Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
What finally worked for me was pure organic Shea butter- but it has to be just pure 100% Shea butter, no other ingredients - no preservatives, additives, or fragrance. It is a thick, solid paste that softens as you rub it in. It smells nice - sort of a mild coconut smell. At first I was putting it on many times a day. Always after a bath and before bed. It took a while, but now I only use it maybe once a day. My cuticles are perfect and I have nails a bit longer than my fingertips, that rarely split or peel. A 7oz. jar has lasted for ages. For me, it really has been a miracle cure.
I just got some Argan oil - sometimes called Moroccan oil, to try on my long, curly, dry hair, and it has been great for my nails, too. Like shea butter, it comes from a nut. You don't need to get the crazy expensive brand in the fancy light blue box. I found 100% pure, certified organic, cold pressed argan oil, from Morocco, for about $8, on amazon. It comes in a little dropper bottle. Two drops is plenty for fingers. It smells slightly nutty.
Good luck! I hope this helps you. Oh, and avoid things like hand sanitizers and harsh hand soap, like in public restrooms. Those will totally destroy my nails. I stopped using any soaps or shampoos that contain sulphates. I keep a little travel-size bottle of a vegetable oil based soap in my purse. And I put some Shea butter in a tiny plastic pill box, for my purse, too.
The Shea butter was from Whole Foods - I bought the cheapest organic one, with no other added ingredients. I seriously don't recommend using any lotion because it will dry out your hands even more. I have Raynaud's, so I hate cold water like a vampire hates sunlight. And I'm a serious knitter, so I totally get how textiles can be killer on your hands.
I finally quit using nail polish on my fingers. It seemed to make the top nail layer peel off with the polish, especially after getting my hands wet, like after a shower. Then my nails would be even weaker. (Even the $20 Nailtiques, for weak, peeling nails did this to me.) My toenails, however, are much stronger, and painted a fabulous turquoise, today! I make the pedi last as long as possible because the remover is so drying. Since I am on a whopping load of immunosuppressants, I always do my own nails... I'm terrified of getting fungus or something at the salon.
Pconville - I have spondyloarthropathy, and you are right, this sucky nail stuff is part of the whole autoimmune arthritis disease. Poor thing, yours sounds really painful. Have you ever tried those Bucky buckwheat- filled pillows, that you heat in the microwave. It makes a moist heat that feels so good on achy joints. Also great for warming frozen Raynaud's feet, SI joint back pain, shoulders, cramps. Seriously, I own three of their Body Bags and use them every day.
(If you get on their web site mailing list, they have sales and free shipping offers pretty often)
Angellady - My rheumo noticed ridges on my nails and said they can be an indication of psoriasis. He referred me to a dermatologist, who should be able to diagnose and treat it. (oops, still need to do that.) The ridges can also indicate psoriatic arthritis, which is probably what I have, but we are calling it spondyloarthropathy, which is a more general term - and the treatment is the same, anyway. My nails got a bit stronger when I started Humera. Now I'm on Simponi and the nails are still doing well.
This is my first day on this site. Sorry to be so chatty and go on so much. It's been a tough week and this is has been a really great distraction from just stewing in it! Thanks for being patient with me...
i have raynauds also ....i have the hot booties that you put in the micro HEAVEN!
i also have cvid (bubble boy).... sjogren's is secondary ...with the cvid it comes with its own flu like feelings daily and i have had it since childhhood....
instead of heating pads i use heated throws...heated mattress covers, heated blankets and the micro versions too....
the cracking of the nail beds has gone on for years...just another great symptom to go along with the others!
Thanks for excusing my chattiness. My ten year old daughter was diagnosed with serious scoliosis, this week. She will have to wear a hard plastic brace, 23 hours a day, for the next 3 years. It's a lot to process. I got on this site to look into scoliosis, but found I'm not ready to go there yet. For now, I'd rather distract myself by sharing my 25+ years of problem solving, living with multiple autoimmune diseases. And I'm getting great ideas from you lovely people, too.
Back to shea butter: Now Solutions Shea Butter is what I use.
http://www.naturalhealthyconcepts.com/shea-butter-N7-p-now.html
This site sells it for less than $8 an doesn't charge shipping. This was the best deal I could find for you. (I was reluctant to be specific about naming products and sites, because I wasn't sure it was allowed on this site. I am not associated with any product I've mentioned.)
Ok, Jewl, hang on for a little tough love! ;) I am going to keep bugging you about not using lotions. They have additives that will actually dry your skin more. Two common examples: water to thin it out and alcohol to make it seem to absorb. When those evaporate, it dries out your skin. Pure oils will not evaporate, and will seal in your natural moisture.
I really encourage you to try the Shea butter and keep putting it on several times a day and always after your hands get wet. I promise you will see some difference in a week. It takes a while for your new, moisture-protected, undamaged skin to grow in and replace the cracked, damaged skin. I said it was a miracle, but it takes some time and dedication at first. I really love Pconville's idea about the cotton gloves, too.
I also keep a bottle of sweet almond oil in the shower. Just before I dry off, I rub it onto my wet skin. A little goes a long way because your skin is still wet. It doesn't seem to stain my white towels and has only the slightest sweet warm scent.
Because of my sjgren's, if I don't keep my skin moisturized, it can get really scaly, dry, and even painful. The skin on my back sometimes feels like a bad sunburn and just the movement of my shirt can be painful.
My eye doctor also put me on fish oil. It seems to help a lot. I rarely use drops any more. I also use biotin.
I HAVE to use Miralax EVERY morning, mixed into my hot tea, (stirred well!) because my meds constipate me so badly. Nothing natural I could find made a dent in my constipation. I take plaquanil, too, but I suspect my pain meds and sjgren's are the true culprit for me. From what I understand, Miralax is not a laxative, stimulant, or addictive. It just adds moisture to your stool, so it passes easier. I was totally against it and afraid to try it at first. Until one day, I was doubled over in pain, rushed to the hospital, and got an X-ray that showed my intestines were completely impacted solid. Miralax is my friend now. You may only need a half dose a day to get you moving. Add more if it isn't working and If you get too loose, cut back. Drink a whole glass of water after you take it.
I hope this helps. Constipation is miserable. Oh, and the generic, store brand Miralax knock-offs have the same ingredients and cost much less.
I make breakfast smoothies with fresh or fresh frozen fruit I freeze while stuff is in season and add it to a yogurt that has probiotic in it. I like buying the big containers and scooping out what I need. Dannon classic is good and its gluten free.(I am gluten intolerant)