Does anyone have any tips for widespread itching,... - LUPUS UK

LUPUS UK

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Does anyone have any tips for widespread itching, especially scalp?

25 Replies

I know I shouldn't scratch, but I'm all for clawing my skin red raw. I'm seeing the Rheumy tomorrow so it's probably no bad thing my rashes are bad since it's the first time they will have met me, but I still have to make it through the next 24 hours...!

The pharmacist couldn't recommend anything so I'm hoping someone might have some home remedy tips to share? I have a rash with hair loss all over my scalp with blisters that burst and scar. Then the skin of my hairline, the sides and back of my neck and behind my ears are covered with red and flesh coloured itchy bumps but the skin is not broken but the nerves prickle and the itching is driving me insane! I'm having to grit my teeth and sit on my hands :( does anyone have any tips please? Xx

25 Replies
Bonnie39 profile image
Bonnie39

Sounds almost like eczema? But I have foliclitis, and I think it may be lupus linked. Try taking an antihistamine? My mum uses tea tree oil shampoo (cheap in Sainsbury's) to treat it.

Shann07 profile image
Shann07

Poor you that sounds horrendous! I think its def a lupus rash thing. I get the wee itchy bumps and they drive me crazy, especially when i used to get a colour on my hair there was one time my scalp felt like it went on fire i think the skin must have been broken oh the pain! Now i just get highlights which are not in direct contact with my scalp. I use T-gel therapeutic shampoo it helps soothe the scalp and it does make a difference, it calms and soothes, but I've never mentioned it to my rheummy so i am curious to know what yours will advise. Sorry i cant give more advice i hope you get some relief soon.

vonda profile image
vonda in reply to Shann07

yes I don't know about the hair dying because I lost my hair. lol Jus b careful tho hair dyes have a lot of chemicals. I think you should ask your rumey. Don't hurt to ask...smile

Wendy39 profile image
Wendy39

My scalp was like this before I was diagnosed but the hydroxy worked quite quickly on my scalp, thankfully, although I still get the odd sore, just taking longer with the other symptoms. I have started using a Body Shop shampoo and conditioner as I thought it would be kinder on my scalp (no parabens etc) and people have recommended Holland and Barrett manuka honey hair products. Do you have any steroid creams? My rheumy prescribed me Dermovate which has helped too. I'm sorry that I can't help more but like you said at least they will see you with your rash and will know how bad it gets. Let's hope they can help. I hope you are feeling better soon.

vonda profile image
vonda in reply to Wendy39

I believe you should use trialcinilone its a steroid cream I kno I missed spelled it but anyways and colesbestol for your scalp. Ask your doctor about and look it up. goodluck

vonda profile image
vonda

for my scalp.for my itching my doc. subscribed hydroxyzine..It's for itchindg and I've lost my hair as well he gave me triacimilone hope I spelled it rite and colebestol

luvmelon profile image
luvmelon in reply to vonda

Triamcinolone

vonda profile image
vonda

For one you could e flaring up, but about the itching I go threw that Im starting to get to know the lupus like at end of month I start itching real bad are itching I know what time it is..I have some itching relief if you care to hear. First time up here so ...I just gotta stay focus of people needing my help as well as I need theirs

in reply to vonda

Thanks Vonda, that's really helpful. I'm still going through the diagnosis process at the moment, currently lupus-like diagnosed but seeing specialist tomorrow in the hope they look at symptoms and history as well as my bloods which were inconclusive. Until then I'm going to have to rely on shampoos and skin creams as I doubt they'll prescribe anything, although I can hope x

Thanks for the suggestions, I think maybe I'll look at an organic, fragrance free shampoo and hope that Rheumy/biopsy shows something up xx

vonda profile image
vonda

If you want to try the herb way feel free to ask me about it...my ma always take herb so I know a little but that also....SMILE LUPUS DOES NOT CONTROL US!

NickyQ profile image
NickyQ

I so know how you feel i've just been through the exact same thing. I've haf SLE for 13 years but never got skin problem until

last year.Try and go to a dermatolagist too if you can i had to keep asking ( you know what its like) mine came about after colouring it, the sun and i was having a flare up. I tried acv, manuka, banana,egg etc but only would soothe when on thats all. normal shampoo just aggravates it badly. It spread to my face, neck and arms so get nagging as it needs controling. 2 weeks ago i went on Dermovate for skin almost instant relief! Good news too is my face is clearing up. So don't lose hope ma dear! Clarelux mouse for my head. I have upped my steroids too. I tried 3-4 other creams and they made things more itchy so be careful what doc gives you. I can dig them out if you need to know. Good luck x

Belee profile image
Belee

Before I lost my hair I used body shop ginger anti-dandruff shampoo which was recommended to me by a friend who suffered with psoriasis. I didn't have dandruff, just a constant itching. It was fab and really helped the scalp itching. Sadly I now have lost my hair but because I still get some itching I still wash my head with the shampoo!! Your rheumy should refer you to a dermatologist who may offer you a mousse ( I've forgotten the name) to help the itching. This didn't really help me but I know for some it's proven helpful.

Good luck and I hope you find some relief soon xxx

in reply to Belee

Thanks loads, I'm debating what to do next. Shaving my entire head perhaps? X

in reply to

Sorry, that came across as really insensitive to those of you who have lost your hair already, I didn't mean to sound so glib. I'd hate to lose my hair, but it really is driving me to the point where I can't stand my hair touching my skin around my face and neck, not even one strand, and my scalp is red raw. I wear my hear in a bun on top of my head but I genuinely wonder if getting rid of it all would ease my discomfort, since I can't wear it down and in a style anyway. Sorry if I upset anyone xxx

I developed an itchy and quite painful rash on my forehead and round my hairline after I had been on azathiprine for about 6 months (no idea if the two were related). The rheumatologist grabbed a dermatologist at the hospital, who told him to prescribe Pimecrolimus. I put the cream on twice a day, and it works. The only problem is, when I stop using it the rash comes back. Ask your doctor if this might work for youtoo perhaps?

Good luck!

MrsNewfy profile image
MrsNewfy

Make sure that all your hair & skin products are free from SLS & MI/MIT. SLS is usually just drying & irritating but MI/MIT has been found to cause the reaction you describe & can cause eye irritations also.

Herb profile image
Herb

I know kidney problems can cause itching, as can many skin infections due to immunosuppressants.

I am wondering how you got on at the rheumatlogy? They would test the urine for kidney problems.

Personally my skin was really bad when I was on prednisolone. Its a bit better now. I also got a beneficial side effect from gabapentin. It was prescribed for neuropathic pain but helped the itching immensely.

Also I really improved when I stopped bathing and showering so much.

I had dermatitis diagnosed by GP, flaky, itchy, red, and when I went to 1 or 2 showers only per week my skin improved a lot. The other days I just wash the important bits in a basin. I use a natural bar soap from Suma.

If possible can you wear clothes which are loose fitting and breathable. This will help.

Yes, the scalp is the worst. I have tried all the special shampoos, to no avail. It does bleed sometimes. I have given up trying to change it.

in reply to Herb

I didn't make an awful lot of progress with the Rheumy I'm afraid. She thought might scalp looked like 'inflamed acne' and it turned out that the correct blood tests hadn't been don't by the previous hospital! I'm waiting for the results of the batch she ordered now, and because she didn't look at my skin I went back to my GP. He reassessed it and said he thought it could be folliculitis and has prescribed a steroid lotion and some antibiotics. The itching has eased but the rash is still there and spreading onto my face and neck!! So now I'm waiting for a dermatology referral to see if I can make progress that way....

Jake1001 profile image
Jake1001

Have you prescribed dermovate , it does help I have very bad scalp problems and hair loss and the dermovate calms it down I also use nioxon 1

in reply to Jake1001

Hi Jake, I saw my GP again yesterday as after 2 weeks of strong antibiotics and a steroid scalp application the rash is worse not better. I now have what looks and feels like burns (scaly red surface, dry and searing hot pain) all around my neck, throat and chest in addition to infected papules which scar badly, and burns, covering my scalp and face. He didn't know what to do, suggested it might be an allergic reaction to medication (I've been on all my meds for 5 years so no changes). I'm seeing a dermatologist on Wednesday and am hoping for some answers. I know it's vain to think beyond health, but this has caused some serious scarring because of which I'm already too self conscious to leave the house. I will ask the dermatologist about the dermovate x

nutritionfocused profile image
nutritionfocused

I had similar issues, eliminate gluten and gluten hair products see if this resolves for you. It helped immensely and once I realized that distilled vinegar products also contributed to my itchy scalp on the occasions that I would eat it and eliminated that I am now itch free. My itchy scalp and patches on scalp were so bad that it us such a huge relief to have no itch now.

nutritionfocused profile image
nutritionfocused

Have you tried eliminating gluten?

Food, hair products etc?

luvmelon profile image
luvmelon

I have had lupus since 2004. My symptoms wax and wane but currently have noticed I'm becoming allergic to more things. I have that same feeling you are describing when coming in contact with foods and hair products. Of all things, I've discovered I'm allergic to chocolate. And some other choice foods. Try paying attention to the products you use and what you've eaten when symptoms worsen.

Good luck.

Cassic profile image
Cassic

Low carb diet

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