Psoriasis

Always Tired · 22-07-2019 1:20am

Rizzee what age are you?

Psoriasis tends to start on places other than the face and scalp, it can shift there but most common is to have either a different skin condition (dermatitis) simultaneously on the face or have the face be mostly clear. I have it behind my ear but didn't get that until after 15 years of having it other places.

It tends to start on places that are covered, as the lack of sunlight plus skin not being able to breathe or being in contact with an irritant (like synthetic clothing) exacerbates it. So often back, feet, legs is where it starts or (for another reason ive forgotten) outsides of joints, elbows/knees. Hands too due to being exposed to a lot of irritants like soaps

The symptoms can be similar to lots of skin conditions but psoriasis patches or plaques are pinkish red with a white almost silvery scale like a scab which is a bit different to normal dry skin.
Tbh if you haven't had plaques on your hands, elbows, back or limbs, I doubt it's psoriasis but another condition with similar symptoms.

Have you been under stress, drinking a lot, eating a lot of sugar/carbs/fried food? Have you ever used hydrocortizone or steroid creams on your face (dont). That can trigger breakouts for a lot of skin issues. I dont want to get drawn into the various controversies but IMO start with cutting down those and some simple over the counter remedies before spending loads. I found derms useless personally, those that seem to have gotten clear with them generally havent until after many trips lotta money spent and finally being prescribed biologicals. the UV treatments only work temporarily.

I use a sulphur soap bar i got from amazon to help skin flaking from perioral dematitis. Use a cup of dead sea salts dissolved in water to rinse off. Ive also used both Dead Sea Spa Magik brand dry skin ointment (its clear) and Elizabeth Arden 8 hr cream (pricy but worth it, little goes a long way) on my face to help with redness and flakiness and both are very good and don't irritate (literally almost anything will irritate my face due to the PD). I have also used mud masks by dead sea spa magik which are good.

Ive seen some people posting about using LaRoche posay on their face, I found it to be an awful irritant personally, and the pricey chemical cocktail (loads of unpronouncable ingredients) rubbed off in little balls/clumps.

skooterblue2 · 22-07-2019 1:25am

Always Tired wrote: »

Rizzee what age are you?
Have you been under stress, drinking a lot, eating a lot of sugar/carbs/fried food?

Nasty cocktail but the stress is the start that drives the other parts.

siblers · 22-07-2019 4:23pm

Any recommendations of a dermatologist in Cork City? I've private health insurance for what it's worth. Can I make an appointment directly or would I be better to go through my GP for a referral to a dermatologist?

Gael23 · 22-07-2019 4:51pm

siblers wrote: »

Any recommendations of a dermatologist in Cork City? I've private health insurance for what it's worth. Can I make an appointment directly or would I be better to go through my GP for a referral to a dermatologist?

You have to go through your GP. I cant recommend you anyone in Cork but you must get a referral from your GP

Jellybaby1 · 22-07-2019 9:03pm

A family member was told by their GP they need to see a consultant and when asked for a referral letter was told they have no hope of getting an appointment in the hospital and they have to go private which they can't afford. I intend paying for this on their behalf, however, they still can't get a referral letter because they were told by the GP they have to get the appointment with the consultant first, then they will get a referral letter. This surely can't be the right way to do it.

brevity · 22-07-2019 9:57pm

Jellybaby1 wrote: »

A family member was told by their GP they need to see a consultant and when asked for a referral letter was told they have no hope of getting an appointment in the hospital and they have to go private which they can't afford. I intend paying for this on their behalf, however, they still can't get a referral letter because they were told by the GP they have to get the appointment with the consultant first, then they will get a referral letter. This surely can't be the right way to do it.

In general, the doctor refers you to a consultant and the consultant will send you a letter with an appointment.

I suppose you could ring or email the consultant asking for one and if they kick up a fuss, get back to the doctor.

Gael23 · 23-07-2019 8:24am

Jellybaby1 wrote: »

A family member was told by their GP they need to see a consultant and when asked for a referral letter was told they have no hope of getting an appointment in the hospital and they have to go private which they can't afford. I intend paying for this on their behalf, however, they still can't get a referral letter because they were told by the GP they have to get the appointment with the consultant first, then they will get a referral letter. This surely can't be the right way to do it.

You will be waiting a year at a minimum for a public appointment with a dermatologist, quite possibly longer depending on where you are. You still need a referral letter to get an appointment, any GP should know that.

wonga77 · 23-07-2019 4:33pm

I think mine was in over 2 years before I was called

rizzee · 23-07-2019 4:43pm

Currently in the 35 degree Greek heat. Factor 50 and plenty of swimming in the sea. 2 days in, huge difference. Get out and get that Vitamin D into yous

eeloe · 23-07-2019 5:01pm

paying the 250 to be seen privately is the best money you'll ever spend.

makeorbrake · 23-07-2019 6:05pm

rizzee wrote: »

Currently in the 35 degree Greek heat. Factor 50 and plenty of swimming in the sea. 2 days in, huge difference. Get out and get that Vitamin D into yous

I think your mileage can vary. I spent last year travelling around sunnier climbs and my psoriasis disappeared. I put this down to the increased sun exposure. However, moved from wandering mode to regular life with work stresses (in the same sunny part of the world) and i'm back to square one. Now when i go out of my way to get some rays on my skin, it seems like it makes no difference.

But of course it's recognised as helping and in your case its working - so makes sense to avail of it. Just with the understanding that a positive result is not a foregone conclusion.

brevity · 23-07-2019 6:36pm

eeloe wrote: »

paying the 250 to be seen privately is the best money you'll ever spend.

Agreed. If you are serious about trying to get rid of it, it seems to be the only thing that works. At least for me.

I couldn’t go back to wrapping my legs in cling film so I wouldn’t tear lumps of my skin off and my bed sheets don’t look like something from a SAW movie.

I understand “alternative science” and or different diets may work (and I am thinking more about diet in light of the fact I might have to go on methotrexate) but for now the dermatologist route is the best for me.

Gael23 · 23-07-2019 6:51pm

rizzee wrote: »

Currently in the 35 degree Greek heat. Factor 50 and plenty of swimming in the sea. 2 days in, huge difference. Get out and get that Vitamin D into yous

eeloe wrote: »

paying the 250 to be seen privately is the best money you'll ever spend.

brevity wrote: »

Agreed. If you are serious about trying to get rid of it, it seems to be the only thing that works. At least for me.

Going private for the first appointment is the only option of you are really suffering. Then you can switch to the public system depending on your case, that what I done.

qo2cj1dsne8y4k · 25-07-2019 3:25pm

I’m having an awful time and need some advice.

On methotrexate for over a year, all going well, never skipped any treatments. Within a few weeks of starting it cleared up my skin and helped my joints so much. It’s making me a bit unwell the day after but the thoughts of taking the tablet, ten of them, makes me feel like heaving. I have actual goosebumps and feel sick even thinking about taking them.

My hair is coming out in clumps. It’s at the stage where I’m scared to brush it because I’m losing handfuls. I haven’t been getting my bloods done, I haven’t attended one appointment three months after starting meds so was discharged from the clinic.

I went to my gp yesterday telling her I want off it, she said she would reduce me from 25 to 20. Said she could see some plaques (only visible the past two weeks I’d say) and that she can see my hair is thinning and is reluctant to stop me on the meds because she’d rather see my bloods and wants me to see the rumathologist ASAP. She rang today to say she sent the letter so reckons I should be seen in the next week. I just can’t face taking another week of it.

This morning, I noticed two red marks on my hairline either side of my forehead, and my right arm is KILLING me so metho isn’t working and the symptoms are coming back fast.

I hope to be seen in the next week. Any advice? I don’t know where to go from here

Gael23 · 26-07-2019 12:12pm

Grace Thoughtless Mortal wrote: »

I’m having an awful time and need some advice.

On methotrexate for over a year, all going well, never skipped any treatments. Within a few weeks of starting it cleared up my skin and helped my joints so much. It’s making me a bit unwell the day after but the thoughts of taking the tablet, ten of them, makes me feel like heaving. I have actual goosebumps and feel sick even thinking about taking them.

My hair is coming out in clumps. It’s at the stage where I’m scared to brush it because I’m losing handfuls. I haven’t been getting my bloods done, I haven’t attended one appointment three months after starting meds so was discharged from the clinic.

I went to my gp yesterday telling her I want off it, she said she would reduce me from 25 to 20. Said she could see some plaques (only visible the past two weeks I’d say) and that she can see my hair is thinning and is reluctant to stop me on the meds because she’d rather see my bloods and wants me to see the rumathologist ASAP. She rang today to say she sent the letter so reckons I should be seen in the next week. I just can’t face taking another week of it.

This morning, I noticed two red marks on my hairline either side of my forehead, and my right arm is KILLING me so metho isn’t working and the symptoms are coming back fast.

I hope to be seen in the next week. Any advice? I don’t know where to go from here

Without coming across as unduly harsh, you need to take some more responsibility for your condition. Medication is great but we as patients need to do our bit also. Particularly with MTX you must have regular blood tests because it can affect your liver.

Is there any particular reason you have chosen not to attend clinic appointments or have blood tests. Healthcare is a two way street between you and your doctor so unless you attend appointments they cant continue to treat you.

My advice: I think your GP is correct, you should wait until the bloods come back at a minimum and really until you see the rheumatologist before you fully come off the MTX because then your symptoms will return with vengeance.

When you see the Rheumatologist you need to have a frank conversation about what led to the situation you are in and is there a way those issues can be put right going forward before you decide on a new regime. I personally wouldn't take MTX because it has awful side effects but YOU need to take responsibility for your health, there is only so much doctors can do for you

qo2cj1dsne8y4k · 26-07-2019 12:16pm

Gael23 wrote: »

Without coming across as unduly harsh, you need to take some more responsibility for your condition. Medication is great but we as patients need to do our bit also. Particularly with MTX you must have regular blood tests because it can affect your liver.

Is there any particular reason you have chosen not to attend clinic appointments or have blood tests. Healthcare is a two way street between you and your doctor so unless you attend appointments they cant continue to treat you.

My advice: I think your GP is correct, you should wait until the bloods come back at a minimum and really until you see the rheumatologist before you fully come off the MTX because then your symptoms will return with vengeance.

When you see the Rheumatologist you need to have a frank conversation about what led to the situation you are in and is there a way those issues can be put right going forward before you decide on a new regime. I personally wouldn't take MTX because it has awful side effects but YOU need to take responsibility for your health, there is only so much doctors can do for you

In the weeks after starting MTX I went through a huge personal crisis, and with my follow up app, it fell where I was so busy with work, dealing with the fall out of the previous 3 months and trying to get myself back on my feet.
Totally my fault, I’m just upset because it’s not working for me any longer and I feel so wretched taking it anyway. I can’t face the blood tests because I work so much so can only do certain days and the nurse in my dr surgery is so hard to book if you’re not very flexible and when she isn’t available I’ve to go to the hospital with blood forms and to be honest, I don’t even have time to sleep for a full night at the moment, I’m up to my eyes. And I’m awful for burying my head in the sand and ignoring my problems too.

Dubl07 · 30-07-2019 9:52pm

Grace Thoughtless Mortal wrote: »

In the weeks after starting MTX I went through a huge personal crisis, and with my follow up app, it fell where I was so busy with work, dealing with the fall out of the previous 3 months and trying to get myself back on my feet.
Totally my fault, I’m just upset because it’s not working for me any longer and I feel so wretched taking it anyway. I can’t face the blood tests because I work so much so can only do certain days and the nurse in my dr surgery is so hard to book if you’re not very flexible and when she isn’t available I’ve to go to the hospital with blood forms and to be honest, I don’t even have time to sleep for a full night at the moment, I’m up to my eyes. And I’m awful for burying my head in the sand and ignoring my problems too.

Gael23 was very frank, but a little too harsh. His honesty about mtx is to the point though. I personally refused to touch it with a bargepole. You have tried it, it hasnt worked, and now could be the time to draw the line and say "enough". I only began to clear when I started etanercept. Stress still gives me some degree of patches but they are nothing like my previous experiences.
An appointment with a really good dermatology consultant should be a priority. Best of luck and lots of sympathy. I've been there with fumaric acid esters and still have issues from them.

snowstreams · 07-08-2019 2:51pm

Has anyone here had much luck controlling their psoriasis or arthritis by diet?
I have psoriasis and also spondylitis but I've always noticed the correlation between digestion and any flare ups.
Stress affects my stomach too, so that can lead to flare ups too.

I went on a no carb, no bread diet once years ago and I managed to get rid of all symptoms but over the years i went back to normal food.
Im going to try a no bread, no dairy, & high fibre diet to improve my gut and hopefully control it.

wonga77 · 07-08-2019 3:00pm

snowstreams wrote: »

Has anyone here had much luck controlling their psoriasis or arthritis by diet?
I have psoriasis and also spondylitis but I've always noticed the correlation between digestion and any flare ups.
Stress affects my stomach too, so that can lead to flare ups too.

I went on a no carb, no bread diet once years ago and I managed to get rid of all symptoms but over the years i went back to normal food.
Im going to try a no bread, no dairy, & high fibre diet to improve my gut and hopefully control it.

yes and no, i went on a strict diet last year, i found it quite difficult il admit but stuck to it for close to 3 months. My health got worse and as a result my gf insisted I started eating regular foods again. The only p that got better was on my scalp, I would say I was close to 70% covered and it dissapeared completely. I also started using a shampoo that I got from the states at the same time so im not so sure what worked.
The only thing I kept out of my diet since then was bread, i just use spelt bread now. The family business is a grocery store and I used to eat rolls quite a lot, I cut them out and feel that it was a huge help.
I dont eat much dairy either
Its really hard to know, it obviously works for some but not for others.
I went to a specialist a few months back and she insisted that dieting had nothing to do with psoriasis while I know others swear it does

brevity · 07-08-2019 3:11pm

I cut out sugar for a while and it helped with the itching

khalessi · 07-08-2019 3:12pm

Anyone use TL1 light treatment hoping to get this for chronic psoriasis

snowstreams · 07-08-2019 3:15pm

wonga77 wrote: »

yes and no, i went on a strict diet last year, i found it quite difficult il admit but stuck to it for close to 3 months. My health got worse ...

oh how did your diet get worse?
I know that I am bordering on underweight as it is, so thats the only health affect that I think might deteriorate.
Hopefully cholesterol etc should go down too without dairy and by increasing fibre.

I've noticed when I eat a lot of sweets & bread etc, then i feel far more tired than normal and of course my arthritis & psoriasis flare up.
I even got some alopecia and vitiligo patches when i was in my 20s when I ate bread rolls and drank coke for regularly for lunches.

There is a gut microbiome connection for most forms of arthritis so I was assuming psoriasis would be included in that connection too.

wonga77 · 07-08-2019 4:00pm

snowstreams wrote: »

oh how did your diet get worse?
I know that I am bordering on underweight as it is, so thats the only health affect that I think might deteriorate.
Hopefully cholesterol etc should go down too without dairy and by increasing fibre.

I've noticed when I eat a lot of sweets & bread etc, then i feel far more tired than normal and of course my arthritis & psoriasis flare up.
I even got some alopecia and vitiligo patches when i was in my 20s when I ate bread rolls and drank coke for regularly for lunches.

There is a gut microbiome connection for most forms of arthritis so I was assuming psoriasis would be included in that connection too.

Got worse in the sense that I lost weight, weight I probably didnt need to lose as im not heavy. I think I just felt worse in general, didnt get the boost in energy I was expecting and as a result it affected my mood as I couldnt reach out and eat on the go as I was used to. It prrobably affected my mindset as I was at a few social events where I couldnt eat/drink as normal and it was frustrating.
Forgot to mention that I drink a fair bit as well and I gave that up without any noticable differences. Im back on that since :pac:

rubadub · 07-08-2019 7:57pm

khalessi wrote: »

Anyone use TL1 light treatment hoping to get this for chronic psoriasis

any links to this? never heard of it, however I know some of the Philips brand UVB bulbs have got TL in the model name so am guessing it might be that.

I have my own philips narrowband UVB bulb and it certainly worked, and has worked for many others here, but not all responded to UVB treatment. Many did get bad again but were clear for many months.

makeorbrake · 07-08-2019 8:55pm

rubadub wrote: »

any links to this? never heard of it, however I know some of the Philips brand UVB bulbs have got TL in the model name so am guessing it might be that.

I have my own philips narrowband UVB bulb and it certainly worked, and has worked for many others here, but not all responded to UVB treatment. Many did get bad again but were clear for many months.

I moved to sunnier climbs last year. With that my psoriasis disappeared. It's reappeared over the past six months and in seeking treatment here (overseas), light therapy was an option but they decided against due to the cancer risk given my irish skin.

Not even convinced that light was the whole deal either - as I wasn't working last year and didn't have a care in the world. Have been exposing those affected bits to sunlight in any event but doesn't seem to be making any difference. This year, whilst my job isn't stressful, it still comes with the usual workplace stresses sometimes. Makes me wonder if the issue is all psychological.

(but of course, everyones mileage will vary).

BohsCeltic · 08-08-2019 12:01am

Mine has flared up again. But in different places. Fecking pain in the hole. Some heal then just appear in different places.

Dubl07 · 08-08-2019 12:15pm

rubadub wrote: »

any links to this? never heard of it, however I know some of the Philips brand UVB bulbs have got TL in the model name so am guessing it might be that.

I have my own philips narrowband UVB bulb and it certainly worked, and has worked for many others here, but not all responded to UVB treatment. Many did get bad again but were clear for many months.

It's actually TL01 - narrowband UVB.

Yes, I've had it in the past but to work on my P it had to cause a mild to moderate burn and the side effects were not good. Every person's body is different though, and we have to jump through the hoops to be authorised to get access to the really effective stuff (biologics).

eeloe · 08-08-2019 12:35pm

The biologics really are the only thing to get mine under control.

Really did try everything over the years, exercise(hours and hours a week), elimination diets(while they did make it better they didn't actually completely clear it, i do think leaky gut is an issue here) creams, UV, everything.

The only thing that got me 100% clearance was biologics.

Always Tired · 08-08-2019 2:35pm

Mine has flared up awful bad, I've been stressed lately and also not eating great, but both of those stem from the fact I'm unemployed. Carbs are the cheapest most filling food. I am going to have to cut them out, though, I am in agony.

Have inverse psoriasis in my groin and the crack of my arse, also my scrotum, all of which is very painful. Plaques all over my back, legs, and arse, a few on top of my hands, my elbows.

Also the perioral dermatitis on my face is back with a vengeance, when I wake up I have a muzzle of flakes that I have to exfoliate and moisturize.

Between that and the baths with dead sea/epsom salts I am taking for the inverse p, and the application of creams I spend the guts of 3 hours per day treating this disease the last few weeks, with only mild improvement.

All my creams and bath stuff were run out and had to be replaced this week. I bought elave pure cream for my PD 7.80 euro which seems good, doesnt irritate but still doesnt cure it, as like P it seems incurable. I am on a long course of antibiotics for it. Bought a soap free bath oil specially formuated for P 12.00 euro, Aveeno 4.75, dead sea salts ×3 (5er for one bath) a big thing of epsom salts 17.50 and refilled my dovonex Rx 2.50

That's just under 60.00 euro. More than I would spend on food in a week. Almost a third of my weekly income.

The worst part is, under the current conditions I wouldnt even be fit for work even if I could get it. But psoriasis isn't classed as a disability, even though it is chronic, incurable and affects my movement, confidence, mental health, and energy level. I always thought I suffered from fatigue, my mother said I was just lazy, but recent studies have found that a very high percentage of P sufferers have low energy, they think it might be due to the immune system malfunctions associated with it.

I actually have a jobpath appointment later today which I find really stressful as on the one hand, they haven't referred me to a single job and I've been on it now 18 months (my 2nd stint). In between that I worked at a restaurant but had to leave due to my P (a customer complained about my elbows to a manager).

But on the other hand I can't see how I can work, and I really don't want to tell this stranger about how I have an inflamed sack, it's none of her business.

All I've been able to manage the last few weeks are to walk my dog and do a weekly shop, because I have to do that even if it hurts just to put clothes on, but other than that all I've been doing is sleeping or sitting on the couch. Even if I was healthy I have no money to do anything anyway after spending so much on psoriasis related stuff.

Sorry for the rant, but I've never felt so low. Doctors are useless. Was on the derm list 3 years, when they finally rang they said I would have to go to Dublin which is 4.5 hours on the bus each way and costs 32 euro. I had a derm appt 8 years ago in Sligo, I had to wait an hour and a half past my appt time each time (it seemed they assume someone young should be seen last), then was made to strip off and sit in the exam room waiting for the doc while this old biddy of a nurse sat across from my staring me up and down (seemed she was very interested in my tattoos). Then at the end of it I was prescribed the same fcuking steroid creams as I was from my GP.

I'm at my wits end.

BohsCeltic · 08-08-2019 2:56pm

Always Tired wrote: »

Mine has flared up awful bad, I've been stressed lately and also not eating great, but both of those stem from the fact I'm unemployed. Carbs are the cheapest most filling food. I am going to have to cut them out, though, I am in agony.

Have inverse psoriasis in my groin and the crack of my arse, also my scrotum, all of which is very painful. Plaques all over my back, legs, and arse, a few on top of my hands, my elbows.

Also the perioral dermatitis on my face is back with a vengeance, when I wake up I have a muzzle of flakes that I have to exfoliate and moisturize.

Between that and the baths with dead sea/epsom salts I am taking for the inverse p, and the application of creams I spend the guts of 3 hours per day treating this disease the last few weeks, with only mild improvement.

All my creams and bath stuff were run out and had to be replaced this week. I bought elave pure cream for my PD 7.80 euro which seems good, doesnt irritate but still doesnt cure it, as like P it seems incurable. I am on a long course of antibiotics for it. Bought a soap free bath oil specially formuated for P 12.00 euro, Aveeno 4.75, dead sea salts ×3 (5er for one bath) a big thing of epsom salts 17.50 and refilled my dovonex Rx 2.50

That's just under 60.00 euro. More than I would spend on food in a week. Almost a third of my weekly income.

The worst part is, under the current conditions I wouldnt even be fit for work even if I could get it. But psoriasis isn't classed as a disability, even though it is chronic, incurable and affects my movement, confidence, mental health, and energy level. I always thought I suffered from fatigue, my mother said I was just lazy, but recent studies have found that a very high percentage of P sufferers have low energy, they think it might be due to the immune system malfunctions associated with it.

I actually have a jobpath appointment later today which I find really stressful as on the one hand, they haven't referred me to a single job and I've been on it now 18 months (my 2nd stint). In between that I worked at a restaurant but had to leave due to my P (a customer complained about my elbows to a manager).

But on the other hand I can't see how I can work, and I really don't want to tell this stranger about how I have an inflamed sack, it's none of her business.

All I've been able to manage the last few weeks are to walk my dog and do a weekly shop, because I have to do that even if it hurts just to put clothes on, but other than that all I've been doing is sleeping or sitting on the couch. Even if I was healthy I have no money to do anything anyway after spending so much on psoriasis related stuff.

Sorry for the rant, but I've never felt so low. Doctors are useless. Was on the derm list 3 years, when they finally rang they said I would have to go to Dublin which is 4.5 hours on the bus each way and costs 32 euro. I had a derm appt 8 years ago in Sligo, I had to wait an hour and a half past my appt time each time (it seemed they assume someone young should be seen last), then was made to strip off and sit in the exam room waiting for the doc while this old biddy of a nurse sat across from my staring me up and down (seemed she was very interested in my tattoos). Then at the end of it I was prescribed the same fcuking steroid creams as I was from my GP.

I'm at my wits end.

Sorry to hear this.

Mine has gone from my face and i can control it now, my arms are ok but my legs are bad and now i have it on my palms and arse too.

Just seems like one place clears then it pops up somewhere else.

I already suffer with depression so this doesn't help.

It's sunny outside now but i just don't have the energy to go out.

Psoriasis

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