Am I an annoying patient?? GP / DOCTOR / NURSE QUESTION

[Sausagedog3]

I’ve had a problem with my skin for several years now. It started out of the blue and I had massive patches of weeping, oozing, scaly skin on my scalp, face and ears. I’ve posted about it before.

I’ve had countless appointments with the GP and nurses and everyone has been so nice and helpful, but I feel bad as I’ve taken up a lot of appointments. I was referred to dermatology but obviously with covid and waiting times it was around a year and a half and in that time I had countless appointments at the GP surgery because it kept flaring up again. We tried so many different antibiotic tablets, steroid creams, emollients and all sorts of shampoos and other things. We even tried antifungal tablets too. I tried hibiscrub, different elimination diets in case something in my diet was causing it, everything I could buy off the shelf. Some things helped initially but then it would just flare up again.

Once I was seen at dermatology (recently) they diagnosed it as psoriasis and gave me some stronger steroids which worked initially but then stopped. I’ve tried to get in contact with them to ask for another appointment as it’s flared up again but there’s a massive waiting list for appointments and understandably something like psoriasis isn’t urgent or as serious as other problems. I think I’m just supposed to go back to my GP again in the mean time. But I feel so embarrassed going back because I’m being that person who keeps coming back again and again. I’m also a massive over thinker and worry myself silly about nothing but I just felt so bad going back again and I didn’t want to be a frequent flyer that you always hear people talking about, but at the same time, it’s all flared up again and I’m really upset about it all. am I being a frequent flyer by going back again?

I could actually burst into tears- it’s all over the back of my head and my hair is literally soaked and tangled with liquid from the wet patches. It’s starting to move from my head to my neck and ears now too. I’m so worried because nothing seems to be helping it and I’ve followed all the instructions about applying the treatments. I just want it to stop 😢

Have they tried you on biologic medications (adalimumab or similar)? If not that’s what I’d be asking for as they tend to be very effective. I have a coworker with psoriasis that started on them and was fully clear in about two months.

They are expensive though. I’ve been out of the UK for a few years now so I’m not sure how the NHS is handling stuff like that. You might have to jump through some hoops and it’ll probably move at the usual snail-like pace of the NHS but it would be worth it.

Dermatitis herpetiformis?

www.coeliac.org.uk/information-and-support/coeliac-disease/dermatitis-herpetiformis/

Doctor married to another doctor here, and of further interest to you, with a best friend, yes, yet another doctor, with severe psoriasis and psoriatic arthritis.

I can assure you that you're NOT an annoying patient. Psoriasis can vary from mild and easy to treat to appallingly disabling and unresponsive all treatment, with everything in between. The more severely affected patients may need to be on heavy immunosuppressants and/or biological medicines which are usually monoclonal antibodies which modulate the immune system. The side effects and the cost of some of these can be pretty high so they need to follow a stepwise approach to treatment in accordance with NICE guidelines, local prescribing contracts etc, but not your primary and secondary care doctors will be desperately hoping to make you better. They'll be annoyed with the pathological processes, they'll be annoyed that your immune system isn't responding to the less destructive treatment, they'll be annoyed with themselves that they've failed to treat you, but they will NOT be annoyed with YOU. I can assure you of that from personal experience of being a doctor and treating patients.

Hope this helps settle your mind a little. 🙂

Keep harassing dermatology is my advice. That looks so sore. I get guttate after a throat infection but I consider myself very lucky in that it goes away for a bit after four months or so. I end up covered head to toe in itchy spots. If it's itchy by advice would be a bath with apple cider vinegar (although it looks like yours are open wounds so probably not ideal but may help if they heal enough) or put a sock filled with oats in a bath. Dead sea salts are also something I've used and meant to be good. A lot of research points to gut health and a lacking of specific strains. I'm pretty certain ones is lactobacillus rhanasmos or something along those lines. A good probiotic could help maybe. There are biologics available for psoriasis, and UVB treatment. If finances allow could a UVB light be an option in the interim? I'm so sorry you're dealing with this. It's a vile disease and I can only tell you what I've learnt and offer virtual hugs.

My dad has that and has steroid injections and phototherapy.

He uses all the t gel, zinc, emollients under the sun and not yet found one that works.

Have you been swabbed/biopsied op? My dad has had that all done so he knows it's psoriasis but there's a condition linked to celiacs disease that can cause skin conditions.

That sounds rough! I had a similar thing a few years ago and getting appointments with dermatology was like pulling teeth. My suggestion would be to be keep ringing dermatology secretaries to chase up appointments- don’t be afraid to be persistent! I think sometimes a lot of people don’t realise just how miserable and uncomfortable skin conditions can be. I did speak to my GP and they wrote a letter to the consultant asking them to see me asap so may be worth a shot too?

I ended up getting started on immunosuppressant injections in the end which have been an absolute god send- might be worth having a discussion about whether this would be a possibility for you. I’d also exhausted, tablets, light therapy, creams etc..

good luck x

I have seborrhoeic dermatitis on my scalp and it looks like your picture, wet as well. I use capital therapeutic shampoo

Capasal sorry. Stupid autocorrect

I saw your previous threads, I'm sorry things haven't improved. I'm no expert, only my own skin condition to go off, but surely the gp should be helping you treat these as open wounds rather than a typical psoriasis flare?? Mine was much less open and sore than yours and it took 6 months of daily treatment to get to a point it could be controlled with OTC meds, steroids and shampoos. You are still at square one and need to get the wounds healing before you can treat the cause, in my non expert opinion.

Sorry you obviously know that but I don't understand why the gp isn't going down that route too.

Can your GP chase dermatology for an appointment? Sometimes hospitals take more notice of a GP saying something is serious than the patient.
Have you been to PALS to see if they can help with getting an appointment?

I would definitely phone the dermatology nurses. If you don't have their number, call the hospital switchboard and ask to get through. Dermatology are used to treatments not working or sudden flare ups, they aren't going to think badly of you and would, if they have the capacity, far rather treat you before it gets even worse.

severe skin problems are linked to higher rates of suicidal ideation and suicide. The constant itching and pain can lead to sleep deprivation and mental health problems.

Don’t feel guilty about advocating for yourself. Treating this issue before it gets worse means you may utilize fewer system resources overall.

there is a reason that my US insurance company pays for my ridiculously expensive biologics medication and it isn’t to be nice. It’s because the algorithms tell them that treating my skin condition properly will be cheaper than covering my care if my skin gets severely infected or I have a mental breakdown and end up on the psych ward.

I would contact PALS at the hospital you were referred to. If you weren’t discharged you should not need to go through your GP again.

Agree with PP about derm conditions and effect on mental health. When I was under dermatology we had access to a psychologist who specifically worked with dermatology patients to help us cope with the stress of it all

Best of luck OP

The ginger shampoo from the body shop really helped my friends scalp psoriasis, may be worth a try

I was thinking dmards as well ! I know someone with psoriasis and there on low dose of methotrexate it’s an immune system response so get yourself referred to rhumatology x

If derm has made a concrete diagnosis then the gp should be able to get it under control. Make an appointment face to face with gp and take in all the creams you are using to the appointment. Then keep going back until it's under control

Is a private dermatology appointment an affordable option for you if you can't get a speedy NHS appt? You really aren't a problem patient, you're someone in desperate need of specialist healthcare.

I have psoriasis all over my scalp, and it’s usually more dry and scaly, unless I pick it (which I do when I’m stressed!) The psoriasis leaves it more open to infections though; the pic you put up looks like mine did when it was infected- oozing, weeping. Have you tried a course of antibiotics?

I’ve suffered with it on my scalp for about 20 years and although dermatology were helpful in the beginning, I’ve been treating it with a weekly dose of steroids (Elecon ointment) and DIY light treatment. It doesn’t completely go away but keeps it manageable. Hope that helps. It’s horrible and sending you hugs.

That looks very inflamed. Have they given you the special shampoo that you need to soak u
your scalp and then rinse. Psoriasis is an autoimmune condition so any stress in your life could trigger a flare up.
try and have a look for the letters you have and contact the consultant secretary. The dermatology nurse may be able to help

I get psoriasis on my scalp primarily which is why I decided to go grey rather than wait for a good day to dye my hair. I tried everything, I’ve found Philip Kingsley shampoo for itchy/flaky scalp is good insomuch as I don’t react to it. There are some brands that I swear that my head starts itching if I look at the bottle. I made the decision a few years ago to stop the steroids and creams as regardless of what I was using, if I’m going to have a flair up I will anyway. I try my best to not let myself get stressed as that triggers flare ups. It’s horrible though, I feel your pain and sympathise

Have you had allergy tests?
I had eczema type rashes come up all over my legs once and for six months I couldn’t shift it - it was agonising, constantly itchy and nothing eased it. I have a non-severe nut allergy, but didn’t connect this rash to it as it’s always been a reaction in my mouth. It turned out to be the muesli bars I was making for my partner which had pine nuts in were affecting me despite not eating them myself. As soon as I removed all nuts and asked my partner to not eat them, within 2 weeks the rash had completely gone.

Over the pat two and a half years I've been under the local dermatology department. Appointments have been hard to come by. I've never been able to speak to a consultants secretary, however I have emailed the department saying fao Dr.... and copying in other doctors, head of department and PALS. I also once rang the department and on finding out that I didn't have an appointment for about six months, burst into tears and they gave me an appointment in about four weeks. Just keep pushing, I'm now on a very expensive treatment which seems to be working. Good luck.

That looks nasty OP but I doubt your GP can help.
I have psoriasis on my scalp and ears which has flared up for the first time in years. I also have RA and didn't realise they might be connected. I use betnovate scalp lotion on prescription but I see you have tried that. I also know how frustrating it is when people think you just haven't used the right shampoo.

@Commendatore I'm interested in your DIY light therapy as mine is much worse in winter and I suspect sunshine helps?

You might need to explore an anti-inflammatory diet. Psoriasis isn't actually a skin condition, it is an immune system condition which affects the skin. Your immune system is overactive. That's also why stress makes psoriasis worse. I get awful flare-ups when I eat a lot of sugar, tomatoes and potatoes. Cutting out the things that cause an inflammatory response, along with the topical treatments, will help calm things down. Try an antifungal shampoo like Nizoral, just in case there is a fungal infection going on too.