Does anybody who has MS or APS suffer with an itchy and extremely tender scalp?
Mine has been ongoing for a long time. I have no redness, scabs etc and scratch so much I’m surprised I’m not drawing blood. It’s more painful near my crown before it spreads over my head & just touching my hair especially near my crown.
Hi, I have episodes of this, and it is more than likely related to the fact that I have a history of Psoriatic Arthropathy, this happens to me if I have an inflamed spine due to either a trigger such as somebody's sore throat or hormonal change or a severe infection elsewhere in my system somewhere. I sooth my scalp with coconut oil and also aloe vera gel. It is normally fairly short lived in myself.
If this is a new symptom, do go and see your GP, and also check whether you have introduced any new product into your bathroom, either shampoo or conditioner as this sometimes can be the culprit. Any decent GP will want to be ruling out Folliculitis which can caused by staph bacteria or fungi.
Mary F
As Apsnotfab says your post leaves open a lot of questions, it could relate to so many things, it's probably a case of ruling out rather than diagnoses? Which I'm sure you've tried, my first thought after that would be see a dermatologist.
Try not to scratch as this leads to a vicious circle.
I have areas of itching all over my body, this is from having sjogrens- rather than scratch I use a very cold flannel, which helps.
I’ll make an appointment with my GP. I use different products on my hair and I’m aware that I have to be careful not to put conditioner onto near my scalp.
My scalp feels so bruised and tender when I scratch it but never shows any sign of redness. It happens every day and it’s just so annoying. I’m not complaining as I know people here are suffering with much worse things than I am. Thank you for your replies as always
If you could find a Doctor who is knowledable of different sorts of autoimmun illnesses like APS (first of all of course) but also Sjögrens, RA, SLE, Thyroidea etc etc. They are like twins many of them and also very difficult to diagnose if we can not find a Specialist of autoimmun illnesses.
Thank you for your reply. I’m waiting for a MS nurse to return my call. If I have no joy I’ll attempt to make an appointment with a GP which will probably take 3 weeks! Maybe I’ll be referred to a dermatologist asap.
Hi there. I too suffer with a tender scalp, itching, and occasionally tuffs of hair will fall out. I have APS, psrosis, and a whole bunch of other auto immunity problems. (I have a sulfa sensitivity). I have eliminated the hygiene products that contain sodium Laurel sulfate or if it has " sulfites". I also will pour on my tender spots Witch Hazel. It doesn't mess up your hair at all. It helps my scalp heal and takes away the tenderness. I also wash my hair every day. I use Argan Oil Shampoo & conditioner from Amazon. This is the best my hair has ever looked. Good luck!
I think I’ll try what you’re doing, it sounds the easiest to me!
Thank you and everybody who has taken the time to reply, it means so much. X
Hi there
Yes I have APS and have the same thing. I was also getting hair loss. I found that cutting out foods that trigger the sore and itchy scalp worked for me as well as washing my hair everyday with baby shampoo. I found Sainsburys own brand the best. The food I needed to cut out was gluten and also caffeine. There are loads of alternatives out there. My Gastro Doctor told me he is seeing more and more people with food intolerances developing in later years. It might not work for you but worth a try. I tend to eat mostly fresh foods and no processed foods and all in all I finally have things under control and as a bonus my APS symptoms are much better. I am in my fifties and feel better now than years ago when I first had my clot and got diagnosed with APS. My Rheumatologist has been very interested in my progress and he tells me there are more and more papers and evidence coming out in his field which support the link from gut to auto immune for some people.
Hope that helps.
Kaz
I thought about using baby shampoo last night and I’m sure I have some here which we use on our grandaughter. I have to use conditioner though because of the bleach. I also use Pantene leave in detangling milk which I’ve used for ages and has Argan oil in it. I don’t think my bleached highlights have anything to do with it. Last time I’d left it so long before having my roots bleached, like 3 inches at least but the itching never stopped. Strangely enough it hasn’t itched today, maybe because it knows it’s getting washed tonight 🤷♀️
Hi again
The itching drives me mad, in fact if I don't get it under control it gets painful. The shampoo I mentioned leaves your hair quite soft but when I do use a conditioner I just avoid my scalp and work it through the ends. Getting the washing part under control is not enough for me I have to stick to the diet I mentioned. Out of interest did you eat differently today or yesterday as you say it has stopped ?
I wonder if hormones play any part of it as well or if it is auto immune or a food intolerence.
Just another health thing to sort but we are all used to that and get there in the end.
Kaz
I washed it twice tonight using L’Oreal - I forgot to use the baby shampoo. It was tender even while I was washing it. Used L’Oreal conditioner as it’s the only one that’s of any use but I still have to use the detangling milk. Today I ate 2 slices of toast and then my dinner tonight which was chicken, potatoes and vegetable rice. Spicy and nice but I don’t have a big appetite so only eat small portions. Yesterday I ate cornflakes with All Bran and lamb hotpot for dinner. I can’t contemplate being vegan unless I had a personal chef!
Maybe you could keep a food diary for a couple of weeks and see what you have eaten on the days it is worse. The NHS had to give me a nutrionist as I did not know how to cope at first but I am fine now with it all. My hubby actually pinches my food and often eats what I am having. It's not so bad. Do try that shampoo if you get to Sainsbury's. It's in an orange and white bottle.
Kaz x
Sorry I forgot to ask what conditioner you use
I use John Frieda Frizz Ease but only on the ends and not too much. I just read the reply from a couple of other members re the Warfarin and my gastro guy suggested that I try something else to thin my blood and I am awaiting a chat with the haematologist. I think there is something in the theory. I certainly have more hair loss from being on Warfarin.
I’m making a note of it on my phone. Thank you so much x
Good luck... I hope you feel better soon.
Thank you so much
I also have suffered from an intensely itchy scalp since commencing warfarin and I know of several others who have this too. I feel there must be a conection.
That’s interesting because although I don’t take warfarin I do take an anticoagulant. I’ll do a search on it. Thank you!
I have very short hair and found that stopping conditioner (of any brand) and washing hair every day cut down a lot of my itching. My hairdresser advised also to only use a very small amount of shampoo (only enough to cover a 5c piece (Aussie) a little over a centimetre across. It sometime itches a short while after this regime and then goes away. I used to have a very sore scalp and this seemed to provide a cheap and easy fix for me.
I’m pleased that’s helped you. My hair is so thick I’d never be able to wash it with such a small amount. I’m going to try the baby shampoo first and go from there. Thanks for replying
Mine is itchy just above my hair line at the top of my forehead. I've tried creams and dandruff shampoo but it's still itchy. It's not tender, though.
I hope it doesn’t spread all over for you. Even my ears sometimes get itchy and it’s an itch that can’t be ignored.
I have aps and SLE lupus and my scalp is often very itchy. Cutting out gluten helps for me
Somebody else mentioned gluten. Hope it continues to help you.
I have suffered from this for years, my only saving grace is T gel shampoo, as it it stops the itching and helps the scalp . I'm currently having a breakout at the moment and it has affected my face, also my glands in the back of my neck and causing the bones above them to swell as well. So its E45, painkillers hydrocortisone but it goes
I’m so sorry to hear you’re suffering so much at the moment. Let’s hope you’ll soon be feeling better. I’ll try T gel shampoo but I must say my scalp is so much better since I changed my hair colour. It may be a coincidence, I don’t know. I’m also using a different conditioner on my hair which I’ll be lost without.
Wishing you well 💕
i just hope you get some relief
Very unique APS situation.
Looking for some help, feeling very lonely 
Very different form of migraine?
So very sorry haven't updated
Getting very anxious now.
