Psoriasis

Fionn · 03-06-2020 3:11pm

The recent sun has been beneficial, I'm tanned and the psoriasis has abated somewhat, I'm taking L-Glutamine and Vitamin D on a daily basis, which might be contributing.

brevity · 03-06-2020 3:28pm

The sun does help but i think it only really works if you have been in the sea too.

Gael23 · 03-06-2020 4:11pm

The sun absolutely does help but it is a temporary effect. The sea increases the benefit but salt water makes Psoriasis sting like crazy

09-06-2020 7:55pm

So I'm waiting to see a consultant in rheumatology atm. I've got a preexisting condition but looking increasingly likely that I've got a form of arthritis. Rheumatoid factor already tested negative. Basically possibilities seem to be psoriatic arthritis or lupus(my ANA was high). Have an existing treatment or other condition that seems to treat the joint pain for a short period.

I'm being driven slightly mad by it tbh. Joints around hands and knees are driving me completely insane, it's draining me of most of my energy.

Anyway, I'm sorry for butting into this thread even though I'm not diagnosed with anything as of yet.

qo2cj1dsne8y4k · 09-06-2020 9:21pm

Pull up a chair, we’re all in the same boat. Don’t worry too much about the RF being negative, mines tested negative for years. My ESR rates doubling CRAZY in a week along with swelling in my body is what got me diagnosed, so hopefully your consultant will sort you out. Are you going public or private? I don’t have health insurance but mine hit me so fast and so severe I couldn’t wait for my dr to refer me, so I went private and dr referred me anyway so I could transfer from private clinic to public. I was 23 months waiting for a public appointment. When it did arrive I am happy enough to stay private, if I get a flare I know the consultant will see me in a day or two. Honestly; if you can afford to go private and it is bad enough, I’d recommend you do that.

09-06-2020 9:26pm

Going private, covid tended to mess up getting appointments etc. So hopefully hear back from consultant soon. Finding it a bit upsetting physically struggling so much. Was a big runner and now going up and downstairs is intimidating.

mighty magpie · 09-06-2020 9:36pm

mighty magpie wrote: »

anyone have any improvements from trying to heal "leaky gut"

Something i have never tried to look at specifically outside of improving my diet (less junk food, alcohol etc).

Went to see a kinesiologist yesterday and their suggestion is to load up on L-glutamine and zinc then take some pro biotics after 4 weeks. I then found this video online.

https://www.youtube.com/watch?v=DsJwB3bTzp8

Update on this a few months on.

I seen no improvements with the l-glutamine, zinc and vitamin D tablets. Used them for about 8-10 weeks.

I never bought the pro biotics suggested but i did start drinking yakult and apple cider vinegar daily during lockdown and i have kept this up. The improvement has been brilliant. My back has completly cleared, 1 inch spots on torso are improving, patches on elbows are down 70%, patches on shins are still red but less flaking, scalp and eyelids well improved. I used no creams during this time other than aveeno moisturiser.

The kicker for me is that i don't know which of the following has helped me.

1. initial supplements have fixed me slightly even though I'm not taking them any more

2. Yakult and apple cider vinegar are helping any gut problems i may/may not have had

3. The SUN is out more now and I'm back out golfing multiple times per week.

My weight actually increased during lockdown and i always thought weight gain made my psoriasis worse. I'm going to pin the improvements on the weather which is disappointing as it means my psoriasis is cyclical and I'll suffer each autumn/winter with improvements in april/may each year.

Is anyone's story similiar to mine?

wonga77 · 09-06-2020 9:41pm

Are you mixing the yakult and apple cider vinegar or how are you taking it?

mighty magpie · 09-06-2020 11:05pm

wonga77 wrote: »

Are you mixing the yakult and apple cider vinegar or how are you taking it?

Sorry should have made that clearer. I take them seperately. Yakult midday and ACV just before bed.

Disclaimer - i haven't been advised or read anything that told me to take them at these times. It's just random but works for me.

Gael23 · 09-06-2020 11:09pm

Deleted User wrote: »

Going private, covid tended to mess up getting appointments etc. So hopefully hear back from consultant soon. Finding it a bit upsetting physically struggling so much. Was a big runner and now going up and downstairs is intimidating.

I waited for a year on the public list but it just got out of control and there was nothing else my GP could do without the involvement of a consultant. I have insurance which covered half the cost but I would have paid it anyway. I had 2 visits private then I went into the public system where I am still 5 years later

Newbie20 · 09-06-2020 11:52pm

I’m sorry if I’m repeating anything said already here because I am new to this forum. For years my psoriasis would get bad in the winter and clear in the summer. Gradually the sun started having less and less of an affect on it, eventually the sun actually seemed to make it worse which was depressing when it had always been my saviour.

Anyway I decided to go for phototherapy sessions, I didn’t think it would work but I felt that it was worth a go because nothing else was working for me at this stage and I was feeling fed up. In January 2018 I started going for 3 sessions a week, for 6/7 weeks. Best thing I ever did. It stayed away for about a year and a half and even now, 2.5 years later, it is back on my elbows and one or two small patches on my back and feet but overall I’m still very very clear. I would highly recommend it. Now it was expensive, probably cost me about €1,000 in total. But in my mind it was completely worth it. I’d definitely do it again in the next couple of years and would recommend it to anyone. I can’t guarantee it will work for you but I was at a stage where I thought nothing would work for me and it did.

khalessi · 10-06-2020 12:51am

Newbie20 wrote: »

I’m sorry if I’m repeating anything said already here because I am new to this forum. For years my psoriasis would get bad in the winter and clear in the summer. Gradually the sun started having less and less of an affect on it, eventually the sun actually seemed to make it worse which was depressing when it had always been my saviour.

Anyway I decided to go for phototherapy sessions, I didn’t think it would work but I felt that it was worth a go because nothing else was working for me at this stage and I was feeling fed up. In January 2018 I started going for 3 sessions a week, for 6/7 weeks. Best thing I ever did. It stayed away for about a year and a half and even now, 2.5 years later, it is back on my elbows and one or two small patches on my back and feet but overall I’m still very very clear. I would highly recommend it. Now it was expensive, probably cost me about €1,000 in total. But in my mind it was completely worth it. I’d definitely do it again in the next couple of years and would recommend it to anyone. I can’t guarantee it will work for you but I was at a stage where I thought nothing would work for me and it did.

I got phototherapy in James's and was cheap enough 3 sessions a week for 10 weeks.

Gael23 · 10-06-2020 8:03am

I didn’t have to pay anything for the phototherapy. It didn’t work for me but I don’t regret trying it

Fionn · 12-06-2020 5:00pm

mighty magpie wrote: »

Update on this a few months on.
I seen no improvements with the l-glutamine................/QUOTE]

I've been on L-Glutamine and Vitamin D3 since February, havent really noticed much change!

My skin is a deep tan from the recent sunny days and the psoriasis on the back of my hand and wrist where it's most noticeable is a pink colour, My legs are brown too, well where you can see clear skin

I also haven't drank alcohol since mid March and that hasn't had any impact either. I've occasionally taken a swig of cider vinegar which is awful, but I must look into that more closely.

Also to treat another condition I've been on a low carb high fat diet with Intermittent Fasting since around Feb and I don't think that it has done anything for the psoriasis, but has worked wonders for my weight and general health.

wonga77 · 12-06-2020 5:05pm

Fionn wrote: »

mighty magpie wrote: »

Update on this a few months on.
I seen no improvements with the l-glutamine................/QUOTE]

I've been on L-Glutamine and Vitamin D3 since February, havent really noticed much change!

My skin is a deep tan from the recent sunny days and the psoriasis on the back of my hand and wrist where it's most noticeable is a pink colour, My legs are brown too, well where you can see clear skin

I also haven't drank alcohol since mid March and that hasn't had any impact either. I've occasionally taken a swig of cider vinegar which is awful, but I must look into that more closely.

Also to treat another condition I've been on a low carb high fat diet with Intermittent Fasting since around Feb and I don't think that it has done anything for the psoriasis, but has worked wonders for my weight and general health.

It goes to show that different folks = different strokes.
I have tried going off alcohol altogether and noticed zero difference, others swear by it. Same with the diet thing, obviously there are certain foods that might trigger it but dieting and cutting things out has never really cured my psoriasis, although probably was good for my overall health

qo2cj1dsne8y4k · 12-06-2020 5:27pm

Drinking kills me. I’ll get away with about a week of tearing myself asunder and then good luck, I’m in ribbons

Gael23 · 17-06-2020 12:51pm

What’s everyone doing about going back into your work office? Particularly those on biologics

khalessi · 17-06-2020 12:54pm

That is a good questions as I dont think most workplaces realise that meds for psoriasis can leave you immunocompromised.

17-06-2020 1:04pm

Gael23 wrote: »

What’s everyone doing about going back into your work office? Particularly those on biologics

I'm already on biologics for an existing condition. I can work from home as is so think it probably makes sense to continue to do so.

qo2cj1dsne8y4k · 17-06-2020 1:05pm

Gael23 wrote: »

What’s everyone doing about going back into your work office? Particularly those on biologics

I’m not back yet, I’m going back into a beauty salon 😂 a bit nervous but sure look, life goes on doesn’t it. Unless I catch it

khalessi · 17-06-2020 2:44pm

Grace Thoughtless Mortal wrote: »

I’m not back yet, I’m going back into a beauty salon 😂 a bit nervous but sure look, life goes on doesn’t it. Unless I catch it

Have you mentioned being immunocompromised to the higher up? Have they implemented any type of protection for staff?

rubadub · 17-06-2020 2:55pm

mighty magpie wrote: »

Update on this a few months on.

I seen no improvements with the l-glutamine, zinc and vitamin D tablets. Used them for about 8-10 weeks.

I was reading that vitamin D can take a long time to take effect, and that most people are on too low an amount. I saw one study over 6 months and they had good results but were taking 35,000 IU

mighty magpie wrote: »

The kicker for me is that i don't know which of the following has helped me.

I have had huge improvements but have also tried all sorts, but I do think its not just 1 thing but a combination that is working so well.

I have been using dovonex, UVB, cocois, dithranol. I was prescribed steroids but did not get them, I was at the GP for a different reason and he gave me a script. Also for the price of 2 tubes of steroids I was able to buy 2x36W UVB bulbs and the reflector to go with them (still have to get the reflector)

The other things were cutting down alcohol (but still drink way too much), fasting, and intermittent fasting, eating 24hr yogurt and homemade sauerkraut and raw onions. Have only started taking vitamin D3 pills.

I was treating my upper body and left the lower alone, the upper is doing very well and since I started treating the bottom half it has also improved rapidly.

brevity · 17-06-2020 4:47pm

Gael23 wrote: »

What’s everyone doing about going back into your work office? Particularly those on biologics

I mentioned it to them that i was on the at risk category - I've been told that i will probably be one of the last going back into the office.

Chacha97 · 26-06-2020 12:22pm

hi all, unsure if this has been asked before but I seem to be struggling a bit with in ear psoriasis. One is fine, a bit of plaque but nothing major but one ear is has plaque but now seems to be blocked and ringing. It could just be a build up of wax and have drops to soften if that is case but worried that it could be plaques that have fallen into ear canal. Has anyone experience with in ear?

Also I have a patch on my forehead and wondering if any good suggestions for a face moisturiser? I have my body ones and wonder would something more specific be need for the face. Thanks

rubadub · 26-06-2020 12:33pm

Chacha97 wrote: »

It could just be a build up of wax and have drops to soften if that is case but worried that it could be plaques that have fallen into ear canal. Has anyone experience with in ear?

Yes, I used 6% hydrogen peroxide which fizzes up and losens things, I would lie on my side and use a plastic syringe to put a few drops, you can hear it fizzing away then you put tissue over your ear and tilt to the other side . But if there is some other problem hydrogen peroxide can be harmful.

CastorTroy · 04-07-2020 9:57pm

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.

Gael23 · 04-07-2020 10:24pm

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.

I haven’t used Dovobet for a number of years now but I know there is a new medicine called Enstillar foam which has the same active ingredients as Dovobet. I’ve never used it at all so can’t comment in how it works though.

rubadub · 04-07-2020 10:57pm

CastorTroy wrote: »

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?.

Dovobet is prescription only so I would wonder why your doctor is prescribing it if it was off the market.

Dovonex is OTC in the republic of Ireland, and definitely still available.

I was prescribed enstilar and did not buy any as its a steroid which I wanted to avoid, and I am delighted I did not as I have improved hugely since then.

CastorTroy · 04-07-2020 11:31pm

Repeat prescription so I must let him know that it's hard/expensive to get now. It's annoying that what I know works to clear it is what they take of the market

Fionn · 05-07-2020 1:01am

Got Enstillar foam prescription last year. but it didn't really do much for me, it was expensive and didn't last long!

eeloe · 08-07-2020 12:05am

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 · 08-07-2020 5:20am

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 · 08-07-2020 11:27am

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.

08-07-2020 11:30am

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 · 08-07-2020 11:37am

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 · 10-07-2020 9:31pm

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 · 11-08-2020 5:39am

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 · 11-08-2020 10:19am

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 · 11-08-2020 10:21am

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 · 16-08-2020 8:00am

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 · 16-08-2020 8:17am

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 · 18-08-2020 6:36pm

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 · 18-08-2020 6:41pm

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 · 18-08-2020 9:41pm

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 · 18-08-2020 11:11pm

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 · 18-08-2020 11:16pm

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 · 19-08-2020 9:16am

"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 · 19-08-2020 9:19am

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 · 19-08-2020 9:24am

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 · 19-08-2020 10:23am

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.

Psoriasis

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