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Psoriasis help!

(11 Posts)
TeddyIsaHe Mon 20-Feb-17 16:05:17

I've had psoriasis on and off for 15 years now and it's driving me barmy. I've recently had a baby, and whilst pregnant I was blissfully free of it. However, I've had a flare up to end all flare ups since giving birth.

I'm covered, head to toe and I honestly don't know what to do. It's awful, painful, weeping, huge huge plaques of the stuff on my face, arms, legs, trunk, scalp - everywhere! I've got a drs appointment on the 2nd March, but until then does anyone know of any cream or anything at all that could just help even slightly? Basic emollients do nothing, hydrocortisone doesn't help, not sure I can use as I'm breastfeeding (psoriasis on nipples also - ouch!) I don't care how much it costs, I just need something to make me look less horrendous and be in less pain!

Bettertobehealthy Mon 20-Feb-17 18:12:32

Hi TeddyIsaHe ,

here I am going to make a suggestion which might be thought somewhat out of the ordinary when considering Psoriasis treatment. You have obviously tried a number of different remedies without much effect. This is worth trying , costs very little, is perfectly safe , with various research led papers pointing the way to likely improvements in your PASI score.( Psoriasis Area and Severity Index )

As you know , psoriasis is a hyper-proliferative disorder of skin cells. It is well known that vitamin D has strong anti-proliferative effects, it is also well known that Vitamin D (which is a hormone - not just a vitamin ! ) can be influential in the degree of psoriasis for any particular individual.

You reported that whilst pregnant , your Psoriasis much reduced. Did you know? , that your level of Vit D hormone ( 1,25,(OH)D3 ) doubles or trebles , whilst pregnant. It is thought (by researchers ) that this rise is to modify and regulate your own body's autoimmune response to the foetus. In your case it seems that it has had the effect of limiting your psoriasis as well. Psoriasis is involved with your auto-immune response. Vitamin D can regulate your auto-immune response.

My suggestion to you , is that you get your vitamin D level checked. It may be that you are low. It is well known that UVB on skin , (which produces Vitamin D) , can have beneficial effect upon psoriasis.

Vitamin D researchers , nowadays , recognise that levels in this country UK are lower than optimal, in many people. Very often around 40 - 70. The human body evolved to have levels around 120 -140 ... throughout millions of years of evolution . Our modern lifestyle reduces our ability to get Vit D from sunlight , you are very likely to be either deficient or insufficient.
Perhaps you can ask your doctor to get your level measured ? If he is not forthcoming , you can get a quick easy test from the NHS Path Lab at Sandwell Hospital, West Midlands. They charge £ 28 for a private test. Your blood spot on blotting paper is posted to them, and you get a result by e-mail in less than a week. Go here for details. www.vitamindtest.org.uk/

I would strongly suggest , that IF your level is below 100, that you take some supplements , to raise your blood level to at least 100 , preferably higher , 120 - 140 say. This is the level that would be considered very acceptable by Vitamin D researchers. It is the level you would naturally come to , if you lived an active outdoor lifestyle , in sunshine, making all the vitamin D you need. try and make sure that you supplement Daily , it is much more effective that way , rather than weekly , fortnightly or longer.It is much more likely to improve psoriasis with daily input.Daily supplementation is also the mechanism by which Vitamin D goes into your milk.

Incidentally , if you reach this level, your milk , will contain a lot more Vit D than is likely currently. This is Very good for the baby.
Often , unsupplemented mothers have milk with around 25 IU per litre of Vitamin D , whereas mothers living the ancient lifestyle I have described , have Vitamin D levels of about 400 IU per litre in their milk. We do know that this is the optimal level, that is why formula milk is fortified with vitamin D , to 400 IU per litre.

You may already be taking a low dose supplement , possibly 400 IU , in a multi-vit etc, this however will not raise your blood level by very much. Just 10 points , in the long term.
If you get your level checked , and it is around 40 - 50 ish , then you might need 2000 IU to 5000 IU , or more , to raise it up to the levels I have described.

Have a look at the "Vitamin D Association" website , for a lot more information concerning Vit D, mothers , babies and so on. Particularly have a look at the lecture by Professor Hollis , of the Medical University of South Carolina, and the benefits of Vitamin D to pregnant and breastfeeding mums.

I have posted quite a bit about Vitamin D and its effect , on Mumsnet. Search under my nickname ,

Well, I hope that this is helpful.
Whilst nothing is guaranteed , this suggestion could very well help you.

best of luck

BTBH.

Pleasemrstweedie Mon 20-Feb-17 19:23:06

Beat me to it! Yes, get your vitamin D level checked. If you can't wait for your GP appointment, and they might not know about the connection anyway, you can pay to get it done here.

http://www.cityassays.org.uk/vitamins.html

TeddyIsaHe Mon 20-Feb-17 21:05:56

Vitamin d! I've used calcipotriol cream with success in the past so no idea why I didn't think of it. Will request a blood test at my appointment, and in the meantime start taking some supplements.

Is there any topical treatments anyone knows of while I wait to see if it works?

ILookAtLifeFromBothSidesNow Mon 20-Feb-17 21:21:04

OP, poor you, psoriasis sucks!

Ihave scalp psoriasis. I have read elsewhere about the benefits of vitamin D if you have psoriasis and do take a daily dose.

I can't help with body treatment sorry but the one shampoo that really helps control my scalp psoriasis is Aveda's Scalp Benefit shampoo. Not cheap (about £18 for a standard bottle) but worth it for the relief!

I hope others come along with suggestions.

Good Luck! biscuit

satsoooma Mon 20-Feb-17 21:26:44

This is everything I can think of that might help while you wait for a GP appointment. Sorry if. Some of it is obvious. Hopefully one of them will help.

Vitamin D tablets.
Short showers and water not too hot.
Don't use soap to wash.
Use unscented, non bio wash for clothes/bedlinen. I use ecover.
Is there any food/drink (thinking alcohol on particular) which you cut out while pregnant, but have now reintroduced?
Hydromol ointment. It is crazy greasy and you can use it as a moisturiser or shower gel substitute. You can get it without prescription and it is what I was prescribed for cracked skin when I finally got to see a psoriasis specialist.

MiniMaxi Mon 20-Feb-17 21:28:19

Hello, sorry to hear that. Sounds painful! My husband has psoriasis and he finds coal tar cream helpful - you need a prescription for it from the doc. Also try bathing in Dead Sea salt which you can get from Holland & Barratt and other places. Hope the Vit D helps too!

headintheclouds24 Mon 20-Feb-17 21:34:04

You poor thing totally feel for you. I have P but only mild, arms and elbows but even that has been enough to haunt me over the years. Self conscious about wearing tshirts etc , trying to manage it with various creams and steroids and nothing worked well. And the ones that did were super strong and making my skin really thin. Like you, it disappeared through my preg which was amazing then came back pretty bad afterwards. Back to the doctors, saw a random different doctor who prescribed me something I had never tried before and it was like a magic cure no joke. Not going to claim this will work for everyone but for me it did , I love the stuff. It's light non greasy and dries in seconds. It's called Exorex lotion, it's 5% coal tar solution. Look it up! I think you can even buy it off their website. Or just suggest it to you doctor so you can et a prescription for it. Lasts ages as you don't need much. Your P does sound quite nasty so can't guarantee it will do the job but worth a try right?

Can't tell you how thankful I was for that doctor that day looking up something different for me to try that wasn't a greasy ointment.

Be interested to know how you get on! Really hope you can find some relief...and bloody well done for continuing breast feeding! You deserve a medal. Sending you these flowers

satsoooma Tue 21-Feb-17 08:25:46

Hi Teddy! I've been thinking about this some more, and psoriasis on/near nipples when you are BF is just awful. It can't be good for your mental health, or for your chances of continuing to BF.

I think you could phone up your GP and get an emergency appointment. If your GP is not much help (particularly as you won't be able to use many of the creams on your nipples if you are BF, in case your baby ingests them), maybe push for an urgent referral to a dermatologist who might have some other ideas.

Bettertobehealthy Wed 22-Feb-17 18:12:30

TeddyIsaHe ,

Yes , you may have given yourself an answer, Calcipotriol , is an anti-inflammatory , combined with an analogue of vitamin D hormone. IF you take the parent compound supplements i.e. VitD3, your own body will create the vitamin D hormone , within each cell. very much worth trying .... in my opinion ! Make sure you take it daily ! . Even if your doctor suggests weekly supplements. Make sure you get your level up over 100. preferably 120 - 140 ( Levels of 50 up to 100 may not be as effective ) Good Luck .
Get it checked independently, if necessary at

www.vitamindtest.org.uk/ .

BTBH

araclouise Thu 23-Feb-17 00:27:47

Iv suffered with it and excema for years had every lotion off the docter steriods the lot was in utter agony with it before Xmas and my friend mentioned coconut oil I used it and I have been free of skin problems after just 3 days of using it it's amazing . I got mine from tesco . You can get it most places tho comes in a glass jar it's hard like butter but melts in your hands make sure you get 100 percent organic xxxx

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