Pustular psoriasis advice needed

[Alleyes]

Hi there , I hope you can assist me in some way please with some advice , I have had Pustular psoriasis since 2016 and my latest GPP is ongoing since 23rd January 2025 , I am glad it isn't as bad as it was but at its worst I was sent to hospital twice being told I needed IV but was sent home which surprised me given the state my skin was also had cellulitis in both legs and feet , the antibiotics (3) different types didn't do anything , I started reading about Metformin being a help with all psoriasis types , I have asked my diabetic nurse and she hadn't even heard of pustular psoriasis infact 2 out 3 doctors I have visited hadn't either , this is a concern that there clearly isn't enough of any knowledge on pustular psoriasis and/or GPP , I get that it is rare but that doesn't mean its any less dangerous!
I don't mean any disrespect but because there is such a lack of knowledge from medical professionals I have had to come on to this forum to find people that have knowledge first hand along the lines of what is the best medication available in UK because nobody in medical profession seems to be able to help or even heard know what GPP is ! 
I'm in my 10th week and still having outbreaks of new pustules daily on various parts of my body and would appreciate any advice you could offer please .

[Fred]

Hello Alleyes  to Psoriasis Club

I've not had pustular myself, but it sounds to me that you need to see a dermatologist about it. A GP isn't well suited to help you, so ask demand they refer you to a dermatologist.

This post may help a little Pustular Psoriasis

[Alleyes]

Hi Fred thanks for reply , well that is another saga , I have been asking for an appointment for 2 years and only when my doc had misdiagnosed twice I mentioned to him about pustular psoriasis flare , he just looked puzzled and I know he did a bit of digging into my medical records because he called me that afternoon on his private mobile apologising for misdiagnosing and asked me to come back so he could take photographs as he hadn't ever seen anything like it then said he gave me an urgent referral for dermatology on 30th January.......only just got a letter informing me 2nd May is my appointment,  its clear he doesn't get what a GPP is , he has given me Betamethasone and more Hydomol but it isn't cutting it , need something stronger and it's messing with my blood sugar because of inflammation,  I'm honestly in shock that this isn't been made more knowledgeable to medical profession Fred .

[Fred]

My guess would be because it's rare it's not talked about much in training and even if it is some GP's may never see it so they forget.

Good luck with your appointment next month, arm yourself with as much information as possible but putting "Pustular" in our search here Search and tick the box "search titles only" there is a couple of pages to check out.

[Kat]

Hi Alleyes.

Sorry it took so long to get an appointment to see a dermatologist. Hopefully you'll get some treatment that works but that doesn't really help while you are waiting. You will find that some here get a little relief using coconut oil. I found it soothing.

I have been on Metformin for blood sugar before and I didn't notice any improvement with my psoriasis during that time. I'm not sure why it would be used to treat psoriasis, but then I'm not a doctor.

Good luck and glad you found your way here. There's lots of good information on this forum!

[Alleyes]

Thank you Kat , hope you are well ?

[Kat]

Thank you Kat , hope you are well ?

I'm good, thank you

The metformin made me curious and I do see where there is some thoughts due to the connections between blood sugar and psoriasis. No large scale studies yet but it's interesting at times reading how different medical conditions can tie in with others.

Hang in there!

[Alleyes]

Well here in Scotland Kat , we don't see this big bright warm thing in the sky very often , think people call it the sun ? Scotland as you may know is not known for sun but now if you needed rain we could give you that for free but Trump may put a tariff on it   Nice and sunny today but drops to minus later , hoping the hurricane swerves past Georgia

[Turnedlight]

Hi - I’m sorry to hear your struggle to see a dermatologist, I remember it took me ages to convince my gp to refer me.

But I’m not that surprised the gp doesn’t know all about it, unless they have dermatology training. Which is why it’s so stupid that they resist referrals. I don’t think they can imagine the impact it has on your life, they look at your skin and think, oh that doesn’t look nice but they just don’t grasp the chronic pain, itching, lack of sleep etc.

Have they tried you on prednisolone (steroid) tablets yet? Whilst it’s not ideal to be on it, it saved me from a bad outbreak of psoriasis which went red and hot, I believe it was erythrodermic.

I was on that a few months whilst waiting to go on more standard psoriasis treatment. I actually went private for that outbreak, paying for one consultation with a derm. who then transferred me back to the nhs for the actual treatment. I was already under the nhs derm at the time, but they had dismissed my severe symptoms with a tube of eumovate, and I was desperate.

I hope you get help soon, at least they have now referred you.

[Alleyes]

Hiya , thanks for reply and agree with your comments,  it's just frustrating that medical professionals aren't trained on the health and diseases of our biggest and most important organ .....our skin , 2 out of 3 docs had never heard of pustular psoriasis or GPP and when one of them that called from his own mobile to apologise for misdiagnosis twice , I think he realised how serious it can be , even dermatology were scratching their heads on this and only when they did the biopsy back in 2016 they twigged , believe it or not they have only ever gave Betamethasone and occasionally Fusidic over the years , I wasn't very good and my gp sent me to hospital A&E with a letter suggesting IV meds  but was sent home because they wouldn't commit to what it was , so when I go to dermatology on 2nd May I will be better prepared and want to know why this condition although rare isn't being paid the due care and attention that it deserves given the dangerous affects from a GPP flare .