What do you know now that you wish you ha... - Beyond Psoriasis

Beyond Psoriasis

2,719 members482 posts

What do you know now that you wish you had been told when you first started experiencing psoriasis?

MaddieHU profile image
MaddieHUHealthUnlocked
21 Replies

What general advice would you give a person who has just developed psoriasis?

Written by
MaddieHU profile image
MaddieHU
HealthUnlocked
To view profiles and participate in discussions please or .
21 Replies
beaton profile image
beaton

Oh, that's a hard one, as I said before when I first visited my GP he was not concerned as to what the problem was. He gave me some cream and more or less told me to get on with it. It was a few years before I got any Psoriasis cream. I did not know there were different types of Psoriasis or that it could lead to P.arthritis.

So if someone told me they thought they might have Psoriasis or had been diagnosed with it, my advice would be to read up as much as possible. Find out what creams and shampoos were available and if necessary see a rheumatologist.

.

I would like to have been warned about the possibility of psoriatic arthritis in the future.

Nuttyshirlz profile image
Nuttyshirlz

I was only a nipper so I could not have asked but I’m guessing my parents did.

But I can not ever remember anyone saying Or even talking about i had a chance of getting arthritis with it.

I have psoriasis arthritis now x

I would have liked to have been told that both PSA and psoriasis can be treated naturally using available supplements. Everything the dermatologist prescribed came with the potential to add to my health problems. After decades of guttate, inverse, psoriatic arthritis, plaque (psoriasis vulgaris) and erythrodermic psoriasis, I was able to get rid of it all with just three supplements!

Art

vascy_errol profile image
vascy_errol in reply to

Art

Could you give some details on what supplements you are now taking, including dose, etc? Also if there is one particular producer as there can be variations across the "same" described supplements. TIA

Errol

MCDW profile image
MCDW

To see the GP, and if the problem isn't controlled by their suggestions, to press to see a consultant. To also consider dietary changes/supplements.

Seahorse02 profile image
Seahorse02

I wish my first dermatologist had not been so gung-ho positive - she just KNEW the first biologic would put it all into remission. Then she was POSITIVE the second biologic would work. The third one she was a little less sure....,meanwhile I was dying emotionally.

Hi,I've been getting psoriasis flares for 30 years now,when I first started with the rash I didn't have a clue what is was,I was covered in spots from head to toe.so saw my gp who took one look and gave me some smelly, steroid coaltar ointment to apply 2to3 times daily for no more than a week or so . Little did i know that over a period of time after applying it on and off for few years it would thin my skin on my face and neck .so these days I am very careful what I put on my skin and avoid steroid cream .I wish I had heard of other treatments back then.

vascy_errol profile image
vascy_errol

Couple of things:

firstly, how think and gloopy some of the creams are and that they can ruin clothes. Or that they require someone else to put them on for you - those back roller type things are just crap!!

Secondly, the dosage of the cyclosporine.. I had 50 mg and 100 mg tablets. Each box said take one per day (I think) but the boxes are of very similar size and I got a big carried bag full from the Hospital Pharmacy and didn't speak directly to my Derm. So... I ended up taking 50mg per dose, rather than the 150 mg I should have been taking...corrected after 2 weeks (Christmas came between).

Bumley profile image
Bumley

Like beaton I would find it difficult to respond because it is such a personal experience. I think beaton's thoughts are mine

tallgal profile image
tallgal

I would have liked to be told that steroid creams have a rebound effect and can make the psoriasis worse. I have found Exorex best .But I now take turmeric with black pepper and my psoriasis has virtually gone. It is of course an anti inflammatory. I know psoriasis can come and go but we'll see.

Tmarie57 profile image
Tmarie57 in reply to tallgal

Can you tell me the name of the tumeric and black pepper supplement you are taking?

jax553 profile image
jax553

Mine was completely Random, I was having pain and burning in my hands feet and legs, I had a small crater in the palm of my hand, I went to my appointment thinking whatever can this be, I walked in, the Doctor said to me, What is that pointing at this little crater in my hand, I said oh nothing just put a plaster on it. He excused himself and told me he wanted to consult with a colleague, of course, what can I say but ok, Doctor, 10 mins later, the consultant came back with another Doctor, they both looked. and ooed and ahhed, The other Doctor said good call and shook the consultant's hand, I still was not told, Until a letter to attend Dermatology arrived on my Doorstep.

Rosedail profile image
Rosedail in reply to jax553

OMG! That’s crazy awful behavior!

susieanna profile image
susieanna

Get as much sun as possible.

Rosedail profile image
Rosedail in reply to susieanna

Except don’t burn! For those of us who burn easily it can make it worse long term.

Terrymay profile image
Terrymay

Petroleum Jelly will clear it in places where clothing is not a problem as it keeps the skin moist , Drink plenty of Water instead of Alcohol as Alcohol causes your Kidneys to get rid of more fluids & your skin will be drier, sun does help but only as it makes your skin more moist & makes you drink more fluids as long as they are non Alchoholic, mine was always worse after a spell of drinking due to the stated causes above.

Terrymay profile image
Terrymay

I would have liked to have been told to keep your skin moist as I never use to drink much water to keep my skin moisturised as Tea ect does not get to the right places plus not enough & keep my skin moisturised with a cream, also to keep away from Alchohol as this causes your body to pass more fluids than you are taking in, I always noticed it was worse after a drinking spell. Why its better in the sun is because the heat moisturises your skin & makes you drink more which should be water not Alchohol.

jax53 profile image
jax53

I have pustular psoriasis and was recently told it was very Rare, along with Psoriatic Arthritis, which is also rare. I wish I was told 20 years ago, and not a couple of months ago, I cannot take it all in, it is leaving me frustrated and Angry, I went to see my Rheumatologist, and told her I was having issues with my feet, and hip, I have Arthritis in both hips knees and hands feet, I am having terrible time just standing and have my feet work is a chore, My rheumy said. exercise, ignore the pain, and it will be ok, I nearly had a fit, I said to her what this pick on jenny day?

in reply to jax53

Your rheumy said,' exercise, ignore the pain, and it will be ok' ! Spoken like someone who has no clue what the pain is like!

I was able to put my PA into remission for about a decade now using the laundry booster, Borax! Google arthritis and Borax for people who have found it effective for multiple forms of arthritis. I was leery at first and just tried soaking my feet in a small foot bath of a warm saturated solution of borax and they started feeling better within a couple of weeks so I tried taking borax and the PA has been in remission ever since!

Art

jax53 profile image
jax53 in reply to

Hi, Thanks for the info, I think I am going mad, My feet feel like I have a tight band around them and are swelling, has anyone any ideas? I am going to my GP in the morning and I hope I get some answers.

You may also like...

When did you first experience psoriasis?

about when you first discovered your diagnosis. When did you first notice symptoms of psoriasis?...

When you were first diagnosed with psoriasis, what was your doctor's initial advice?

When you were first diagnosed, what was your doctor's initial advice? What were the good things you...