Saying hello and asking for advice with inverse psoriasis

[Grizzly Bear]

Hi Kath

to the loony bin

I'm the insane on here

Have no fear, GB is here


Right young lady, pay strict attention, okay ?

Steroids are fine but to a certain point.

Wean yourself off the steroid creams and in the meantime grab yourself some coconut oil.

Bionia is the best stuff and it's not only natural, a fantastic moisturiser but it has healing properties too.

You buy it off fleabay, and that other well known site beginning with A.

As others have said, get an appointment with your GP and demand a referral with a dermatologist.

Enjoy yourself on here Kath and ask anything you wish to know

[Kpthenut]

Hi Kath and welcome to our club 
Fred is absolutely bang on. Having had psoriasis that long you are entitled to some real relief. Your GP let alone a practice nurse just can't give you the treatment you need. You really need to see a dermatologist. Insist. Jump up and down scream cry whatever is need in your neck of the woods. From the GP my journey took me to a clinic where a GP who had a Dermy specialism gave me all sorts of lotions and potions before they put me up to a proper Dermy so I could go for UVB, they can't proscribe that. Then more creams and PUVA until I gave in and started on systemics. You need to fail on each before you go on to the next phase. It can be bloody frustrating but they have to follow the nice guidelines. The first they will offer is Methotrexate some people get on with it a lot don't.
Please don't be afraid to ask anything we will try to help as best we can. Just bear in mind we aren't medically trained but all have gone through it.
When you go to see anybody I would strongly advise you take somebody close with you, other half friend even parent. It is surprising the difference you see if it shows you aren't the only one that is suffering with this disease

Thanks John. It has been such a long time since I've needed professional help. My psoriasis was at its worst in the 70s. I was one of the first to have PUVA whilst it was still in the trial stage. It was brilliant. That was the last time I had a dermatologist.

Since then I have managed it myself. Guess it's time for me to big up and ask to be referred again. Must admit, it's getting to me x

[Kpthenut]

Hi Kath  

 to the loony bin  

I'm the insane on here  

Have no fear, GB is here


Right young lady, pay strict attention, okay ?

Steroids are fine but to a certain point.

Wean yourself off the steroid creams and in the meantime grab yourself some coconut oil.

Bionia is the best stuff and it's not only natural, a fantastic moisturiser but it has healing properties too.

You buy it off fleabay, and that other well known site beginning with A.

As others have said, get an appointment with your GP and demand a referral with a dermatologist.

Enjoy yourself on here Kath and ask anything you wish to know  

Bless you and thanks for the welcome. I'll definitely try the coconut oil, I've used almond oil with success on my hands in 2011, but that was plaque. I know where I am with plaque but inverse is is completely different x

[JohnB]

Hi Kath and welcome to our club 
Fred is absolutely bang on. Having had psoriasis that long you are entitled to some real relief. Your GP let alone a practice nurse just can't give you the treatment you need. You really need to see a dermatologist. Insist. Jump up and down scream cry whatever is need in your neck of the woods. From the GP my journey took me to a clinic where a GP who had a Dermy specialism gave me all sorts of lotions and potions before they put me up to a proper Dermy so I could go for UVB, they can't proscribe that. Then more creams and PUVA until I gave in and started on systemics. You need to fail on each before you go on to the next phase. It can be bloody frustrating but they have to follow the nice guidelines. The first they will offer is Methotrexate some people get on with it a lot don't.
Please don't be afraid to ask anything we will try to help as best we can. Just bear in mind we aren't medically trained but all have gone through it.
When you go to see anybody I would strongly advise you take somebody close with you, other half friend even parent. It is surprising the difference you see if it shows you aren't the only one that is suffering with this disease

Thanks John. It has been such a long time since I've needed professional help. My psoriasis was at its worst in the 70s. I was one of the first to have PUVA whilst it was still in the trial stage. It was brilliant. That was the last time I had a dermatologist.

Since then I have managed it myself. Guess it's time for me to big up and ask to be referred again. Must admit, it's getting to me x

Sadly this won't sort itself, and if it is getting to you then it's only going to get worse. Ps has a voracious appetite and stress feeds it better than anything

[Fred]

stress feeds it better than anything

Yep

[Grizzly Bear]

I heartily concur with the other two village idiots chaps, try not to stress out to much if you can.

I know it seems overwhelming on here as a newbie like yourself Kath but don't worry, ok, we will do our best to help you with any questions flower  

[jiml]

Hi Kath and Welcome to the club I see you have already had some good advice  I have not had inverse . But I will add my twopenneth .
You should take care using  steroid creams in folds of the skin over a long period  ...it will be like occlusion and make them stronger ....... certainly get in touch with your GP  demand an urgent appointment ... explain to the doctor the steroid creams are causing you problems
I won't go over what everyone else has said except I'm glad you have found us and I hope you find the site useful and interesting

A great way to stay in touch is to subscribe to our free monthly newsletter you can do that by clicking Groups and click on join group

[Maryam]

Hi Kath,

Welcome to the club! I see you've been struggling for years without professional help, so I agree it may be time to see a dermatologist.

Inverse psoriasis is a b*tch. I am a little bit surprised you got steroids to treat the spots, the riks of thinning skin is big.

I used creams with zinc oxide every now and then. It will dry out the spots and helps with the itching. The only prescribed cream I was allowed to use is "protopic", but it could have another name in the UK.

Hope you'll get a referral asap!

[Wooley]

Hi everyone. My name is Kath. I have had psoriasis since I was 4. I am 57 so basically all of my life. However, for the first time I have inverse psoriasis and I am really struggling.

Sorry, this may be too much information but it is under my boobs, in the fold of skin under my stomach, at the top of my bottom and even in my belly button. It is very red, inflamed and wet.

I hate steroid cream but am trying it. I was wondering if anyone had any ideas of what had helped them.

Thanks in advance xx

Hi Kath and welcome to the club!  Sorry to hear you are suffering a bit at the moment, but agree with all who say try and get to see a dermatologist who will hopefully be able to talk to you about options etc.  I am not familiar with inverse psoriasis but hopefully you can get the correct treatment/advice soon....

This is a great club with lots of lovely people offering good advice and above all lots of support if/when you need it......welcome again.......

Wooley x

[Turnedlight]

Hi nice to meet you!

I have developed a healthy respect for steroid creams, they can thin the skin through long term use (especially strong ones) and it doesn't seem to return to proper thickness even years later. On the other end of the scale, I was once told by my derm I could use the 1% over the counter steroid cream even on my face without worry. If I do, it's only ever for a very short time and using a cotton bud for precise application.

Personally I would be tempted to do the short course of treatment on the inverse p, especially if you haven't used the steroids on those areas before.

I agree, it sounds like it's time to ask for a derm referral. But I wouldn't necessarily be too frightened off by the steroid cream, if you apply regularly for the time given, as directed, not thickly (but not way too sparingly either or it may not work) you may find the inverse p completely resolves. At the end, you taper it down to every other day etc so there's no sudden stop.

Good luck, hope you get some proper help soon!