Psoriasis

LottieP25

Specialist started me on botox injections... big improvement all ready. Its great to actually get someone who is interested in helping you and not just firing any random cream at you to get you out the door.

Fell way less stressed since going to talk to the specialist.

Call Me Jimmy

I ran out a while back and was trying apple cider vinegar in the mean time. I've ordered some more. It was good when a flare up had wrecked my skin, but it effectiveness seemed to lessen during more normal times.

Gael23

LottieP25 wrote: »

Specialist started me on botox injections... big improvement all ready. Its great to actually get someone who is interested in helping you and not just firing any random cream at you to get you out the door.

Fell way less stressed since going to talk to the specialist.

Yours sounds like quite a severe case so you should really been referred to a specialist long before now because when things get to that stage you need more than corticosteroids. Were you told how much botox you will be having?

Agree 110% about seeing someone who wants to help you and make you as well as you can be. If you saw any of my posts in the last week you will see that I have lost my GP who has been that person you describe to me over the last year. He wanted to help me manage my condition in the best way possible although he couldn't cure it and its worked.
I have mine under control using creams and ointments but in the last year I have learned how to effectively use these and we were getting very close to the point where a long term plan could be put in place

GreeBo

Sudocrem warns about causing psoriasis on the side of the label from what I remember

LottieP25

Yeah he wrote it all down for me in my treatment plan, I will look it up. Basically every few months, to try and keep on top of it. He advised me that the cream I was been given all these years was wrong, and he gave me new cream to rotate.

Well if you would like this guys name just PM me. He is in Cork but he is lovely and advised me I could email him or contact him any time in the office should I need advise.

Gael23

LottieP25 wrote: »

Yeah he wrote it all down for me in my treatment plan, I will look it up. Basically every few months, to try and keep on top of it. He advised me that the cream I was been given all these years was wrong, and he gave me new cream to rotate.

Well if you would like this guys name just PM me. He is in Cork but he is lovely and advised me I could email him or contact him any time in the office should I need advise.

I'm fairly under control at the minute. Just need to get sorted with a new doctor sometime soon.
I just wish I didnt start what i'm doing now sooner. I was supposed to see the doctor a few months earlier than I did and now I kind of wish I didnt put it off so long.

rubadub

GreeBo wrote: »

Sudocrem warns about causing psoriasis on the side of the label from what I remember

Not sure about psoriasis but there is a warning for contact dermatitis. It is a similar enough condition, I had it on my feet as a child and get it the odd time now. Never had a problem with sudocrem.

I think this is one of those "rare cases" warnings. Googling sudocreme and dermatitis and everybody is talking about treating it with it, in forums and on sites selling it

https://www.pharmacydirect.co.nz/Sudocrem-Healing-Cream-250g.html

Sudocrem Healing Cream is Recommended for minor skin disorders such as:

- Nappy Rash
- Dermatitis
- Cuts and Abrasions
- Minor Burns (inc. Sunburn)
- Incontinence Dermatitis
- Eczema
- Scratches
- Bruising
- Chapped Hands
- Rough Skin

Eczema, Abrasions, Minor Skin Irritations

The healing properties of Sudocrem Healing Cream make it an effective treatment for minor skin disorders such as wounds, scratches, dermatitis, bruising, cuts and abrasions.

LottieP25

Got a few free samples of Zeroderm ointment, its very good. Used it only on my hands... only downside to it is its very oily.

ollib1984

Just thought id post an update guys. I was pretty down about this last time i was on here.

Still havent been diagnosed with psoriasis. there was a big improvement in the rash areas they all more or less went in the last 6 or 7 months. cleaned up the diet alot. less junk food definetly helps. only water definetly helps.
good nutritious food helps.

its started to come back a small bit at the minute but ive got sloppy.

the medications got rid of it too, I was on a different cream at the time of writing but I am now on betnovate.
its very strong and good and a tube lasts months for me now. very powerfull and effective. the other creams i used seem to decrease in strength and repair time the more you use them. not betnovate.

also shampoo cleared the hair issue up pronto, i had hair falling out and ****. thats doing much better now too.



doing well with what im using at the minute, good shampoo smells awfull but classy stuff. not like that acid **** in tesco/aldi.
creams i use are combo of thick boots moisturiser and the betnovate 100G. just glad i know i can get rid of it

sligoface

Aaaah, I've got it again really bad. All around my groin, making every movement painful, plus small plaques all up and down my legs and arms and back again which were all totally clear a month ago. Can't figure out why though I haven't been taking my salt baths or using the UV light much lately. Though perhaps it's due to eating too much bread and pasta. Unfortunately I don't have either the money or willpower to stick to the Pagano diet completely.

One area I cannot get clear is my ears, I have thick plaques on the inside of my ears, like where the earhole is and I have to soften and remove them every day because I'm afraid they could affect my hearing otherwise. Also on the back of my ears where they connect to my skull.

So sick and tired of this disease. The worst part is no one really understands how bad it hurts and since it is only visible if I choose to show someone, and they won't know I have it at all unless I feel comfortable enough to tell them, they won't know why I hate to get up and move or am so grumpy during a flareup. So they just think I'm a lazy A-hole. And showing someone just to prove I'm in pain is not worth the embarrassment.

I know this sounds ridiculous, but the other day I actually said I would rather have cancer than psoriasis. I'd rather go through hell, suffer greatly but either die or get better, than suffer every day for my whole life with the pain, itch and embarassment I have from psoriasis. At least when you have a terminal illness people say how brave you are, they wear ribbons for you and post nomakeup selfies for you. You get no credit at all for living with psoriasis, people just see you as a gross scaly flaky person who they don't want to touch. I don't mean to insult anyone with cancer, just really frustrated because it seems like no matter what I do, no matter how much money I spend on stuff to treat it, I'm forever cursed with this condition which makes my life so difficult, and sometimes makes it impossible to enjoy life at all.

Psoriasis should be classed as a disability.I've had to miss work and even leave jobs because of this condition, because either the stress or other factors like the uniform, the heat, being on my feet all the time made it flare up so bad. It's affected my confidence as regards dating and also affected my ability to have intimacy with my partner. I've been so depressed because of it, and in such physical pain from it, that I had to stay in bed for days at a time. All major medical associations say there is no cure. So how the hell can I be expected to work like a normal person?

I wouldn't wish this on my worst enemy. It's just neverending freaking torture.

Red Nissan

sligoface wrote: »

Psoriasis should be classed as a disability.I've had to miss work and even leave jobs because of this condition, because either the stress or other factors like the uniform, etc

In fact it was up to a few years ago, my own wife who suffers as bad as yourself was on disability and treatment and had it somewhat under control until she was cut off and also lost the medical card.

Mountainsandh

sligoface wrote: »

I wouldn't wish this on my worst enemy. It's just neverending freaking torture.

I think we all get what you're saying here, Sligoface, we all go through these moments.
Good luck with yours, I really hope the groin especially gets better, that must be awful.

My worst spots for pain are the hands and feet (and arms actually), but even with just that, I've had many days waking up in pain, and getting very distressed throughout the day because no matter what I try, the pain is still there. I feel like a freaking glass bones woman sometimes going around, because the least bump or graze on my hands draws blood. My wedding band draws blood at the slightest bump.
It's a small thing but I'm forever bound to use electric hair removing thingies, because trying to shave my legs is like filming a remake of Psycho in my bathroom, and then all the bits that bled redouble in skin making efforts.
I have it on my ears too, but for me it's on the shape of the ear, not the back, and a bit inside, same as you for the hearing.

You are right, there should really be at least some kind of status for psoriasis sufferers. I've never taken a day off work specifically for that, because no matter how rotten I felt, in my mind it would be like doing something I'm not entitled to.

That's silly because really, it does affect your work when you're feeling rotten, and like you said, I can imagine people would have to let jobs go, or lose jobs, because of the psoriasis.

Also, I have no medical card. That's ok since I don't like the medication very much and have gone off that, but if I did wish to follow a treatment, that would be very costly.

Gael23

sligoface wrote: »

Aaaah, I've got it again really bad. All around my groin, making every movement painful, plus small plaques all up and down my legs and arms and back again which were all totally clear a month ago. Can't figure out why though I haven't been taking my salt baths or using the UV light much lately. Though perhaps it's due to eating too much bread and pasta. Unfortunately I don't have either the money or willpower to stick to the Pagano diet completely.

One area I cannot get clear is my ears, I have thick plaques on the inside of my ears, like where the earhole is and I have to soften and remove them every day because I'm afraid they could affect my hearing otherwise. Also on the back of my ears where they connect to my skull.

For the Groin area, I have used Dacktacort in the past, you need a prescription for it though. I usually only get dery, flaing patxches on my ears and E45 cream works but I can't offer advice on how to treat plaques there as you have to be careful on using Dovobet on those areas.
I think you need to see a doctor for more professional advice, and from your post I get the feelong you feel a bit down about it, which I can totally understand. But I think for sufferers with the more severe cases, you need medical advice and if needed, to be referred to a specialist. I think pagano and the likes do help keep it at bay but when things get out of control then they are not so useful

sligoface

The thing is doctors can do nothing other than prescribe steroid creams. I've been on the waiting list for a dermatologist (public) for three years, but they can't do much either. I'd say I know as much about psoriasis as any qualified doctor, I've been researching it for many years. Some other treatments, like Humira, are way too expensive unless you have a good private insurance plan, and have really bad side effects which get worse over time and you have to take the injections forever.

Not only have I had to miss work because of it but it has affected my job performance often on many days that I was present, because the pain and itch distracted me and slowed me down, meaning I was sometimes looked at as less productive and passed over for promotion. I was afraid to mention it to supervisors in case they would try to get rid of me. My feet especially get itchy if they don't get air after a while, unfortunately you can't really be taking your shoes off at work!

I feel a bit better today, had an epsom salt bath last night and used my UVB unit. Gonna have a dead sea salt one tonight, having both close together usually helps get rid of the pain and itch, especially in the groin which is the absolute worst.

Call Me Jimmy

Do you find the epsom salts any use? Is it purely to relieve the itch?

Thanks for your posts, they are a reminder that this (my problem isn't as bad as others, but when it happens it's on my face so ye can't miss it) disease is a disease, I'd often given myself a hard time over being restricted by it saying what my parents say 'it's only a bit of redness', but taking it more seriously and processing the fact that it can be very hard to live with has helped.

brevity

Try and get some Coal Tar Ointment, some chemists stock it but it can be hard to find. It's helped me an awful lot especially with the itching.

Red Nissan

sligoface wrote: »

The thing is doctors can do nothing other than prescribe steroid creams. I've been on the waiting list for a dermatologist (public) for three years, but they can't do much either. I'd say I know as much about psoriasis as any qualified doctor,.

Or consultant for that matter too. IMO.

Gael23

Are you using the steroid creams sligoface?
I know I seem to be advocating them alot in my posts but when you are suffering that much I really think its the best thing to do, if only for a few weeks. For the past year, I use it twice weekly all the time for maintenance but when things are as bad as you describe, I would be using it daily for a good 2 weeks at least.

Gael23

Call Me Jimmy wrote: »

Thanks for your posts, they are a reminder that this (my problem isn't as bad as others, but when it happens it's on my face so ye can't miss it) disease is a disease, I'd often given myself a hard time over being restricted by it saying what my parents say 'it's only a bit of redness', but taking it more seriously and processing the fact that it can be very hard to live with has helped.

What do you use on your face? I use an ointment called Protopic which is the best thing I have ever,ever used. It is harder to live with on the face because you can't hide it. Even still, when I have the dry flaking patches under control, I do have some redness but that's getting less and less.
I'm going through a bad patch at the minute. I've got myself mixed up in a bit of a mess which is causing me a lot of stress and it's showing on my skin. added to that I haven't been well with other things recently so I missed days of applying creams and that.

Call Me Jimmy

Hey ryan, I've tweaked my routine and now am on to an absolute winner. Protopic I found the best of the prescription creams by a mile.

I am now using aloe vera gel and apple cider vineger together in water for two days and it has just sorted my face out. It seemed to dry out the patches around my nose (not to mention soothing) and the texture of my skin is really good. I can actually see the 'skin' where the patches usually are if ye get me? I can see the pores the way I can see them on other parts of skin and in a couple more days I can see myself being completely clear.

Will keep posted. The only reason I don't say 'go out, get these things and use them' (apart from being medical advice) is that I have always thought it possible that it might not actually be psoriasis and someone might get disappointed. But I've had dodgy red patches on my face for years now and after a lot of experimenting I think it's finally clear and I can use this aloe vera gel, acv, water for the rest of my life.

LottieP25

Pro topic is brilliant only using it with the passed month. Best cream by far and I've tried them all!

brevity

Ya the protopic is good, cant use it at the moment though because I'm getting light treatment.

michael999999

brevity wrote: »

Ya the protopic is good, cant use it at the moment though because I'm getting light treatment.

Is protopic prescription only?

brevity

michael999999 wrote: »

Is protopic prescription only?

The one I'm using is prescription only anyway.

Gael23

Call Me Jimmy wrote: »

Hey ryan, I've tweaked my routine and now am on to an absolute winner. Protopic I found the best of the prescription creams by a mile.

Will keep posted. The only reason I don't say 'go out, get these things and use them' (apart from being medical advice) is that I have always thought it possible that it might not actually be psoriasis and someone might get disappointed. But I've had dodgy red patches on my face for years now and after a lot of experimenting I think it's finally clear and I can use this aloe vera gel, acv, water for the rest of my life.

I'm not sure if mine is actually Psoriasis either as my last GP dealt with it and I never saw a dermatologist about it. Will be soon though i'd say now that he's gone.
Aside form that its probably the best thing I have ever used, and safe.Well the 0.1% is , the 0.03% is useless for me . I might try using it on my body for a while even

michael999999 wrote: »

Is protopic prescription only?

Yes it is prescription only.

Call Me Jimmy

Great to hear you're getting relief ryan!

With the protopic has it gotten to a stage where your comfortable about the skin now?

LottieP25

The difference in mine is mad, i would post up before and after pictures, but yano wouldnt want to make ye vomit!

Gael23

Call Me Jimmy wrote: »

Great to hear you're getting relief ryan!

With the protopic has it gotten to a stage where your comfortable about the skin now?

Yes i do but its ongoing maintenance really.
Im on a maintenance dose of once a day on Monday's and Thursdays to keep it that way. Then if i get a flare up.I use the prescribed dose for up to 5 days. So you can't just stop it if you get me.

Orlacmx

I have a very itchy scalp for years. It drives me mad, especially at base of scalp at back above neck... always under the hair only. Funny thing is it started about 10 years ago after I used a hair colour called Viva (once only)..and I coloured my hair a lot before that and no irritation. Could it have triggered it? Maybe that is nothing to do with it but I don't see it on the market any more. Interesting. After I towel dry my hair using medicated shampoo, it itchy again! No good there. Know someone that used Betamousse but only temporary relief and can reoccur after treatment over. There is also a serious amount of chemicals in any shampoo, just look on the bottle..why??? Baby shampoo probably a better option and don't apply conditioner on scalp either. Lots of chemicals there too. I know for a FACT my scalp gets a lot more itchy when I drink BEER and especially Guinness. That is a definite! Very itchy now and had 2 cans of Guinness hours ago. Scratching all night! It can start after first pint or be extremely itchy all the next day. It MUST be the yeast in it. I only drink once or twice a week. Going to cut right down as I cannot stand it any more. Very bad when your nails are strong as it can scratch scalp. Will see does that make a difference. Doc gave me shampoo for seborrhoeic dermatitis the other day even though I TOLD HER it was scalp psoriasis so I'm not using it and it said it could affect hair colour - no there as going on holidays abroad in few weeks. I am a bit stressed as I have sick relative so that could be something to do with it too. Could also be diet but not sure. I am cutting out yeast for a while and drinking a lot of water. I did try coconut oil once but it was very difficult to get the grease out of it so no more. Was told apple cider vinegar could work but in another survey told to keep away from it as has yeasty ingredients so afraid it will make scalp worse! Also cutting out processed foods so overall better lifestyle choices! It is related to the immune system too. Diet is very important. PS. smoking bad 4 it too so quitting! Decided to write this as the itch was keeping me awake. Now going to get some sleep hopefully. Sorry 4 essay! Bye

wonga77

exorex shampoo works best for me, put it on, leave it soak in for a few minutes, you need to use some king of coconut oil based conditioner afterwards, otherwise you dry out the scalp too much