Psoriasis

eeloe

Was up with my dermatologist yesterday.

I'm having some flare ups, on my legs, elbows and some small patches on my elbows, probably about 3-5% of what i had before.

He's moved my stelara shots from 12 weeks to 8 weeks apart, once i'm fully clear again i'm moving the shots 10 weeks apart.

makeorbrake

So after 3 months of it being on hold because of Covid, it looks like I will finally be starting Guselkumab in the coming days. They tell me that although it does weaken the immune system, they have not had any issues with regard to it and covid 19.

What's been happening with any of you back in Ireland that were taking (or were due to take) these immune system suppressing psoriasis drugs? Are you being told that covid doesn't represent any risk in this case?

brevity

I'm on Guselkumab/Tremfya but only had two injections. I've seen no improvement in either my psoriasis or psoriatic arthritis but it's early days yet I suppose.

I'm just being careful and I am in the lucky position of being able to work form home.

Been waiting since December but finally seeing a rheumatologist on Friday. No idea if it's psoriatic arthritis or not but my infliximab infusions do seem to temporarily remove the pain.

eeloe

makeorbrake wrote: »

So after 3 months of it being on hold because of Covid, it looks like I will finally be starting Guselkumab in the coming days. They tell me that although it does weaken the immune system, they have not had any issues with regard to it and covid 19.

What's been happening with any of you back in Ireland that were taking (or were due to take) these immune system suppressing psoriasis drugs? Are you being told that covid doesn't represent any risk in this case?

Been taking Stelara the whole way through, and have had zero issues. took it in March and May, and now due to take another shot this weekend.

I honestly don't think it does weaken your immune system that much, if you stay generally healthy and live a good lifestyle you should have minimal issues.

echo beach

CastorTroy wrote: »

Hi. First time posting here.
I'll admit I'm not great at treating my psoriasis but thankfully I don't have it as bad as some.
I have big patches on both my upper legs and number of patches on my torso and arms.
When I do decide to treat it I use Dovobet but for some reason they've decided to stop doing that here. Anyone know why?
Since I live near the border, I started getting it in the North but today I was told the smaller tubes have been discontinued and the larger tube doubled in price, so looks like that won't be an option in the future either.

Dovobet is still available as a gel but pricy. Reason given for withdrawing the ointment form was that gel is less messy to use. Most people prefer the Enstillar foam but it is even more expensive. You can’t win, especially when you have to pay 23% VAT.

makeorbrake

brevity wrote: »

I'm on Guselkumab/Tremfya but only had two injections. I've seen no improvement in either my psoriasis or psoriatic arthritis but it's early days yet I suppose.

Any results yet?

My access to it got pushed back some more...until today when I finally got the first injection. My Psoriasis is getting much worse so it would really be a tonic to get some results.

To others that have/are taking it - how long did you take it until you saw some results?

brevity

makeorbrake wrote: »

Any results yet?

My access to it got pushed back some more...until today when I finally got the first injection. My Psoriasis is getting much worse so it would really be a tonic to get some results.

To others that have/are taking it - how long did you take it until you saw some results?

I have had 3 (week 0, week 4, week 8) injections and it's only now that it seems to be getting better but its still noticeable on my legs.


It takes up to 16 weeks for it to take hold. It is frustrating waiting for it to start working.


I'm also making a few dietary changes, reducing sugar and bread. I got some vitamins (curcumin and d3, omega 3 and glucosamine hcl) yesterday to help with my joints.

Gael23

makeorbrake wrote: »

Any results yet?

My access to it got pushed back some more...until today when I finally got the first injection. My Psoriasis is getting much worse so it would really be a tonic to get some results.

To others that have/are taking it - how long did you take it until you saw some results?

Biologics can take a few months to show results so hang in there.

Dubl07

brevity wrote: »

I have had 3 (week 0, week 4, week 8) injections and it's only now that it seems to be getting better but its still noticeable on my legs.


It takes up to 16 weeks for it to take hold. It is frustrating waiting for it to start working.


I'm also making a few dietary changes, reducing sugar and bread. I got some vitamins (curcumin and d3, omega 3 and glucosamine hcl) yesterday to help with my joints.

Wheat seems to irritate me as well, but rye is okay. Sugar is fine, but artificial sweeteners seem to be incredibly inflammatory.

Curcumin is only one of many components of turmeric; there's no money in doing the proper research on all the other aspects so it's just not really available. You'd be better off making golden paste. You need the black pepper and oil to make the turmeric properly bioavailable.

And if you're taking D3, K2 is a complementary vitamin.

rizzee

I'm incredibly lucky the last few months with maintaining 95% of the psoriasis gone. Few factors for me:

- Cutting out meat completely from diet

- Currently running 5 days a week (sweat/salt could be good for it?)

-The odd dip in the sea.

- Using silcocks base as my shower gel and shaving cream.

- drinking pints of water when on the beer, staying hydrated

- daily multi vitamins, omega 3 and sulforophane tablets.

Once a week, if even, I'd dab over the odd dot of psoriasis with my dovobet ointment.

I will say that my nails aren't great, about 6 or 7 of them weird shapes and yellow in parts so I just try to keep them as short as possible. It might go away for a few weeks but it tends to come back. Trying to figure out the trigger for this.

Have also gotten tattoos and they have healed well so far, touch wood.

Get out in that sunlight while it's there folks. Best of luck and stay safe!

senordingdong

Does anybody have experience in dealing with nail psoriasis and/or psoriatic arthritis?

I've never been stricken with skin/plaque psoriasis but have always had it in my nails. Consultant dermatologist I saw said it wasn't worth prescribing harsh methotrexate etc and put me at ease about how it's only a mild cosmetic issue.
But recently some digits are becoming very painful and at times unusable.

khalessi

I have nail psoriasis but it has so far not been painful apart from when nail lifts from nailbed. I used take zinc and other vitamins to strenthen my nails alog with evening primrose oil.

Re psoriac arthritis, I had dactylitis or sausage toe and I walked around or limped to be more correct, for a number of months, i thought i broke the toe before getting a diagnosis and a steroid injection to the joint sorted the excruciating pain. The injection itself was quick and painless and toe doesn't bother me but it still looks like a sausage.

makeorbrake

Nail psoriasis I've had for a long time. Psoriatic arthritis luckily I've never had.

I think if its just on the nails, be thankful (!!). It's worth putting up with -without taking any of those drugs. All drugs have down-sides. Just in case it's a precursor to plaque psoriasis, etc. maybe use the time to experiment with diet, etc. - to try and resolve it.

senordingdong

khalessi wrote: »

I have nail psoriasis but it has so far not been painful apart from when nail lifts from nailbed. I used take zinc and other vitamins to strenthen my nails alog with evening primrose oil.

Re psoriac arthritis, I had dactylitis or sausage toe.

Mine wasn't but there have been huge developments in the past two years.
Some nails resembled psoriatic nails and some resembled Onychomycosis and the doctor ruled out the presence of fungus. Lately i had been treating my toenails by grinding them and lathering cbd balm onto them but was skeptical of topical treatments.

makeorbrake wrote:

All drugs have down-sides. Just in case it's a precursor to plaque psoriasis, etc. maybe use the time to experiment with diet, etc.

I've ordered Paganos book as per Rubadubs post.
I want to believe that the remedy is in my hands, and I will take your advice.
Thanks

khalessi

senordingdong wrote: »

Mine wasn't but there have been huge developments in the past two years.
Some nails resembled psoriatic nails and some resembled Onychomycosis and the doctor ruled out the presence of fungus. Lately i had been treating my toenails by grinding them and lathering cbd balm onto them but was skeptical of topical treatments.

Consultant looked at my fingernails and said worst case they had ever seen without other symptoms at the time it first appeared about 30 yrs ago, took a photo for lectures and welcomed me to the club and told me to come back if any other symptoms appeared, that took a couple of years. Have had it on and off ever since, it comes and goes sometimes like lots of dimples other times nails painful as lifting and can be sensitive to lift things or if they hit off anything when they have lifted.

senordingdong

"khalessi wrote: »

it comes and goes sometimes like lots of dimples other times nails painful as lifting and can be sensitive to lift things or if they hit off anything when they have lifted.

There's so much variation, none of mine are sore to the touch but for example, one of the thumbs has a very bad nail and some days I can't use that thumb to lift or apply pressure like in a cylindrical lock in a toilet cubicle.
And other nails I have no problem with the joints but the nails are growing in such a way that they are cutting into my skin.

khalessi

senordingdong wrote: »

There's so much variation, none of mine are sore to the touch but for example, one of the thumbs has a very bad nail and some days I can't use that thumb to lift or apply pressure like in a cylindrical lock in a toilet cubicle.
And other nails I have no problem with the joints but the nails are growing in such a way that they are cutting into my skin.

In the area of TMI, I am considering having toenails removed as they just do not grow right anymore and are difficult to deal with and sometimes painful when wearing shoes or walking. I am not sure whether to go ahaead with this so if anyone has had it done, adivce and experience would be welcome re pain, mobility etc.

senordingdong

khalessi wrote: »

In the area of TMI, I am considering having toenails removed .

I asked the dermo about this and he said there was no guarantee they wouldn't just grow back the same way.

BohsCeltic

My whole body is good with the exception of my feet. My feet sweat much so maybe that is drying them out, then they get itchy and i scratch. Then they are so painfull.
My shower has a bath so i usually shower but put the plug in so the water can cover my feet.

I wear trainers all the time, even in my home as they cushion my feet a bit but obviously my feet need air. I ordered some sliders to let my feet breath when i am at home to see if it helps.

I think it's just trial and error really.

rubadub

senordingdong wrote: »

I've ordered Paganos book as per Rubadubs post.

lots consider him a quack, I would find the diet requirements very difficult to follow.

I was saying I have had massive improvements but was doing a combination of lots of stuff, the one totally new thing was eating homemade sauerkraut (fermented cabbage), another poster said they had big improvements after eating fermented veg. It is a very easy, cheap thing to try out. The commercial stuff is usually heat treated so will not have the probiotic effect which is what I was after. I thought I would be forcing it down but really like it!

I have an easy way to make it which does not need fancy jars or equipment that many guides will say you need. I just put it in plastic bottles with wide necks, none have ever gone bad on me. If you want to try it I will give more details.

senordingdong wrote: »

I asked the dermo about this and he said there was no guarantee they wouldn't just grow back the same way.

I saw a youtube video of toenails being removed permanently, they treated them with acid to kill off the "root" or whatever the term was for where it grows again. They also said it might still grow back if not every scrap was treated.

My nails are now perfect, 6-7months ago I was hiding them. In the past I had treated them with dovonex & UVB light

senordingdong

Sorry rubadub, I mixed you up with the other poster that was praising the book. I understand that it's more of a guideline but simply put, cutting out junk etc is obviously going to have health benefits.

The probiotic effect from fermented veg, would other probiotic have the same effect? Like a probiotic yoghurt?

Also, I was under the illusion that UV couldn't penetrate the nail?

wonga77

Never diagnosed with psoriasis in the nails but they are pretty bad. I keep them trim , file them down as much as i can and soak in vinegar for a while when I'm watching tv or youtube. The reason i use vinegar is because its cheap and i read an article before that said the a few minutes soaked in vinegar was far better than the expensive nail treatments out there. It wasn't anywhere scientific but I'm having very good results with it and intend on keeping it up

senordingdong

wonga77 wrote: »

Never diagnosed with psoriasis in the nails but they are pretty bad. I keep them trim , file them down as much as i can and soak in vinegar for a while when I'm watching tv or youtube. The reason i use vinegar is because its cheap and i read an article before that said the a few minutes soaked in vinegar was far better than the expensive nail treatments out there. It wasn't anywhere scientific but I'm having very good results with it and intend on keeping it up

Just regular over the counter white vinegar?

khalessi

senordingdong wrote: »

Just regular over the counter white vinegar?

Does it change the colour of your nails?

brevity

It could be apple cider vinegar...

wonga77

Nope just regular malt vinegar, got a 5L bottle for a few quid through work. I had tried various expensive nail fungal stuff and nothing was working. The article i read made a good point about that stuff only being on your fingernails for moments before drying up/washed off or whatever. Vinegar is quite acidic so soaking your nails in it, if even for only 10 minutes seems more beneficial. No discolouration either.
Like I said, there's no proven science behind it, just that I've tried everything and this seemed a cheap variation. A bit like the psoriasis on my body, I've tried most things really over the last 20 years and very little works.
Always open to new things

senordingdong

wonga77 wrote: »

I had tried various expensive nail fungal stuff and nothing was working

Mine were misdiagnosed as nail fungus for years. So much money wasted on topical treatments that were all for nothing.

khalessi

wonga77 wrote: »

Nope just regular malt vinegar, got a 5L bottle for a few quid through work. I had tried various expensive nail fungal stuff and nothing was working. The article i read made a good point about that stuff only being on your fingernails for moments before drying up/washed off or whatever. Vinegar is quite acidic so soaking your nails in it, if even for only 10 minutes seems more beneficial. No discolouration either.
Like I said, there's no proven science behind it, just that I've tried everything and this seemed a cheap variation. A bit like the psoriasis on my body, I've tried most things really over the last 20 years and very little works.
Always open to new things

I have always said having psoriasis is like in the 1800s when the quack would come along and sell you petrol or some suchwith medicinal benefits, we will take anything nearly to get rid of it.

I found acupuncture good, tried homeopathy nothing an dlike yourself am open to anything

makeorbrake

khalessi wrote: »

I have always said having psoriasis is like in the 1800s when the quack would come along and sell you petrol or some suchwith medicinal benefits, we will take anything nearly to get rid of it.

Yes...because despite the amazing tech that's knocking around these days, they have no earthly idea how to unravel the psoriasis enigma.