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Sjogrens Syndrome with extremely dry itchy scalp and hair is falling out.

Posted , 9 users are following.

jj101010
jj101010

Is there any shampoo and conditioner that anyone uses that helps with these symptoms? I am having a hard time getting into the dr and need help now. My hair seems to be falling out at an alarming rate and my scalp is super dry, itchy and burns. I have been trying to do some research and it seems that chemicals like sulfate may be the problem. Looking at the ingredients it is hard to tell what is going to help me. 

0 likes, 11 replies

11 Replies

  • aitarg35939
    aitarg35939 jj101010

    Posted

    You might try asking at a health food store. Back when I used to have itchy scalpI used head & shoulders, but only when things were bad. Sometimes one needs to change shampoos in order to stop the itching & burning regardless of ss. And olive oil or mayo hair treatment might help too.

    A lot of shampoo for color treated hair now specifies that it's sulfate free.

    • jj101010
      jj101010 aitarg35939

      Posted

      Thanks! That is a good idea. I will go to a health food store. 
  • jacqueline00180
    jacqueline00180 jj101010

    Posted

    Hi jj I have the same problem I found Nizoral which has ketoconazole in and neutrogena T gell helped my scalp i didn't know what to do at one point it kept me awake where I scratched it sore I haven't had it since using these products and I only use T Gell  now as for the hair falling out I haven't found a cure or a reason why I have the dietician tue I will discuss my hair loss and share if she comes up with anything I have had hair loss since developed a lactose intolerance . I hope this helps it did sting when I first used but only the first couple times then I found it soothing I think you can get the first one on prescription I got it in boots in the uk 6.00 a small bottle but you only need little bit I hope it helps I know we are all different  I hope you get some  relief x
  • jj101010
    jj101010

    Posted

    Also, do you use a concealor that works well for you? I have extremely dry eye lids and dark circles around my eyes. I think it might be an irritation from my make up. I have tried a hypoallergenic concealor from the grocery store but it isn't helping. I have found a really good hypoallergenic mascara that helps a little. What about body wash? I use a hypoallergenic body wash but my skin is still super dry. Does anyone use a body wash that they like? I am so glad that I found this site. I feel so alone with so many unanswered questions because I can't get into the dr right now. All they have told me the last time I went was that I had ss.
    • jacqueline00180
      jacqueline00180 jj101010

      Posted

      Hi jj I have to use oilatum shower gell you can only get it on prescription you can get other oilatum products in boots it may be worth a try till you can get an app you have to ask for the oilatum shower gell though for me it's great as for make up i shop with qvc because you can trial it for 30 days and get your money back if it doesn't work also have you tried Almay products they are for people with sensitive skin yes it's frustrates me when they say you have ss but you  still need help to get the best products to help with syndrome hope this helps xx
    • aitarg35939
      aitarg35939 jj101010

      Posted

      Hi JJ

      The first rule of bathing/showering for dry or sensitive or fragile skin ONLY use just-warm water, never hot water and never, ever steaming water.

      Rule #2: don't scrub or scruffy your skin while bathing. Silk wash mitts/pads are the gentlest I found until something new I got recently @ bed bath etc. It's got "straight" fibers and logs like a shiny piece of shaggy material. (Will buy more to last the rest of my life lol)

      Rule #3: pat or dab your skin to dry it, do NOT buff with the towel

      All these were taught me by a dermatologist 30 years ago. He also had me scouring the land for oilatum soap - no gels or washes back then. I think there was also a soap called basis - equally hard to find. If you shop online (I don't) they may both be easier to find, and another kind person has given one place.

      I really liked Method white tea or green tea wash, it was a very creamy wash without most of the bad things jam-packed into most American products. Last time I needed some I had to buy something else, still in method- vanilla creme.

      I have used some of the dove body washes but it's been a very long time. If you're sensitive to scent don't go near caress washes, they have that nasty dangerous chemical which makes the scent last a long time.

      Goat milk soaps work very well for me. I'm especially partial to what used to be a very cheap Canadian brand, campus in unscented. It's the only thing I keep at sinks for hand washing. (I've found small-batch Texas goat milk soaps at fairs and loved a couple of them but gave up on this route as it's heartbreaking when families change or altogether drop products or, even worse, go out of business.)

      As long as y'all are talking about American makeup brands, physician's formula is also hypoallergenic. There used to be an eye care line called aziza, and I found their stuff less irritating than almay. Perhaps they exist online.

      Something else about bathing: water, especially hot water, that has come through PVC pie and see far more drying to my skin than water that's come through metal pipes on my skin. Don't know if other countries use PVC pipes the way we do now.

      Hope some of this helps.

  • gretchen37301
    gretchen37301 jj101010

    Posted

    I've had the same problem.  Yes, you could get a prescription for ketoconazole.  Clobetasol solution may also help.  As far as hair falling out, that will stop when it wants to-nothing you can do to stop it.  You could try plaquenil if you've not already tried that, although it didn't help me for that particular symptom.  My hair fell out for 2 1/2 years and then just stopped.  It hasn't grown back to normal but the burning and itching subsided.  I think the cause is a low level of inflammation cause by autoimmune disease that disrupts the homeostasis of your body, causing your hair to shed.  I've been to top dermatologists and rheumatologists and gotten biopsies, etc. and that's probably the best answer I've received.  Oh, I tried hundreds of shampoos but nothing really worked.  Clobetasol and antibiotics were the best.  Best of Luck!

  • rj31382
    rj31382 jj101010

    Posted

    Have you been checked for Sjogrens Syndrome?
  • rj31382
    rj31382 jj101010

    Posted

    Hi

     Add biotin 10,000 units per tablet available on Amazon  to decrease hair loss

    See dermatology to exclude infectious cause which requiring antibiotics orally

      With sjogrens,  scalp itchy from inflammation. You can try over the counter antihistamine such as Allegra, Zyrtec, or Claritin. All are with out decongestant  which can make the itching worse because I'm trying to scalp. The dermatologist will likely order an oil that you massage into you hair for relief of scalp dryness, the follow with 1% hydroxycortizone cream  which is over the counter.  Use minimal amount.  until you can get to a dermatologist there are several Oils oil's you can try 

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