Psoriasis

Gael23

Call Me Jimmy wrote: »

jeeaauuyssus ryan? that's mad.

Whats mad?:)

Call Me Jimmy

The round trip for some treatment! Nuts amount of travel. Worth it if it gave near 100% relief for a significant time but I would have thought there MUST be somewhere closer (I understand there isn't)

Gael23

Call Me Jimmy wrote: »

The round trip for some treatment! Nuts amount of travel. Worth it if it gave near 100% relief for a significant time but I would have thought there MUST be somewhere closer (I understand there isn't)

I know, I'm not sure if its going to work out to be honest. Theres no Dermatologist in Waterford where I live so I saw this guy in Vincents. I might see if there is a way of getting it den somewhere closer but not convinced there is.
At the moment my thoughts are to do it once and if its too much then go talk to him about plan B.

Mountainsandh

Is the unit in Ardkeen closed ? I had PUVA therapy there... 2 years ago I think. There was a young woman dermatologist on the spot, only occasionally, I was sent there by Dr Buckley (I think) clinic in Clonmel. (I think the clinic is only on once in a blue moon)
Puva is a pain for the sunglasses, too. So not only will you be driving the distance, but you'll have to wear sunglasses for it whatever the weather (and indoors too). My job is somewhat public, and I looked like a fool with my sunglasses indoors to carry out my duties
It really works with me, but mine comes back right quick after, and the round trip was 140 km, plus Ardkeen car park ... It turned out expensive after a while.

Gael23

Mountainsandh wrote: »

Is the unit in Ardkeen closed ? I had PUVA therapy there... 2 years ago I think. There was a young woman dermatologist on the spot, only occasionally, I was sent there by Dr Buckley (I think) clinic in Clonmel. (I think the clinic is only on once in a blue moon)
Puva is a pain for the sunglasses, too. So not only will you be driving the distance, but you'll have to wear sunglasses for it whatever the weather (and indoors too). My job is somewhat public, and I looked like a fool with my sunglasses indoors to carry out my duties
It really works with me, but mine comes back right quick after, and the round trip was 140 km, plus Ardkeen car park ... It turned out expensive after a while.

I will find out about it in Ardkeen but I don't know if its possible to have it in a different hospital from where your consultant is based..
That woman you mention is on maternity leave for the year and Dr Buckley is soon retiring and is not taking new cases. I live half a mile from Ardkeen though!

How dod your job accommodate you doing it? And did you have to wear sunglasses after the treatment was over?

Mountainsandh

I had a chat with my immediate boss, who I have to say is very kind, and he agreed to me turning up late twice a week for so many weeks, and I rang my employer (not my boss) and I had a letter from GP explaining I would have to miss time due to treatment for an agreed number of weeks.

I had to go really early in the morning, to be there for 7.30 or 8, or whenever the slots were free, and drive back to Dungarvan where I work as fast as I could. That was a pain, exhausting (live further than Dungarvan), and when the maternity leave lady said I needed another 3 weeks at least after the initial 4/5, I simply had to give it up.
The tablets they give you to take early in the morning before sessions. They sensitise your skin to the light, and as an aside, your cornea, so from the moment you take the tablets until 4/6 hours later you have to wear the glasses. This is no joke, if you don't, you could get badly burnt, on skin or in eyes.
On the days you don't have treatment, you don't take the tablets and so you don't need the sunglasses.

edit : to be honest, the on spot lady dermatologist didn't do much except review my situation after the few weeks treatment, the nurses were great, and they were the ones giving all the advice, and dealing with me every time. They're the ones running the place really, but I suppose officially if they don't have the dermatologist they might have to close down regardless. They have just the 2 cabins there I think.

Gael23

Mountainsandh wrote: »

edit : to be honest, the on spot lady dermatologist didn't do much except review my situation after the few weeks treatment, the nurses were great, and they were the ones giving all the advice, and dealing with me every time. They're the ones running the place really, but I suppose officially if they don't have the dermatologist they might have to close down regardless. They have just the 2 cabins there I think.

How might I find this out?
I don't know how realistic doing this in Vincents is going to be. I got the feeling that I would see him each time but again will clarify that.

Mountainsandh

I don't know, I don't think you can call there or anything, I guess your GP or your dermatologist would really be the ones with that info.

Gael23

Been doing some research on PUVA and it seems to be quite challenging compared to UVB therapy. Im currently job hunting but I get the feeling that holding down a Job while doing this may not be realistic

Mountainsandh

Well, it's just that it's time consuming to attend the sessions, and the sunglasses thing... other than that, intense moisturising before and after, but that's something we all tend to do anyway.

Where I would be hesitant in your situation, would be how and whether to tell a prospective employer you might have to miss some time due to this.

Even though I got a medical note to explain, I felt bad missing time at work, and having people sometimes covering for me, because psoriasis is not life threatening or anything. I felt I wasn't fully entitled to taking that time off.

You know, and I'm sure a lot of others do too, it's like when it's the middle of winter, you are inflamed and feeling really rotten with it, in my case my hands may be very sore and with crevasses all over with the cold, you possibly have arthritic pains, but you are in this situation where "it's just a skin thing" and you don't feel you could justify missing work because of it.

I know it happens to me once in a while, but I don't think I ever took a day off work because of it specifically, I would nearly feel a fraud, although the distress and pain can be very real.

Dubl07

The skin's the largest organ in the body but psoriasis isn't just a skin thing , it's a full-blown auto-immune condition that can play merry hell with your overall health. Pumping oxygenated blood to all the red patches overworks the heart, fueling the higher skin cell turnover can over-stress other systems. Surfaces other than the skin can be involved - cartilage in PA and the gut in IBS. The psychological impact can be enormous.

I had light treatment in Vincents and the nurses did all the day to day checking and administration of treatment. The doctors saw me as required to monitor and decide on how long a course I'd probably need each time. It's a pity the Waterford nurses can't do the same and just send you to Dublin once every few weeks to see a doctor.

I'd be inclined to give the PUVA a go, if only to get permission to move onto the subsequent treatment protocols. I found that nothing was of benefit until I started on a biologic but perhaps you'll find your personal solution with light treatment or drug therapy.

Gael23

Dubl07 wrote: »

I had light treatment in Vincents and the nurses did all the day to day checking and administration of treatment. The doctors saw me as required to monitor and decide on how long a course I'd probably need each time. It's a pity the Waterford nurses can't do the same and just send you to Dublin once every few weeks to see a doctor.

I'd be inclined to give the PUVA a go, if only to get permission to move onto the subsequent treatment protocols. I found that nothing was of benefit until I started on a biologic but perhaps you'll find your personal solution with light treatment or drug therapy.

Im going to investigate the possibility of having it done in Waterford but I'm not optimistic. Did you meet the Dermatologist each time? My thinking is that a Doctor will need to be there to give you the Psoralen. Its hard to justify going to Vincents for something that takes 2 minutes

DonFred

hi, i being using Elave conditioner for last while and notice my scalp is not flaking any more. Its like it moisturize my scalp. You can buy it in the chemist for 6euros. My scalp feels smooth and not tight anymore since i started using it.

Dubl07

ryanf1 wrote: »

Im going to investigate the possibility of having it done in Waterford but I'm not optimistic. Did you meet the Dermatologist each time? My thinking is that a Doctor will need to be there to give you the Psoralen. Its hard to justify going to Vincents for something that takes 2 minutes

I was having UVB but there were plenty of PUVA patients as well and they'd either taken the pills at home or were supervised by nurses to have the psoralen baths. Doctors aren't around that much at all except to run clinics and visit wards in my experience.

Mountainsandh

Yes, in Waterford too, you don't see the dermatologist, only to assess progress after a certain amount of sessions. The nurses are well able to run it all imo, they're well used to different people's rate of progress, and monitor you for burns, since it could happen that you get a bit "sun" burnt if the length of exposure was a tad too long.

I can't remember 100%, but I think the pills were prescribed by Dr Buckley, and I was told about the sunglasses etc... after that I was reminded of the risks etc... by the nurses regularly. It's simple really with the tablets, just take them in the morning within whatever time to treatment they tell you, and because their effect lasts so many hours (they'll remind you) you just make sure to have the sunglasses, and protect your skin for the required length of time after treatment too. Mine was in winter too, so that's not so bad, at least you're likely to be wearing long sleeves and covering clothing.

Dubl07, yes we know that psoriasis affects more than just the skin, but to people who hardly know what it is (and there are many) it can really appear as just a skin thing.

When I'm all inflamed I just feel so run down.

My hands are still pretty clear, even though I haven't juiced in about 2 weeks ! I feel it's borderline, but I'm starting the juicing again tomorrow so hopefully that will help clear and stall things again, knees are also much better than they were !!!

It seems to clear the toughest, thickest, and largest patches first, but I do still have lots of little drops everywhere. Easy peasy little drops as far as I'm concerned
Inflammation is really down.
I'm always very sceptical about diet changes, but in this case I think it is something to do with reducing inflammation with something that I'm obviously missing in my diet, and that needs to be absorbed "live" or fresh. I've tried vitamin supplements and fish oil capsules and other bottles before, but never with the same effect.

For the scalp I got Yes to Carrots conditioner for myself and my daughter on the advice of a pharmacist, I was very dubious of course, but it's actually very good, and pleasant to use, plus you don't smell of tar. Then again we never have real thick patches on the scalp, just little drops again spread out, nothing huge.

Dubl07

Mountainsandh wrote: »

Dubl07, yes we know that psoriasis affects more than just the skin, but to people who hardly know what it is (and there are many) it can really appear as just a skin thing.

:-) I know, but if I repeat those kind of things, even to myself, they get me down when my joints ache, or I'm spending hours in the loo, or doubled up in pain from cramps. By rejecting the notion of 'just skin' outright, I'm more prepared to inform people who are genuinely unaware of how much P can affect day-to-day life.

For the scalp I got Yes to Carrots conditioner for myself and my daughter on the advice of a pharmacist, I was very dubious of course, but it's actually very good, and pleasant to use, plus you don't smell of tar. Then again we never have real thick patches on the scalp, just little drops again spread out, nothing huge.

Interesting. Do you think it's the vitamin A? (I know; who cares as long as it works for you!)

Mountainsandh

I don't know !

Don't you get Vitamin A with supplements though ?
I tried supplementing with Vit D specifically at one stage, other times with all vitamins supplements without success, so I don't know. I think maybe it's anti-oxidants or radicals or such trending jibberish :rolleyes:

The juicing (just fresh fruit, nothing fancy) is the first improvement I have had in years, and as far as my hands are concerned, it's spectacular. Maybe it's coincidental, and my body just happened to switch into clearing mode at the same time, I don't know, but the juicing is good anyway, so I'll keep it up.

My wrists (they were pretty much covered too) and forearms have improved so much that the pigmentation is very patchy. Since I'm naturally dark skinned (French born), it's a mixture of nearly white, pink where there's still flaking bits, and dark brown, so much so a colleague of mine once exclaimed "what's that ? have you stains on your arms or something ?" She thought the dark patches were the wrong bits when they're really my normal bits
But hey, that's a good sign, normally the flaking bits are so unmistakable that you don't notice the brown bits at all, now it's the reverse !

Gael23

Do you have PSA as well?

Mountainsandh

I think I do, but it's undiagnosed as of yet. I just did a blood test about a week ago, and I'm due to get results soon, but of course the PSA doesn't show so it's a process of elimination. My GP wants that cleared first and then he'll refer me to a rheumatologist.
I'm obviously way less inflamed now so paradoxically I hope that I'll be bad enough to be diagnosed, it would be a shame to turn up there in a remission phase, and then be bad again 6 months later. One of my hands is always a bit stiff so I think that's there to stay, and my feet (again, one in particular, on same side) are always a bit sore. They're the worst bits, but over the years I have had a phase of very bad pain in the heel, then knees were bad a different year, and I've always had lower back problems which might also be related.

In the hand the finger joints are affected, but also the knuckles, and I've had these little balls of liquid you can get at the base of the knuckles, that are often linked to arthritis I think the GP explained. Whether that's psoriasis related or not, I don't know. My nails get affected at different times, not all at the same time, and usually not too bad. One is kind of funny atm with a V shape mark right in the middle under the nail bed.

Over the years, I've never bothered to do anything about all these, I just kind of let it run, sometimes I mentioned the problems to various GPs, who simply said to take paracetamol. I mentioned them more to have them on my file for later rather than expecting treatment tbh.
Only now I'm past 40, and I think if there is arthritis, I would like it treated for immediate relief, but also so that my hands and feet won't be deformed and damaged by the time I reach 55 !

Call Me Jimmy

Mountainsandh wrote: »

I don't know !

Don't you get Vitamin A with supplements though ?
I tried supplementing with Vit D specifically at one stage, other times with all vitamins supplements without success, so I don't know. I think maybe it's anti-oxidants or radicals or such trending jibberish :rolleyes:

The juicing (just fresh fruit, nothing fancy) is the first improvement I have had in years, and as far as my hands are concerned, it's spectacular. Maybe it's coincidental, and my body just happened to switch into clearing mode at the same time, I don't know, but the juicing is good anyway, so I'll keep it up.

My wrists (they were pretty much covered too) and forearms have improved so much that the pigmentation is very patchy. Since I'm naturally dark skinned (French born), it's a mixture of nearly white, pink where there's still flaking bits, and dark brown, so much so a colleague of mine once exclaimed "what's that ? have you stains on your arms or something ?" She thought the dark patches were the wrong bits when they're really my normal bits
But hey, that's a good sign, normally the flaking bits are so unmistakable that you don't notice the brown bits at all, now it's the reverse !

I just got a blender and am blending up bananas and strawberries (with small bit of frozen yogurt) because I was getting NO fruit in my diet at all. What sort of fruit do you go for slash is best ye think? I remembered reading your post about improvement with it.

Gael23

How are you doing with the psoriasis Jimmy? You haven't posted here in ages!

Call Me Jimmy

i think i posted a day or two ago, but there's more activity here since then.

Well I have the added problem of obsessively 'going at' mine with so much different topical **** that I cause myself added problems. As I was saying I watched a couple of youtube videos and olive leaf extract + olive oil (internally) is what im trying now. I am very optimistic about it, like my skin everywhere but on the patches of face that I usually nuke with topical stuff, everywhere else but there the skin looks noticeably healthier.

So I just gotta try and keep my mits on and stop throwing loads of oils and stuff on it, give it a chance on my face cos it's only been 8 days and skin everywhere else looks really good.

Mountainsandh

Jimmy : a lot of pineapple, apples, pears, oranges, blueberries, strawberries, grapes. Have thrown in Kiwis, mango, nectarines too. Not all together, usually 3 fruit at once.

Same here : not a big fan of fruit, and although I love veg, tend to have zero fruit in my diet, so the juicing remedies that.

1 big pineapple from Lidl does me a week, cut a bit, mix with apple or orange + blueberries or strawberries or mango for example, every mixture tastes gorgeous. Kids choose what goes in cocktail every day. I put foil on the rest of the pineapple and keep it in fridge. It's pretty cheap too, if you get all the fruit in Lidl. Cheaper than ointments

edit : oh, and I drink the foam too, some people take it off but I figure there's good stuff in it too, just mix and drink quickly.

Gael23

Mountainsandh wrote: »

Over the years, I've never bothered to do anything about all these, I just kind of let it run, sometimes I mentioned the problems to various GPs, who simply said to take paracetamol. I mentioned them more to have them on my file for later rather than expecting treatment tbh.
Only now I'm past 40, and I think if there is arthritis, I would like it treated for immediate relief, but also so that my hands and feet won't be deformed and damaged by the time I reach 55 !

I don't have any arthritic symptoms but I'm a lot younger than you so it could develop later on.
for the psoriasis I have tried quite a few treatment combinations with varying levels of success. You are right about different GPs having different ideas. Most recently I had a great GP that helped me alot but things happened and I had to change GP twice this year so I waned to see a specialist after all that and get a proper plan in place.

Mountainsandh

To be honest, I never linked symptoms with the psoriasis at the start, didn't know about PA, and still now, not sure, maybe it's just different arthritis.
But now that I know PA can happen, and I've seen someone mention that psoriasis often comes from the mother's side, I'm wondering about my Mum's and grandmother's symptoms of arthritis both. My grandmother's hands were very very bad, one in particular.
Maybe it was just your usual old age arthritis, but I'm sure a lot of PSA got missed over the years because people didn't know about it.

I think the nails are probably a good indicator to watch out for. There are a lot of very gruesome pics online Mine are not as bad as that, but you can see the pockmarks, lines, or marks pretty clearly when they come up on your nail out of the blue. Sometimes when it gets bad strips of the nail lift up, or break.

huskerdu

Mountainsandh wrote: »

To be honest, I never linked symptoms with the psoriasis at the start, didn't know about PA, and still now, not sure, maybe it's just different arthritis.
But now that I know PA can happen, and I've seen someone mention that psoriasis often comes from the mother's side, I'm wondering about my Mum's and grandmother's symptoms of arthritis both. My grandmother's hands were very very bad, one in particular.
Maybe it was just your usual old age arthritis, but I'm sure a lot of PSA got missed over the years because people didn't know about it.

I think the nails are probably a good indicator to watch out for. There are a lot of very gruesome pics online Mine are not as bad as that, but you can see the pockmarks, lines, or marks pretty clearly when they come up on your nail out of the blue. Sometimes when it gets bad strips of the nail lift up, or break.

You definitely need to be referred to a rheumatogist. I am not going to try to diagnose you over the internet when I am not even a doctor but I have PsA and it sounds like you do too. All the signs are there.

I have it too. You deserve to be taken seriously as someone with a debilitating life-long painful condition that needs medical treatment.
Good luck and don't give up.

Gael23

Has anyone ever used an ointment called Cocois?

brevity

ryanf1 wrote: »

Has anyone ever used an ointment called Cocois?

Sounds vaguely familiar. Coal Tar for scalp psoriasis? Think I've used that a few years ago but couldn't handle the smell.

Gael23

brevity wrote: »

Sounds vaguely familiar. Coal Tar for scalp psoriasis? Think I've used that a few years ago but couldn't handle the smell.

Yes thats it but I understood I was to use it on my body. Would that be correct?

brevity

ryanf1 wrote: »

Yes thats it but I understood I was to use it on my body. Would that be correct?

I'm not sure. I don't remember using on my body, I think it was something that I put on my scalp. I can't imagine there would be much of a problem using it elsewhere though.