancer after feeling better for years or cancer after feeling like shit for years? I took the feeling better.
3. It's better to take all those years to develop something that could well be treated easily by then, rather than let uncontrolled inflammation contribute to cardiovascular disease. A stroke or heart attack by 56 caused by not being medicated (like my father had) isn't preferable to maybe getting cancer in your 70s.

www.psoriasis-association.org.uk/forums/topic.aspx?ID=3842

Oh OP that's really dreadful for you.
You absolutely must see your GP if the time on your private insurance elapses before you get a private treatment plan.
You must make absolutely certain you explain to your GP how this condition is affecting your overall wellbeing and makes you feel so negative- these are real feelings based on clear visual evidence.
From experience of a member of extended family, there is a drug treatment in the form of injections that you keep in the fridge. Some sort of immunotherapy, no idea what it is called. She tried a variety of treatments without the level of success she was expecting. This was the only thing that worked for her. You need to push for this sort of treatment. Do not use the light therapy- she did, it worked during treatments but was not a permanent solution and she developed skin cancer (not a sun worshiping woman at all, ever, so the medicated 'sun bed' sessions were a direct factor).

Stress is a major trigger for flare ups but, I don't see how you could possibly avoid stress especially if you are so upset about the condition.

There are treatments out there and as much as I understand of this condition, you will find a lifelong solution.

(((HUG))) very very gentle x

please don't feel it will be like this forever, as pp have said, the right treatment plan and it can be improved enormously.

you do NOT look like a monster! You look like a woman with a skin problem. The vast majority of people who notice, many won't-too wrapped up in their own issues!!) will simply think 'wow, that looks sore, poor woman'

AS other PO's have said, the consultant will write to your GP & get you on the right treatment plan, it's common, it won't 'confuse' things.

best wishes that Wednesday gives you a positive plan of attack. Xx

I've had psoriasis most of my life, it was at its absolute worst in my young adulthood and is easing off in middle age, although I did had a terrible bout of guttate psoriasis after a throat infection a few years ago.

There are loads of theories and treatments, none of the creams are pleasant to use but they can and do work.

Nothing works magic like a sunbed though. If you're able, get sunshine on as much of the affected parts as you can. Don't use spf. Use a sunbed if you can. Tell anyone who moans to fuck off. I feel so sorry for you, it's awful isn't it.

Oh, and don't assume it'll go away if you were only to eat something with magic properties/avoid entite food groups/exercise/think more positively. You'll get used to those recommendations. And ignoring them when they're talking about allergies or bullshit about alkaline diets and magical thinking.

The only psoriasis on my body since I started cosentyx in 2020 is a 50p sized patch on my right arse cheek and a slightly dry forehead and limbs. Even my nails are fine at the moment.

It's very different to when DP gave me an undercut to try and help me with the burning and splitting scalp, chunks of hair falling out, every skin fold opening up and from toes to top of my head covered in plaques, even without any infection present.

Alcohol and caffeine are both triggers for my psoriasis. I haven't given either up but I do try to be careful.