Psoriasis

khalessi

brevity wrote: »

Nope.

Daft when you think that some people are on long term meds and methotrexate

brevity

khalessi wrote: »

Daft when you think that some people are on long term meds and methotrexate

Absolutely. I spent 500€ last month on consultants and medication. Admittedly some of it was my negligence around DPS dates but it’s seriously demoralising.

BohsCeltic

brevity wrote: »

To me there sounds like a number of different issues here.

- Mental health and self care.
- Your skin, joints and pain management

Is there anyway you can get to a GP? Write down a list of questions before going in. Don’t leave until you feel a bit better or that there is a proper plan in place. Ask to be referred to a dermatologist.

Once this is done you need to start a routine and a bit of a shopping list. Epsom salts, antihistamines and paracetamol or neurofen. Try and soak in a bath twice a week. Start a food diary. Try and cut out processed foods, sugar and alcohol. Download the Oak app and try and meditate. Fresh fruit and veg.

You don’t have do all of these things at once but it’s a plan.

I’ve been there and it’s a horrible place. PM me if you need to chat

Thank you. I asked my mother to buy some salts for me from my pharmacy, she's 75 and recovering from a stroke. That's how bad i was. But the chemist felt the pain i was in when my mother told her but said i need to go back to my gp as open wounds can be much more painfull using salts.

Kind of makes sense because i always remember eating a pack of salt and vinegar crisps with a cut finger lol.

I do have a lot of lifestyle changes to make which will hopefully help me. But battling this and depression is taking it's toll on me. And not only me, it's affecting my family too.

But just have to soldier on.

rubadub

https://newatlas.com/health-wellbeing/uvb-sunlight-skin-gut-microbiome-vitamin-d-autoimmune/

makeorbrake

rubadub wrote: »

https://newatlas.com/health-wellbeing/uvb-sunlight-skin-gut-microbiome-vitamin-d-autoimmune/

Was reading about that very same research yesterday and wondered what implications it has for psoriasis....


I'm 5 weeks on acitretin and no improvement. Perhaps thats still too early to determine if it has any effect but it doesn't sound promising. Probably will have to move on to another drug.


I had been back in Ireland for a month and said that I felt the water there had really affected the condition. I've been back overseas here a couple of weeks now and whilst I have the same problem the whole time, it's no longer gone ballistic as it had done in Ireland. I think for any of you in areas with hard/alkaline water, you should bear that in mind.

khalessi

Good to know about the water. Im in a hard water area.

Just wondering any of ye who had the light treatment. How many times did ye have it?

Gael23

khalessi wrote: »

Good to know about the water. Im in a hard water area.

Just wondering any of ye who had the light treatment. How many times did ye have it?

I had 40 sessions. It didn’t work for me but some people get great relief from it

rubadub

makeorbrake wrote: »

Was reading about that very same research yesterday and wondered what implications it has for psoriasis.....

some here reported good results from eating fermented foods, like sauerkraut etc. I had never heard of any link between UVB and gut microbiome before.

To me it sounds like you might get good results combining the UVB therapy with a diet change, really hit it hard.

Mountainsandh

Hi all, I haven't been around here for a while, but I'm back with a question. I have been on methotrexate for... I can't remember, should check my post here but I would guess about 2 years now.
It's been brilliant for the psoriatic arthritis and has taken most of the skin p away too, not all, still have some on arms and a slight bit on hands.

Anyway, I'm at a stage now where it seems to wear off, I've read that methotrexate can become a lot less effective for 70% of people after 2 years, so that seems spot on... I have stiffness coming back, fatigue, joint pain, and some more targeted flares here and there.

So I was at the rheumatologist today and he's going to try me on Xeljanz. That's a fairly new medication and I think he said there's been a first big batch of testing, but the second batch for is current so there could be side effects that are not yet well known, although the list is already long.

Anybody know and/or has tried Xeljanz ?

I will be staying on methotrexate in addition to the new meds at first, and then if all goes well, we'll phase out the mtx.

Between Areva and that he recommended that for me, as my hair has thinned somewhat already on the mtx and I'm due to get a coil which also thins hair (hormones), so I didn't want a third med thinning hair !

Any feedback on this would be great, thanks.

Mountainsandh

BohsCeltic wrote: »

But just have to soldier on.

I'm not sure I've read all your posts here, but I've read back a little, and they remind me of me a few years ago.

Just to say, I know you're waiting to see a specialist for the skin, but also please bear in mind psoriatic arthritis. You have mentioned joints and fatigue, and depression.
I had all of the above along with the skin too, depression a bit less maybe but yeah, anxiety issues and very tough mental health times with the constant pain inside and outside.

Getting treated for the arthritis has improved my life drastically, including my mood.

You simply cannot be well in your head when you go to bed in pain and wake up the same.

My GP was not "aware" of psoriatic arthritis, he probably "knew" about it, but just didn't even bring it up for consideration, I was the one who did (even though he had a record of all my joint ailments over the years).

I was like you and didn't spend much time on creams and ointments. It took ages to cover the % of body it was on, and most days there wasn't a hope I was going to do that twice or more a day. I did use oilatum baths when it was really bad all over, and that helped well.

I did very much attempt to mitigate the hands with ... any cream/ointment you can think of, medicated and not.
In winter with the cold and heating on inside it can be torture on the hands, so maybe try and aim for just that, the hands and forearms, so at least that's two areas on either side that might feel a bit better ?

What worked the best for me was an extremely pure argan solidified oil before it came into fashion : I was getting it directly from Morrocco, and it was so pure you had a powdery residue at the bottom and it stank (it was dark brown). It's discontinued I think because it probably didn't pass cosmetic export tests and such since, but if you find very pure argan extract it's worth a try.

Also, Johnson's baby oil is cheap and if you have cuts all over fragile hand skin, it's way easier and more gentle to apply than anything else.

I hope you get better soon, and that you get the appointments.

BohsCeltic

Mountainsandh wrote: »

I'm not sure I've read all your posts here, but I've read back a little, and they remind me of me a few years ago.

Just to say, I know you're waiting to see a specialist for the skin, but also please bear in mind psoriatic arthritis. You have mentioned joints and fatigue, and depression.
I had all of the above along with the skin too, depression a bit less maybe but yeah, anxiety issues and very tough mental health times with the constant pain inside and outside.

Getting treated for the arthritis has improved my life drastically, including my mood.

You simply cannot be well in your head when you go to bed in pain and wake up the same.

My GP was not "aware" of psoriatic arthritis, he probably "knew" about it, but just didn't even bring it up for consideration, I was the one who did (even though he had a record of all my joint ailments over the years).

I was like you and didn't spend much time on creams and ointments. It took ages to cover the % of body it was on, and most days there wasn't a hope I was going to do that twice or more a day. I did use oilatum baths when it was really bad all over, and that helped well.

I did very much attempt to mitigate the hands with ... any cream/ointment you can think of, medicated and not.
In winter with the cold and heating on inside it can be torture on the hands, so maybe try and aim for just that, the hands and forearms, so at least that's two areas on either side that might feel a bit better ?

What worked the best for me was an extremely pure argan solidified oil before it came into fashion : I was getting it directly from Morrocco, and it was so pure you had a powdery residue at the bottom and it stank (it was dark brown). It's discontinued I think because it probably didn't pass cosmetic export tests and such since, but if you find very pure argan extract it's worth a try.

Also, Johnson's baby oil is cheap and if you have cuts all over fragile hand skin, it's way easier and more gentle to apply than anything else.

I hope you get better soon, and that you get the appointments.

Thank you.
The pain is not like a sore knee or foot, its just a burning pain because my skin is cracking so awkward to move.
Also because of my depression and sleeping too much i think i might have bed sores.
I put the fatigue down to not having energy because i am not eating enough. My GP agreed with that too.

I am going to start putting my creams back on and will make appointment with GP again.
I am also going to move to another room and sleep on another bed to see if that helps.

The thoughts of having a shower in the morning are worrying me already. As mentioned by another poster about the water, I live in an area with hard water. Both my Mother and Brother( they don't have psoriasis) have also said about getting itchy much so maybe that isn't helping either.

Would love to take my dogs for a walk but cannot. So obviously without getting outside for fresh air and excercise is not helping my depression which is not helping my mind.

But i have hope.

BohsCeltic

https://www.breakingnews.ie/ireland/psychologist-warns-people-with-psoriasis-can-also-experience-anxiety-depression-and-feelings-of-isolation-962226.html?fbclid=IwAR2dWj-EWTpOY-5DoT7gUnoyenvus3M13-yX0IPy8m-4FLk5HQbGOVAVuS8

So this Physiologist can see what impact it has on peoples lives but insurance company Doctor's cannot see.

Ceepo

Hope people don't mind me intruding, I don't have Psoriasis.
Also I haven't read the whole thread, jumped in on a few pages here and there and see a few comment that some people have had Light treatment.
Curious to know what type of light was used during the treatment.

khalessi

UVB light treatment

BohsCeltic

Does anyone use gloves for sleeping ? I have it bad on my hands now too so i'm afraid if i put creams on i might inadvertently touch my eyes when sleeping, my knuckles are cracked so was going to use some large plasters then a cotton glove.

Ceepo

khalessi wrote: »

UVB light treatment

Thanks.

Just UVB?
Is that a full body treatment or just specific areas?.

khalessi

Can be specific area but for me full body treatment

Gremlinertia

BohsCeltic wrote: »

Does anyone use gloves for sleeping ? I have it bad on my hands now too so i'm afraid if i put creams on i might inadvertently touch my eyes when sleeping, my knuckles are cracked so was going to use some large plasters then a cotton glove.

I did use gloves for eczema some time back, great job, white cotton, bit of plaster to tape them on because i'd manage to get them off otherwise, generally available in pharmacies

Ceepo

khalessi wrote: »

Can be specific area but for me full body treatment

Do you have red light panel's yourself

khalessi

Nope I go for treatment in a hospital and light is white

Ceepo

I'll leave these links here for people to read and listen to,
It's no surprise regarding uv light and gut microbiome article.
DR Jack Kruse has been talking about the subject sunlight and its impact for a good few years now.

Note is is a heavy enough read!!
jackkruse.com/time-8-psoriasis-and-the-photoelectric-effect/

drannacabeca.com/search?type=article&q=jack+kruse

There are loads more podcast and article from DR Jack Kruse but these should get you going, and may indeed help to have a different and hopefully better understanding of autoimmune conditions.

Also note you can get your own red light panel or light bulb's.

LoughNeagh2017

I have a bad case of scalp psoriasis nowadays, it runs in my mothers family to an extent but mine only started when I started living unhealthy, ever since I went over the 16 stone mark I got it on my forehead, ears and on sides of nose, now at 18 stone my scalp is covered and it is thinning my hair probably because of the picking. I am on a diet at the moment so I will see if it improves over the next year. I also have it on my scrotum, it comes and goes there ever since I was 14 stone so I don't think that is weight related, I think I will get arrested one day for getting caught with my hand down my trousers in my car scratching in agony.

Psoriasis in my family dates back to at least the 1920s as my mother said her grandfather had it, it is quite interesting to know that as it gives you something in common with your forefathers who were dead before you were born.

Ronney

Anyone know of somewhere in Dublin that does the UVB light treatment at hours outside of the normal working day? Early mornings or 5/5.30pm +?

khalessi

Ronney wrote: »

Anyone know of somewhere in Dublin that does the UVB light treatment at hours outside of the normal working day? Early mornings or 5/5.30pm +?

James's Hospital I think they start at 745 or 8am

BohsCeltic

Oh the itching is driving me crazy, literally got about 2 hours of broken sleep last night. I found some Piroton in my press but not sure if i should take it as i never have before, my Mother takes it and it makes her really drowsy, anyone have any experience with it ? And parts of my body that have cracked skin like elbows and knuckes always seem to hit off things and the pain, aaaahhh.

khalessi

BohsCeltic wrote: »

Oh the itching is driving me crazy, literally got about 2 hours of broken sleep last night. I found some Piroton in my press but not sure if i should take it as i never have before, my Mother takes it and it makes her really drowsy, anyone have any experience with it ? And parts of my body that have cracked skin like elbows and knuckes always seem to hit off things and the pain, aaaahhh.

Bohs take it if you've no allergies to it and dont have to drive anywhere, and have you tried double emollient cream ive found it good

Knine

I'm also being driven mad with it at the moment & it can be extremely sore. Piriton is best taken at night. It leaves me like a zombie if I take it during the day.

Gael23

Knine wrote: »

I'm also being driven mad with it at the moment & it can be extremely sore. Piriton is best taken at night. It leaves me like a zombie if I take it during the day.

Piriton will work but you have to take it at night. You can get ones that don’t knock you out

BohsCeltic

Seemed to work for me. Took it at 9pm, went to bed at midnight and slept until 6am. Now i am not sure if it's because of that or because of the lack of sleep catching up on me.
Had a slight headache but could be unrelated but i'd take that over itching any day.

brevity

Yea the antihistamines do work. I think you can get creams too but I found them not as effective. I think they work with hives.

The psoriasis itch is like no other.