To feel alone with psoriasis

[shedmyskin]

i am absolutely- and I mean absolutely- fed up of my psoriasis. I’ve tried every herbal, dietary, topical and other skin treatment known to bloody mankind. They said I’ve ran out of topical options and need to keep using enstiller even though it’s making so difference now. But they said I don’t qualify for the next treatment stage (strong oral meds or injections) because my psoriasis isn’t widespread across my body. But the problem is that the areas I have it are extremely uncomfortable. It’s all around and behind my ears and extends across my head and basically surrounds my hairline up to my forehead, both sides and round the back. It’s also a big patch on the crown of my head too. I also have it genitally on my vagina extending up to around the urethra. As I’m sure you can imagine it’s excruciating to pee and even sitting down hurts. I usually get plaques of it around my back passage too but that’s not as bad although still uncomfortable

But because it’s not widespread I don’t qualify for any stronger treatments but they’ve also accepted that none of the topical treatments are working but they said all they can recommend is carrying on with enstiller even though it’s made no difference

I understand the stronger treatments are risky but I’m willing to take the risk to stop it because I’m permanently itchy and have massive chunks of my skin coming off leaving open wounds. I’ve had 8 separate infections and subsequent courses of antibiotics in the last 18 months because of psoriasis related infections

does anyone have any advice? Private isn’t an option unfortunately. Phototherapy won’t work because of the area of skin either.

another night in pain and crying myself to sleep because of it

bump ☹️

I am so sorry, that sounds utterly miserable.

Is there a charity for psoriasis sufferers that might be able to advise? I have an autoimmune condition and get a lot of helpful advice from the charity set up to support it.

I also have it and I can scratch mine silly. Tried various things from Dr till they eventually stopped working. A nurse suggested Germaline the other week and weirdlyits been working well for about a month now lol

Is that the GP or dermatologist who says no to other treatment?

Look up Hanna Sillitoe Skincare. She was on dragons den, suffered terribly with psoriasis for years but now better.

Unfortunately gps look at the percentages of the body it covers. I think you should ask for a dermatologist referral. Gps have some new restrictions where they can't prescribe certain skin medication which you might need. I pestered them for a dermatologist referral which came through after an year and the dermatologist wrote a letter putting me on repeat prescriptions for a few topical corticosteroids which helped me so much. Enstilar is rubbish and it only works for some time as this is an autoimmune condition so it needs mix and match treatments.

Can you get insurance and go private for a referral? If yes that's the best and fastest way to get treated.

If not , don't worry all is not lost . Go back to the gp ask for a referral mentioning that none of their treatments are working. You will be fobbed off but keep booking appointments after trying whatever they suggest (as sometimes it does click and work too ) in my case I was seen by 4gps and one registrar who all minimised my symptoms calling it a small patch even though it was bleeding. I kept saying well please give me something that works or refer me. As I was working abroad and their gps would give very strong corticosteroids which did kept my symptoms bare minimum. I had those reports too but my go said they are not allowed to prescribe those medications for some reason.

Lastly try to do something for yourself, nothing big a calm walk or some music anything that you like or love as I was told that stress makes it worse. I am happy to let you know the medications I was prescribed if that helps at all.
Hope this helps xx

Have you tried lemon juice? The real stuff in a spray. The bottle stuff is fine if it real lemon juice. It worked for my uncle.

Sorry I ment my GP not go

Also the line of treatment is basic moisturizer, the topical corticosteroids, the. Light therapy which works for most of the people and then internal medication and injections if I am remembering it correctly as it was few years ago and I was told by a very competent skin specialist abroad.

Get some natural sunlight on the patches whenever you can . I also take cod liver oil and vitamin d supplement as they help too. I am not a doctor so please Just make sure you run it by gp in case you have other health conditions which may get worse if you take these . I eat everything as I could never keep up with specific diets and they didn't help me at all with my skin.

OP you have my sympathy. I developed psoriasis at 20, on my head, face, torso and elbows. It was bloody miserable and like you I tried everything to cure it.

I then developed the arthritis that 10-20% of sufferers get, and am now on a biologic drug that I inject fortnightly.
I’ve been on it for 10 years and my skin has completely cleared up, as well as the joint pain and inflammation.
If you get any pain in your joints - it affects your feet, hands, spine and elbows mostly, go back to your GP for a rheumatology referral.

I never thought that developing a painful, inflammatory arthritis would be my saving grace.

Why aren’t they offering you light treatment?
I have always experienced remission for at least 5 years when I’ve had a round of light treatment.
it’s an amazing.
uou shouldn’t have to put up with it it’s awful.

I’m in agony with mine at the moment. It’s thick, itchy and sore. And to add insult to injury it’s now made an appearance across my butt cheeks.

I cry over it.

Guys! You really do t have to put up with this.
Step 1: Tell your GP you’d like to be referred for light treatment.
Step 2: go to dermatologist
Step 3: have 6-8 weeks of 30 second light treatment.
honestly, you’ll be in remission before you know it.

Light treatment isn’t for everyone though. If you’re very fair, or have had skin cancer it’s obviously not recommended.

I work in dermatology. The scoring system they use for psoriasis (PASI) which determines if you qualify for further treatment takes into account the severity and distribution on your body, if it is concentrated in small areas this may give a low score despite its impact on your quality of life.

That being said they should have done a Dermatology Life Quality Index (DLQI), if it can be demonstrated that the condition is negatively impacting your life then a dermatologist will most likely accept your referral.

I would push your GP further.

No advice but solidarity. Im so close to shaving my head so I can get to it easier.
mine is mostly on my legs, knees and elbows but also have some in my belly button and left ear canal. Enstillar worked for a few weeks but didn’t completely clear it up.

You have my sympathy op, I have psoriasis that's head to toe when I'm not medicated(only place I never had it was the balls of my feet)

I went through all the topicals and phototherapy. I'll never forget my first dermatologist refusing to put me on biologics because he personally didn't like the risks (never mind I was covered head to toe and in lots of pain) so refused to consider it. I was heartbroken and in pain. He retired, and my new dermatologist put me on biologics straight away.

You've said private dermatologist isn't possible, but is there any possibility there's another public dermatologist you can change to? You clearly need stronger medication for it. Otherwise, I found using silkcocks base as your shower/ bath soap and moisturiser helps. It doesn't lather when used as soap but it moisturises your skin like nothing else, it has no perfume/chemicals which is what you need to avoid and you can also use it in intimate areas which is a plus.

Also, not sure what type of psoriasis you have but if it's guttae psoriasis there is a very strong chance it'll clear up (from family experience it can hit late teens/20s and then clear up until your 50s when it can return for a bit before going again. I was just unfortunate that mine didn't)

We should start a flaky club.

Psoriatic arthritis sufferer here.

I too am done with psoriasis today. Ive spent all morning combing large plaques out of my head and my head still feels tight with the plaques.
Im lucky in that im waiting to start my 4th biologic (previous ones have failed).

I really would push for dermatology referral. They can offer things like light treatment which could help.

Honestly I know you mean well but comments like this do my box in

yes, we really do have to fucking put up with this. Phototherapy is not a guarantee of a cure- I’ve had it previously and it made no difference whatsoever. And I also said in my OP that it’s not possible for me because of the areas my psoriasis is affecting now

Thanks everyone for the advice. Sorry it wasn’t very clear from my OP but I’m under dermatology already 😞 sorry others are going through this too- it’s such a rubbish journey to be on isn’t it. I totally understand that they would be reluctant to try stronger treatments because it’s not widespread but it’s just the problem is the specific areas of skin it does affect is very severe and the pain and complications I get because of where it is. Argh, I hate this so much x

have you looked up gut health and psoriasis- hopefully you can get some relief from something.

I work in dermatology too and see many people with absolutely minimal psoriasis admitted to wards for treatment. However minimal it looks to us the point is that it is hugely affecting them psychologically. They don’t use public transport or swimming baths or show skin even in hot weather due to strong negative reactions from people ignorant of the nature of psoriasis ( most of the general population) The depression and anxiety caused by their life long condition often prevents them holding down a job and this has to be considered when deciding on treatment, not just what areas of the body are affected. Your dermatologist is not considering how your psoriasis is mentally affecting you so I’d be demanding to see a different consultant. In my trust there are quite a few derm consultants but only one has a special interest in and takes the lead on biologics. Find out who is that consultant in your local hospital and insist on seeing that one. Your current dermatologist is only looking at your skin, you need to be looked at holistically. Keep shouting, I have definitely met patients on biologics who didn’t sound as bad as you do. All those infections are unnecessary with the right treatment. I know it sounds bad but frankly in the NHS it’s the squeaky wheels that get the oil, you need to be polite but incredibly persistent. Good luck!