Posted Wed 9 Aug 2017 13.56 by ClearskinPls Since 2001, tried uvb and creams
Ha ha! Im sure your Scots friend had your best wishes at heart...dont discount his idea ; old remedies are sometimes the best ! Psoriasis has been around for forever
Posted Wed 9 Aug 2017 14.07 by DodgeWC51
Muck does have it's uses. Another old country treatment for skin complaints is to take crushed oats, put in a muslin cloth and wet in hot water, when you squeeze the muslin you get a white milky liquid, very rich in soluble Vitamin E, soothes skin wonderfully. Now sold in a flash bottle at scary prices advertised by a super model. I use the cheap supermarket porridge oats. Also a dry handful with a drop of liquid soap will take off dirt , oils and paints from the hands as well as the chemicals such as Swarfega. A drop of Tea Tree oil about £2 a bottle, lasts for a lot of treatments, in a 1 litre bottle of cheap shampoo diluted down to 25% , you get an expensive shampoo.
Posted Wed 9 Aug 2017 14.13 by ClearskinPls Since 2001, tried uvb and creams
Yes tea tree is a good tip, oats and muslin I think I would probably get half on me and the other half all over the bathroom! Ive been taking tumeric, lots of positive benefits. .I think it did calm my psoriasis down a bit ...also as lots of spinach, all helps the body
Posted Wed 9 Aug 2017 20.41 by DodgeWC51
Dump the muslin and oats in the bath, works the same way. Food wise Seaweed extract has a lot of good properties, and can now be bought for human consumption. mainly for Iodine and other trace elements. Though like all these things be careful, over dose can be harmful.
There is a lot more solid scientific research into feeding animals than humans, but then you need to know your input into a production system ie farm animal so you can make the best profit. I'm not a cynic (Honestly!) just so many health food/supplement adverts make me laugh. High in Protein! What type? Soluble or non soluble, 90% less fat, compared to what? See my thinking? :-)
Posted Sat 12 Aug 2017 20.17 by marylou
Hi All, took my first dose of Ciclosporin today. Curious to know did anyone experience any side effects such as increased body hair (more so for the women) or increased growth of the gums?
Posted Sat 12 Aug 2017 20.43 by DodgeWC51
Hi Marylou. I consulted my dentist when I first started taking it, he told me it would be years of taking it before he would expect to see an effect. Why not check with your own Dentist, they won't mind, in fact they need to know if you have any treatment. ? Hair, I never noted any difference, but I'm male. Main things are tingiling, lips, , fingers and toes., and a sore throat. Ask your Doctor for a throat gargle, or Dequidin lozenges will soothe nicely. Just follow the Dermitologist advice. You may well feel a bit knocked about to start with, but it is worth it. Plenty of help and support here
Posted Sat 12 Aug 2017 22.34 by marylou
Thanks DodgeWC51. I'm due a check up with my Dentist next month so I will be sure to mention it then. I was just curious as this is the first oral treatment I've tried, up until now it's always been creams.
Posted Sun 13 Aug 2017 22.45 by Blaynster Sufferer for 8yrs+
Marylou I am having excess hair growth on my chin. Nightmare! Having to pluck my chin daily 😩
I have also been really suferring with aching joints particularly knees and ankles and now my back and unfortunately planter fascititus has flared up too in my feet 😩
That said my skin is looking amazing and almost 6 weeks in I am very impressed. Is a relief to not have many skin symptoms anymore 😊👍
Seeing consultant at end Aug and am nervous about stoping ciclosporin as just dont want it to come back.
I still have marks on skin but very faded now and no scaling and very infrequent itching so really pleased. Apart from the muscle pain and joint pain.
Blaynster: Good news and bad news I'm afraid. The scales will come back when you stop taking the Cyclosporin. Though mine is not as bad as it was, so for me is livable with, plus the other side effects disappear! I can taste things again and if I have a hot drink, it dosen't feel like a mouthful of fizz. Good news: There are new treatments all the time, my dermitologist is suggesting an injected treatment, which reduces side effects considerable, and is less disruptive of life in general.
I'll discuss it further with her in October and let everyone know. But one helpful thing she said to me 'You don't have to live covered in it. Everyone is different in there levels of tolerance and the effectiveness of treatments. There's one out there that will work for you.
Posted Tue 22 Aug 2017 20.37 by Blaynster Sufferer for 8yrs+
Thanks DodgeWC51 useful to know. I suppose I am just dreading it coming back as bad as it did before.
Saying that I have a phototherapy lamp now which I will be able to use once I have stopped the drug so hoping that will help keep the psoriasis you can see at bay :-)
Consultant next week so will see what she says
Posted Tue 22 Aug 2017 21.46 by DodgeWC51
Been about ten days since I stopped taking Cyclosporin. There is some return of flakes and a bit of redness,around the lower back and a bit on the ankles. I was warned that would happen, the immune system getting back on track. It's now a balancing act , no drug is completly harmless, if it was it wouldn't work. They do after all change how your body works. The good side is I can now taste things again , no odd tingles or aches. The Cyclosporin did what it had to do, which was treat a pontentially fatal condition. Now just the normal, things I was doing before is keeping it easily managable. so I'm happy at the moment. See what happens over the next couple of weeks, if it dies down again great, if not then when I see the Doctor in October I'll discuss further treatment. The UV treatment that hospitals provide is a lot different to any commercialy available product, and of course UV has it's own risk. I come from Jersey, which argues it is the melanoma capital of the world, yes, I know New Zealand claims that , but there are less of us, it's a lot smaller rock. Anyway, even as primary school kids we were taught about avoiding sun burn and covering up , so be careful. A little may well help, but avoid overcooking.
Posted Tue 22 Aug 2017 22.27 by Holly1 Has psoriasis since 2001
I'm coming off my tablets in one months time and I'm dreading Its nice to hear how your getting on being ciclosporin free dodgewc51..
Blaynster im sure you may know but just in case you haven't been told. My dermatologist told me that although your immune system comes back quite quickly the skin takes a little longer so she said to make sure I use factor 50 on my holiday as my skin will still be sensitive to the sun. She didn't say how long it takes, so maybe worth asking how long before you use your lamp :)
Posted Tue 22 Aug 2017 23.19 by Blaynster Sufferer for 8yrs+
Thanks DodgeWC51 and Holly1. Good to know from people going through it all at the same sort of time, what to expect.
I have done UV treatment at hospital so know all about the risks associated with it and plan to be very careful. My skin is fair so I can only do seconds initially anyway. If it helps me manage it then great.
It is a proper uv lamp with narrowband UVB bulbs so the same as a hospital. Totally take on board what you say though so thank you.
I may have another 6 weeks On cyclosporine so will see how it goes. The joint and muscle pain is pretty uncomfortable though. See what the consultant says next week.
Thanks guys
Posted Thu 24 Aug 2017 16.30 by ClearskinPls Since 2001, tried uvb and creams
So now been on ciclosporin for 4 weeks. Results are impressive. ...99% faded away.
Side effects: some muscle pain but shorterm. Some Gum growth so i do lots of flossing to keep that at bay.it works for me.
As Dodge suggested baby lotion to keep the skin supple...im not a doctor but if you don't scratch , the skin responds by not getting red and no outbreaks.
I think this treatment is excellent but when i come off the treatment ....it may or may not creep back....who knows. ..fingers crossed..
good luck all
Posted Thu 24 Aug 2017 16.47 by ClearskinPls Since 2001, tried uvb and creams
Im glad your results are positive since coming of ciclosporin recently Dodge.
Im unsure of Uvb; overcooking in my opinion makes my condition worse. Whats your next course of action?
Posted Thu 24 Aug 2017 16.57 by Blaynster Sufferer for 8yrs+
Hi ClearskinPls I definitely don't plan on overcooking at all!! I burn very easily and always have done. I have always used a high factor skin protection when in the sun and tend to sit in the shade more than the sun itself. Its too hot for me.
The UVB therapy has helped in the past control my psoriasis so thats why I have invested in my own lamp so I don't have to go to the hospital for 30 seconds treatment 3 times a week. I can do it at home now.
I will of course be taking as much advice as I can from my dermatologist and the company I purchased the lamp from have a helpline too as they are specialists in supplying UVB lamps for chronic skin conditions.
I don't know when I can use the lamp yet but will be very careful. Its all about finding what works for you best and everyone is different. So pleased to hear yours has also faded and cleared a lot.
My arms are the best but my legs are not great though there are no plaques just a lot of scarring still. If thats the best I can expect them great at least I am not leaving a skin trail wherever I go anymore!!!
Posted Thu 24 Aug 2017 17.02 by ClearskinPls Since 2001, tried uvb and creams
Hi Blaynster...its a silly question ..I apologise in advance....are the lamps definitely hall marked by Phillips ..its important. Also keep out of natural sun if your using lamps
Posted Thu 24 Aug 2017 17.11 by Blaynster Sufferer for 8yrs+
Yes 100%. They are Phillips 100w/TL01 UVB Medical Narrowband tubes.
The company is called Much Better Skin and are leaders in narrowband technologies.
Full researched and investigated to make sure correct.
I don't sit in the sun anyway so would no issue :-)
I will only be using it 3 times a week the same as if I was at the hospital having treatment but I will have the convenience of doing it at home.
It would not allow you to do more than 5 minutes max anyway but I only ever got up to about 3 minutes at the hospital after 4 months so...........
Don't worry I will be careful :-)
Thanks for the concern
Blaynster: There is now clothing available that has specific UV protection rating. Mostly from outdoor shops as it is used by climbers due to UV effects at altitude and those working in tropical climates. reduces the need to keep topping up with creams.
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Posted Wed 9 Aug 2017 13.56 by ClearskinPls
Posted Sun 13 Aug 2017 22.45 by Blaynster