Found out in Oct and dryness is getting worse. My eyes are the worst, now my hair is falling out. I haven’t read much about hair, but my hairdresser said my scape is extremely dry. My skin is so dry and I am wrinkling like an 80 year old.
I am taking meds for dry mouth, but it is not helping my eyes. I tried the tear duck plugs, the small ones feel out and the bigger ones were so uncomfortable.
I was wearing my hair with a combover to try to cover my very thin hair on the top of my head, it quit working. It doesn’t work for men and it certainly doesn’t work for women.
It sounds like you’re having a really rough time with it.
I have my tear ducts all plugged. It’s worked really well for me, but I would be beside myself if it didn’t work. Some people wind up getting their tear ducts cauterized to permanently close the tear ducts. You might want to bring up this idea to your eye doctor. It’s funny, I found that Evoxac made a small difference for my eyes. Not huge, but a slight difference. More important were the eyedrops, tear duct plugs (top and bottom), night time ointment and warm compresses.
You can also go to a dermatologist who specializes in hair. There are some supplements that are frequently recommended, including folic acid and biotene. But in addition, there are topical treatments such as Rogaine that you can ask your doctor about. Some women also opt to cut their hair short. Having longer hair weights it down, so that the thin spots are more visible. Keeping your hair short will help keep it fluffy. When I was having trouble with a specific spot losing hair I wore headbands and scarves to cover it up. It was, of course, far more noticeable to me than to others.
Thanks so much for all the advice. What is Evoxac? I will make an
appointment with my othathmologiat tomorrow. Living with this constant
burning I awful.
I have been using Rogaine for a few months, but not seeing any
improvement. I have a big head and big face, especially for my body, a
high forehead with very thin hair with no body so it lies flat on my head.
I have tried short hair a few times in my life. Looking back at my
pictures, I am 69, those are the worst hair styles for me. I will
certainly try the vitamins. I want to go the natural way than put any more
drugs in my body.
Thanks again for taking the time to give me some advice. I desperately
needed to hear from someone. I have been letting this get me down.
Dealing with hair loss can be devastating for a woman. I get it.
You asked about Evoxac. It’s a medication that’s used to increase saliva, for extreme dry mouth. There are two meds that do this so far as I’m aware; Evoxac and Pilocarpine. Some people can’t tolerate one but do fine on the other.
When you see the eye doctor make sure to ask about what else you can be doing at home, including warm compresses and night time eye ointment. They have both been really helpful to me, and I know that they’ve helped others as well.
Hi Rita,
sorry that you’re having all this to deal with… as Stoney says it’s worth trying the night gel and warm compresses- they’ve helped me quite a bit.
The hair loss problem has been discussed quite a bit here- if you click on the magnifying glass icon top right of the page and type hair loss into the box, it’ll come up with quite a few past discussions- there might be some tips to help you, and at least you’ll feel less alone.
Hi, Rita! Welcome aboard!!! I understand you must feel frustrated, but you can find a lot of suggestions on this heavenly sent group support. We are all going through so much! Fortunately, we are here to help one another.
In regards to your dryness I have a few suggestions for you. After trying many products I have stuck with the following: Nivea cream moisture moisturizing body wash, Cerave for my face (and lips) and Curel ultra healing for hands/ body. For my dry hair and scalp I use African Pride Olive miracle Live in conditioner (it’s about $3.00 for 15 oz and has worked wonders on my scalp and hair).
Hang in there!!! Hope my suggestions help you out. Be brave! Take care.
Thank you so much. My eyes burn all the time and my vision is blurred. I
heard from another member who said she didn’t use eye drops, so I tried
it. My eyes still burn but not any worse than when I am constantly using
drops.
It is great to here from someone that understands.
Thanks
RitaT, I’m a newby as well, and completely ignorant when it comes to social media. You might also ask your eye doctor about Restasis. I’ve been on it for five months now and it is now making quite a difference. I still use liquid tears, Soothe XP, and eye scrubs during the day, and Refresh Gel at night. Both my eye doctor and optomitrist both told me to ignore the FDA mandated instruction on Restasis to only use the little eye droppers for a single application. By putting the ‘cap’ back on after each use, I have been able to turn what was suppose to be a three months supply into just over a years supply. After getting prior approval from my insurance, the three months supply cost me $260, which works out to about 70 cents a day because it should last me more than a year. The relief that I am now getting is well worth the expense. Just remember that it will probably take a couple months before you notice a difference.
Wish I had some helpful words on the hair loose, but I lost most of mine before SS ever came along! My skin is getting somewhat scary, so still trying different moisturizers - any suggestions?
Hang in there girl!
MarkMark
Hey Rita!
I am new too. To the site. I have had SS for about 10 years or more. I use Restasis and over the counter artificial tears. Be sure to get preservative free. Another tip is to use a cool mist humidifier. It helps with dry nose and air passages. Also sugar free things you can suck on to stimulate saliva is a real help. I am fond of Werther’s sugar free caramel candies.
Hi Rita. Welcome to the site.
OK…I use Nivea in-shower lotion that works really well for me. The soft skin feeling actually lasts for a long time. Aquaphor for the lips (though blistex just put out a serum that is pretty wonderful too.
I have been taking flaxseed oil, B12 and Biotin for awhile now (at the doctor’s suggestion) and the secondary benefit is that my hair has been doing much better. I still go through periods of heavy shedding but the “so thin you can see through it” look hasn’t happened in a long time.
I intend to go down fighting. LOL. Even my hairdresser keeps commenting that my hair is looking very healthy. Oh, and I use Nexus shampoo and conditioner, the Sauve’s moroccan oil on it afterwards. Big difference in softness.
I have the thinning hair problem too. I have not found a solution that I can afford. I have looked into wigs and hairpieces. The ones that look good are incredibly expensive. I just style it as best can for now. One of the things I have found to use is this hair brush Wet Brush. It detangles without pulling out your hair. I think I own about three of them now. Two regular size one and a purse size one .
I bought a hairpiece. It looks like my hair and not heavy. Thank goodness
I had the money to pay for it, well worth it, because my hair is
continually getting thinner.
Hi, fellows! Collagen and Biotin are good for thinning hair. It helped me. Also, get your thyroids checked, SJS affects it and hormonal imbalance could produce hair loss.
Don’t get stressed out over thinning hair; it will only make the situation worse.
Hang in there!!!
