[ALWIN]

Hi all

Can anybody clarify something?

I get very pink cheeks and bridge of nose, neck, v. and the skin is 'lumpy' in the same region. It's discrete and not a problem, and happens all year round. Except for the lumps it makes me look full of health! I associate this with mild lupus. i do still feel well - very slightly achy, but holding my own on the energy front. So all is quite well.

However, I have been out working recently and despite sun block, trousers, sleeves, etc. I keep getting lumpy 'hives' across my shoulders and neck from leaning forwards and that area getting exposed. I thought sun block might stop it and i reaply it hourly by the clock on account of sweating a lot. I am under no illusion. It is definitely the sun. Happens like clockwork. Is this another lupus type rash or do people generally only get 1 type of rash? I have started to itch generally as well - arms, legs, torso - but no rash.

I've also got little tiny white pin prick sized lumps on my palms which itch. on top of the brown scaley jobs that seem to be growing on the back of my right hand i 'm beginning to feel like a bit of a leper.

Going to GP on Fri out of curiosity, but i know none of the GPs at my practice are familiar with lupus, hughes, sjorgrens, etc.

Can one person get several types of rashes at the same time as a result of lupus, or should i see each in it's own right as a separate entity?

Hope that makes some sense.

 

[ALWIN]

PS

I believe there is a special fabric that does not allow sun to penetrate.
Does anybody know what it is called, if it works, and where to buy items of clothing made of it?

I am also wondering if anybody has tried wearing the very thin sportswear to keep cool whilst covering their skin becasue i believe the modern sportwear fabrics are good at keeping the skin dry when sweating.

Otherwise I seem to be stuck with the idea of some sort of high collared kaftan and trousers. Or a cotton scarf tucked down the back of my neck?

I would really appreciate your experiences in dealing with this. I wear a wide brimmed hat, and am hoping my GP will prescribed the highest, highest sunblock in large quantities on the NHS... Is this likely?

With gratitude as always ...

 

[Maia]

In my experience, my facial rash is red but not itchy/raised. I will get small raised bumps along with redness on my arms that does itch slightly (especially if I get started scratching it then it itches much worse).

There are different types of rash possibilities with lupus, additionally there are other conditions which are associated with lupus which cause itchy rashes and hives/swelling such as types of vasculitis.

It could also be unrelated to lupus and some sort of allergic reaction to something in the environment. I've known of a few people that have had hives of unknown origin with bad itching too!

Is it possible to stay out of the sun or wear something to cover up these areas? There are ways to put fabric along the bottom of a hat to cover that area of the skin for instance and long sleeved UV protected shirts to wear. Sunblock is often just not enough because it doesn't block all the different types of rays that may cause our skin to react. Check your bottle and see if it's UVA and UVB resistant and at what degree of protection.

 

[Kate G]

Hi Alwin

You can definitely get high factor sun block on the NHS but at £7.10 a prescription you may be just as well off buying it over the counter, especially if Boots has a special offer on! It's worth asking your GP what strength sun block he/she can prescribe though.

Good luck with this. I'm off shopping soon to stock up on headscarves and long-sleeved thin tops for the summer.

 

[Katharine]

Hi Alwin,

I am extremely photosensitive and no sun block in the world stops me getting hives. I'm afraid the only solution I have found is to cover up.

I managed to get some sporty (and cool) tops which are sun protected from Nozone UK. They are really nice to wear and definitely good for anything sweaty. Otherwise the best clothes are tighly woven and preferably dark colours.

I found that a search on "Sun protective clothing" in google UK (UK pages only) gave me good results as I wanted to avoid any US sites and the potential duty to be paid.

Katharine

 

[ALWIN]

Thank you very much everybody.

Thanks Maia - my face is not itchy. Just other places. It could be that the sweating when I work makes me itch and then the itch, scratch, itch cycle sets in. It's calmed down since stopping in for a couple of days.

Doctor (new one - never met her before) says brown raised things on back of hand is 'sun damage'. I've managed to find some good gardening gloves that are cheap enough to replace every other day with cotton backs and rubber palms / fingers, so no excuse for not wearing gloves now. I got fed up of them all wearing out so fast and so was not replacing them as much as I should.

It's ironic i should have sun damage because i have never been a sun bather, and only took up proper gardening 3 years ago. before then I had a tiny garden that was done in 30 mins a week!

She says the hives are unimportant. And i suppose they are no more than cosmetic, really. will focus on better clothing though.

She looked up a couple of sunblocks available to those with extreme sun sensitivity like vitilligo for me to buy (Kate - your are quite right about cost - and it's easy enough to pick sun blocks up at chemists). Even if it were cheaper on NHS, she can only prescribe sunblocks for severe reactions to the sun, which, mine is not.

Thanks Katharine. Will get googling. I have tended to stay away from spotswear because it is usually tight fitting to hug sporty physiques. Nobody wants to see my body clad in skin tight garments though. It 's just not nice. Will look for designs I can buy in big sizes so they are a bit loose!

Thanks again everybody.

 

[LoopyLoo]

Hey Alwin,

I've forgotten if you're on meds, if you are then you can get an NHS prescription certificate which reduces the cost if you have to get alot of meds including sunscreen. It can be quarterly, 6 monthly or annual. We are lucky that the prescription charges in Scotland are coming down significantly.

My rheumy recommended Sunsense or Roc on prescription which are total sun block. I have also purchased sunblock clothing from sports or outdoor clothing stores in the UK but it can be pricey. I got a load when I was in the states which was half the price. You may be even cheaper ordering from the US online. I'm sure there is a sticky here somewhere about sun sensitive clothing.

I can't advise on the rashes but I do find that witch hazel gel helps loads with the itching.

So when are you coming to do my garden then? ansy:

Lots'a'luv, :hug:

Pam xxxx

 

[ALWIN]

Thanks Pam. I take Plaquenil, Aspirin, Betablocker (never remember its name), Voltarol, Omeprazole, Cocodamol. I paid an annual NHS prescription certificate fee of less than £100 if i remember correctly, so I must have saved a small fortune! That's why I was being tight by trying to get my sunblock on NHS, but she was having none of it! always worth a try.

The chap I sometimes go gardening with visits the states a lot to see his parents, so I will ask him to get me some long sleeved stuff next time he is out there. He used to work in IT too funnily enough!

Had forgotten all about good old witch hazel. I've got one in my garden though! When my aloe vera stuff and my tea tree runs out I'll try the witch hazel gel.

Gardens, eh? I cannot begin to tell you how much work i have on. Last week the friend I mentioned took me to help change the size of 2 foreplaces in a lady's house, so we have other types of work we can do in winter-time. So I learned how to make 1 fireplace higher and one lower, how to support them whilst knocking bits out, how to fit a concrete lintle for plastering over, and how to fit an oak one for decoration.

He left me alone to throw the plaster at the cracks before smothing it over and i have never been so panic striken. I was trying hard to aim correctly, but everytime i let loose with a throw the flipping stuff landed in all the wrong places. I was sweating with fear at one point cos i'd thrown it well and truly into the pile of the carpet. Managed to get it all out though before anybody noticed.

Anyway - back to the point ... if you'll do mine, (garden) I'll happliy return the favour!

You're gonna accept now and tell me you have 15 acres or something, aren't you? :stop:

 

[LoopyLoo]

Eh...why would your GP not prescribe sunblock for you? Every doc I've seen has said the same thing 'stay out the sun and cover up'. Me thinks you need to arm yourself with info and go get her!!!

My annual prescription fee is £38 (which I've used up 3 times over) and will thankfully reduce again in time. You are right that even with the meds you are on warrant the fee.

I use witch hazel for everything - spots, burns, rashes etc. I even use it for thrush and it works a treat......but sshh....don't tell anyone. :secret:

Don't worry - it's not that big a garden.......but we are looking for someone to tidy it up a little before we sell up. Coming to Scotland any time soon by chance.......:hehe:

 

[Sage Hen]

Hi Alwin,

Can you get Aveeno Oatmeal bath there? I hear, it is very good for hives and rashes in general.

I hope your feeling much better now...

Love,
Sandy

 

[greenhaggis]

That's very bad your GP won't give you sunblock on prescription! I have Pre-paid prescription and my GP even prescribes paracetamol (and thats so cheap just to buy), I must add I never asked for that one on prescription.

Mind you I have yet to ask for sunblock from GP - but am waiting to see a dermy so will probably try that route first!

I would see a different Gp at the surgery if that fails tell your Rhuemi by phone/letter they can tell your GP to prescribe sunblock!

Good luck!

Love Lesley!

 

[ALWIN]

DO YOU USE IT FOR THRUSH LOOPY?

Hey everybody - Loopy use it for thrush, you know - how about that! :rotfl:

Sorry - pathetic sense of humour. Childish, I suppose.

I wasn't planning on coming to Scotland, but if i did you would not be sorry! I know a couple of right good weeders who have just started up. I could bring them with me and watch them work whilst sizing up plants to take home with me. They would really like that a lot. :smile:

Sandy

I must say I have never heard of the Aveeen Oatmeal bath you mentioned, but you did remnid me about oatmeal and skin! David Bellamy used to recommend putting porridge oats in the foot out of a pair of tights and knotting it, then you dangle it under the tap when you are running your bath. It contains an enzyme that speeds up healing and is supposed to be very goood for eczema (no clue how to spell that owrd, by the way).

So i can at least give that a try - seems easy and is natural and all that. always have porridge in stock.

Thank you!

 

[ALWIN]

Hi Lesley,

I think I'll just get it from the chemists - she gave me 2 names of decent products - and others here have suggested a few too.

I would be very interested to hear what happens when you ask for it on prescription though - let me know!