Psoriasis

Foweva Awone · 18-08-2017 9:12am

rizzee wrote: »

Got the gel there, opened it the car and was not what I was looking for. I keep getting mixed up between gel and ointment!! Went in and the pharmacist exchanged, came to 82 euro for x2 30g of the ointment. Day 1

Would you not give the gel a go? Slides on easier and dries so quickly, also works much better!

rizzee · 18-08-2017 2:14pm

Foweva Awone wrote: »

Would you not give the gel a go? Slides on easier and dries so quickly, also works much better!

I found it was the opposite when I used it last, didn't work as well at all. The ointment sticks on for longer

Foweva Awone · 19-08-2017 9:18am

rizzee wrote: »

I found it was the opposite when I used it last, didn't work as well at all. The ointment sticks on for longer

It definitely does, do you not find it sort of sits on the skin though? I usually put it on at night. With the ointment, it stays on the skin even though I leave it a while before putting PJs on. And is still there by the morning. Whereas with the gel, I apply it, and five minutes later it seems mostly absorbed into the skin and I can put my PJs on without having that horrible wet, greasy feeling all night.

Also (just my experience) with the ointment, it works, but no matter how carefully I "wean" off it, the psoriasis comes straight back. Whereas the gel gives longer lasting results.

I've been using both gel and ointment at different stages over the past fifteen years, so have had a few bouts of both. However as with anything else, what works for one person with psoriasis may not work with someone else. So if the ointment is what works for you, go for it!

19-08-2017 2:38pm

Excellent to find a very large thread already on psoriasis. I'm sitting at the kitchen table with 2 boxes of Novartis Neoral 100mg Soft Capsules Ciclosporin, and 2 50mg boxes. I'm supposed to take 300mg per day/150mg twice per day. Is that a lot? My dermatologist has prescribed it, and the entire thing is costing me an absolute fortune (consultant's fee, blood tests, medication).

However, I'm more concerned about the side effects. They really are unsettling, to put it mildly. So I haven't taken the first one yet. Has anybody here used this medication? How did you get on? Were you on it for long?

PS: Most google results are for Cyclosporin. This product definitely says Ciclosporin. What is the difference between both?

19-08-2017 2:44pm

Also, I have a 500g container of Silcocks Base Dry Skin Relief. It that just a cream for skin generally? (I'm using Betnovate already on the problem areas so until I can phone the dermatologist on Monday morning I'll just have to guess where Silcocks goes).

Foweva Awone · 19-08-2017 3:43pm

[Deleted User] wrote: »

Also, I have a 500g container of Silcocks Base Dry Skin Relief. It that just a cream for skin generally? (I'm using Betnovate already on the problem areas so until I can phone the dermatologist on Monday morning I'll just have to guess where Silcocks goes).

Can't answer your other question, but some people (me included!) react badly to Silcocks Base, something to do with the preservatives in it? If it suits your skin, apply as liberally as you want wherever you want. If not, Emollient Ointment works brilliantly and I've never known anyone reacting badly to it - it's very greasy and messy though, so use the Silcocks Base if it suits your skin.

Foweva Awone · 19-08-2017 3:46pm

As regards the different spellings - a quick call to any pharmacist should clear that up!

Gael23 · 19-08-2017 5:02pm

Deleted User wrote: »

Excellent to find a very large thread already on psoriasis. I'm sitting at the kitchen table with 2 boxes of Novartis Neoral 100mg Soft Capsules Ciclosporin, and 2 50mg boxes. I'm supposed to take 300mg per day/150mg twice per day. Is that a lot? My dermatologist has prescribed it, and the entire thing is costing me an absolute fortune (consultant's fee, blood tests, medication).

However, I'm more concerned about the side effects. They really are unsettling, to put it mildly. So I haven't taken the first one yet. Has anybody here used this medication? How did you get on? Were you on it for long?

PS: Most google results are for Cyclosporin. This product definitely says Ciclosporin. What is the difference between both?

I would think they are the same drug. You need to discuss your concerns regarding side effects with your Dermatologist or GP but not everyone suffers from all the stuff listed so my advice would be to give it a chance.

wonga77 · 19-08-2017 6:24pm

Novartis Neoral is new and I haven't heard of it before, what is it supposed to do?

rubadub · 21-08-2017 12:14pm

Deleted User wrote: »

PS: Most google results are for Cyclosporin. This product definitely says Ciclosporin. What is the difference between both?

https://en.wikipedia.org/wiki/Ciclosporin

Ciclosporin, also spelled cyclosporine and cyclosporin, is an immunosuppressant medication and natural product.

Americans tend to spell things like drugs/chemicals with a Y rather than the I

Name[edit]
The natural product was named cyclosporin by the German speaking scientists who first isolated it[36] and cyclosporine when translated into English. Per International Nonproprietary Name (INN) guidelines for drugs,[49] the "y" was replaced with "i" so that the INN for the drug is spelled ciclosporin.

Ciclosporin is the INN and British Approved Name (BAN) while cyclosporine is the United States Adopted Name (USAN) and cyclosporin is a former BAN.

Budawanny · 21-08-2017 4:35pm

Deleted User wrote: »

Also, I have a 500g container of Silcocks Base Dry Skin Relief. It that just a cream for skin generally? (I'm using Betnovate already on the problem areas so until I can phone the dermatologist on Monday morning I'll just have to guess where Silcocks goes).

Use it on the problem areas. it and other emollients tend to make the skin recover quicker, but wont do an awful lot on its own other than relieve itch.

rubadub · 21-08-2017 4:46pm

If using lots of silcocks base ask the chemist if they have a larger tub, or if they can order it in. I remember a housemate haveing a massive tub of it, maybe 5 litres, and it was much cheaper (per ml).

30-08-2017 6:18pm

So, went on Ciclosporin a week or so ago when I last posted here. No problems... but on Sunday I had a very sore left leg with a lot of pus and deep red marks. I had been sitting at a desk for days so I don't know what brought it on. On Monday it was much worse so I went to the gp. She gave me flux something and another thing and said I had a thing called cellulitis, which apparently can be deadly, and to not put pressure on my leg/take it easy and if it gets worse go straight to A&E.

Yesterday, Tuesday, I went to work, and that was a mistake as I was walking a lot and it became much worse so went to gp again. She sent me into A&E where they took my bloods and I was not infected. The A&E doctor got a marker of some sort, marked around the cellulitis and said if it goes beyond it to come straight back.

Dermatologist was contacted and she was hugely impressive, ringing me after working hours and meeting me first thing this morning. Took me off Ciclosporin and I'm now on a heap of antibiotics for the next 10 days and off work lying with my foot up, a headache and a temperature. She said it takes about 10 days to fully recover. I know if I went back to work in the morning my leg would swell up again and pain something fierce so looks like this ineffable boredom for a while.

I never had psoriasis before. The consultant said that I'm one of only about 5% of people with psoriasis whose psoriasis is itchy. Fatally, I scratched it and it became eczema-like (not sure exactly but essentially by repeatedly scratching the itch I inflamed the whole thing and brought this on myself.) I'll know next time (but still not sure what to do when it's incredibly itchy). Lastly, unlike all the gps, who advised to use Betnovate sparingly, the consultant said use it generously. So I did, and the original problem area is mostly gone now directly because of that.

Budawanny · 30-08-2017 6:31pm

[Deleted User] wrote: »

So, went on Ciclosporin a week or so ago when I last posted here. No problems... but on Sunday I had a very sore left leg with a lot of pus and deep red marks. I had been sitting at a desk for days so I don't know what brought it on. On Monday it was much worse so I went to the gp. She gave me flux something and another thing and said I had a thing called cellulitis, which apparently can be deadly, and to not put pressure on my leg/take it easy and if it gets worse go straight to A&E.

Yesterday, Tuesday, I went to work, and that was a mistake as I was walking a lot and it became much worse so went to gp again. She sent me into A&E where they took my bloods and I was not infected. The A&E doctor got a marker of some sort, marked around the cellulitis and said if it goes beyond it to come straight back.

Dermatologist was contacted and she was hugely impressive, ringing me after working hours and meeting me first thing this morning. Took me off Ciclosporin and I'm now on a heap of antibiotics for the next 10 days and off work lying with my foot up, a headache and a temperature. She said it takes about 10 days to fully recover. I know if I went back to work in the morning my leg would swell up again and pain something fierce so looks like this ineffable boredom for a while.

I never had psoriasis before. The consultant said that I'm one of only about 5% of people with psoriasis whose psoriasis is itchy. Fatally, I scratched it and it became eczema-like (not sure exactly but essentially by repeatedly scratching the itch I inflamed the whole thing and brought this on myself.) I'll know next time (but still not sure what to do when it's incredibly itchy). Lastly, unlike all the gps, who advised to use Betnovate sparingly, the consultant said use it generously. So I did, and the original problem area is mostly gone now directly because of that.

Worth noting that itching is not necessarily permanent .
33 years of psoriasis I've had one bout that lasted a few months

30-08-2017 7:51pm

Actually while talking at home now about my high temperature I was just reminded that when the dermatologist asked me to come in this morning she said that the ciclosporin tends to conceal high temperatures and other things so she wanted to check that. Now that I'm off the ciclosporin my high temperature is obvious.

If anybody else is going on ciclosporin bear that in mind.

rubadub · 04-09-2017 1:42pm

Deleted User wrote: »

(but still not sure what to do when it's incredibly itchy)

You can get eurax anti itch cream or lotion in any chemist. I first heard of it off a housemate with very bad psoriasis. I get a terrible itch maybe every 2-3months, this stuff works in minutes

https://www.amazon.co.uk/Eurax-451567-100-gm-Cream/dp/B001IC5TLE

That £5 tube would be €11-12 here. You can get smaller tubes.

You might want to ask the doc about using it with other creams but I know this guy had loads of other creams and used it with it.

mighty magpie · 04-09-2017 4:29pm

Not sure what is going on but my P around my torso has improved by 80% in a matter of 2 weeks. 4 or 5 pea/coin size plaques improving from inside to out.

diet has been shocking, small bit of weight on.
not as much sport due to injury. playing a lot of golf, 54 holes per week so still getting some exercise.

No creams except some emollient when i remember.

Possibly down to more exposure to the sun but the weather hasn't been great compared to what it was back in may/june and at the same time my elbows which would get more direct exposure have remained the same, if not worse.

brevity · 04-09-2017 5:56pm

Coal tar was the only thing that stopped the itch for me. That and antihistamines.

Gael23 · 10-09-2017 10:14pm

Haven't posted here in a while but doing really well. Got let go from my job a month ago so the stress of that didn't help but got through it.
Was back with Prof Kirby recently too and that went fine, dont have to go back for 6 months now which is the longest ever.

hbhook · 10-09-2017 11:27pm

I posted a few weeks ago that I was trying Silkis.

Personally, the effect was instantaneous but it only worked up to a point. Then it was suggested to me that I use Protopic for my face, Betamousse for the scalp and Enstilar for my P psoriasis. The 3 items are supposed to be used regularly for 3 weeks before you taper off.. The 3 items work for me, especially the Enstilar. The P was pretty bad on my knuckles (fully covered) but after two weeks it's been reduced to barely noticeable except for when I move around...I never realised that my hands or the P itself inflamed! It's weird, when I'm resting it's barely noticeable but when I move around the 4 points of my knuckles are reddish/noticeable/.

I think the Enstilar is kind of a spray version of Dovobet (ask for it specifically) but I'd never had that prescribed to me before..I hope his helps someone!

Do your own research...

Gael23 · 11-09-2017 12:16pm

Yes Enstallar is the same active drug as Dovobet, never used it myself though. I find Protopic brilliant, my face has never been so clear.

Call Me Jimmy · 11-09-2017 4:26pm

Have you had some time off after protopic as well? Like did it rebound?

wonga77 · 11-09-2017 4:34pm

Is protopic prescription only? Never used it

Gael23 · 11-09-2017 6:18pm

Call Me Jimmy wrote: »

Have you had some time off after protopic as well? Like did it rebound?

I use a maintenance dose once/twice a week to stop that

wonga77 wrote: »

Is protopic prescription only? Never used it

Yes it is

rizzee · 21-09-2017 4:49am

On the dovobet about a month now, 99% better. Starting to cut down to every 2nd or 3rd day and avoiding spots that have dissapeared 100%.

Still have it in my scalp however (the only place i havent used the dovobet,obviously

) ive been on the elave shampoo for over a year, no change. Feels like little lumps/cuts on the head and anytime i scratch or remove a tshirt/hoody im covered in flakes.

Starting to irritate me as i get a bit self concious sometimes, can anyone recommend me something over the counter that might help?

When i was getting the dovobet i asked the gp about the scalp and he pretty much said keep using the elave... I should have questioned more but i was just happy to get the dovobet as i knew it worked for my skin in the past so left it...

Ive also used betamouse (sp?) In the past with no success. I keep my hair short, shaved back and sides and there is a noticable rash all around the head.

Any recommendations would be appreciated

Thanks

rubadub · 21-09-2017 11:15am

rizzee wrote: »

I keep my hair short, shaved back and sides and there is a noticable rash all around the head.

The 1 advantage of that is that you can at least apply creams better.

I used OTC dovonex ointment (not dovobet) on my scalp with great success. It had warnings not to use it, so I used it very sparingly and had no problems. I now dilute it with castor oil, I put it in a shot glass and mix together with the tip of a butter knife.

There used to be a dovonex scalp product so it is not like its some rule it can never be used. The scalp product was the same % of active ingredient but appeared to be diluted. It seemingly came with a nozzle and was able to be applied with long hair. So I guess the advice with the dovonex ointment stuff I get is since it is the consitency of vaseline and would make a mess -if you had long hair.

Scalp is the best it has been in probably 10 years, and I could cut the hair as short as I want too, before I used a large blade, like a 4 or minimum a 3 as the patches were very noticeable. Now I have a 1.5 blade (which is a thing!) or a 2.

fionny · 21-09-2017 1:00pm

Anyone tried the new delivery method of Dovobet called Enstilar (http://enstilar.com/) same ingredient... but apparently soaks better and need less..
My doc just gave me a script for it to try.

hbhook · 21-09-2017 1:10pm

fionny wrote: »

Anyone tried the new delivery method of Dovobet called Enstilar (http://enstilar.com/) same ingredient... but apparently soaks better and need less..
My doc just gave me a script for it to try.

Yeah I have. It's very good. I'm using it every other day now just to see if my p completely disappears. Right now I'm left with a pale pinkish colour at the problem areas. Couple of spots I'm still treating but it's so, sooo much better than it was to the point where I'm trying to break the habit of trying to hide it!

wonga77 · 21-09-2017 4:13pm

Never heard of it before, sounds interesting, its a spray foam, is it not very messy to apply?

Gael23 · 21-09-2017 6:18pm

I have yet to find something that works for my scalp. Tried Elave and it dried my scalp out even more.

Psoriasis

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