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Posts (9)

Wed, Jun 19 3:07pm · Lichen planus in Autoimmune Diseases

I absolutely agree that getting my teeth cleaned quarterly it helps. I also a brush, floss, and rinse and use the little picks…it helps too. With my mouth sores I cannot tolerate any mint. Sometimes use children’s toothpaste without mint. My mother and sister have been biopsied and have oral LP too. Theirs is/was not active. I have had to have prednisone shots on the inside of each cheek when it affects my ability to eat anything. 35 years fighting the disease. It is terrified to have this format. I am going to try magic mouthwash? Thank you! Maryz

Wed, Jun 19 2:17pm · Lichen planus in Autoimmune Diseases

Sorry to hear about your fight with LP is a fight. I have had LP for 30+ years. It has been quite a ride with not change in the strategy for treatment. I find that I must work out regularly at least 5 times a week. I think it helps with stress and better blood flow for healing. I will no longer take and aural Prednisone. I use only the topical cortisone in gel or ointment form. In March I was told to eliminate all dairy ( it is the protein in the dairy from cow, goat, and sheep that causes the problem for me. All oozy, crusty burning caused in the bumps on my body. Even some improvement in my mouth. Because it is an autoimmune disease, it is so hard to find what our personal triggers are that make our body react. I also only use non soap to bath and wash with so that I don’t strip my body of the natural oils.It has all helped. My mouth is the challenge with Errosive LP. A painful proposition, but keep a close eye on it as it can develop into cancer. My best luck has been with Teaching Hospitals in the Oral Medicine or stomatology departments, or with Dermatology Docs. Best of luck. maryz

Tue, May 21 11:52pm · Erosive oral lichen planus in Autoimmune Diseases

Oh, my I am very sorry to learn that. Please take good care of yourself too! Maryz

Tue, May 21 10:40pm · Erosive oral lichen planus in Autoimmune Diseases

It is for sure a very challenging and sometimes when we have the pain of ELP it brings that tearful frustration. It seems to be considered a hysterical women’s disease. There was an article published in the New York Times this month. Here is the link. https://www.nytimes.com/2019/05/12/well/live/a-little-known-skin-disease-that-can-disrupt-peoples-sex-lives.html. Information in this article could well be what ended my marriage. These rare auto immune problems seem to be a mystery even to the medical community. At least Mayo provides a forum to learn what may work. If it worked for others! If the link I provided is blocked just search for the New York Times article from 5/12/18 an article by Jane E Brody. Heading is A Little-known Skin Disease That Can Disrupt People’s Sex Lives. It is a provocative but true statement but so much more. People have been responding with their medical experiences. Good luck. maryz

Thu, May 2 11:21am · Turmeric in Autoimmune Diseases

I have been on a large dose of Tumeric with Bioprine since March. I take (always with meals) and a large amount of water,4000 mg three times a day. Except for spotty flares I am currently pain and leasion Free. I have also eliminated all dairy, checking labels for ANY dairy byproducts. No cow, sheep, or goat milk. Read all labels carefully. Eating out can be challenging but I always ask the server to ask the chef. Most have been extremely helpful. My goal: pain, prednisone, and lesion free. Doing Much better following these practices! Good luck. Good Luck it is a painful and frustrating autoimmune disease. Maryz

Wed, Apr 24 9:35am · Turmeric in Autoimmune Diseases

I was part of an NIH published study at UCSF many years ago. The study is published. I now have a flair of my Lichen Planus of mouth, nails, and other areas. I have been taking 8000 mg total with BioPerine of Tumeric taken with meals three times a day since March. It is a challenge but worth it to help avoid Prednisone systemically. I still require some prednisone topically but hope to avoid the problems of systemic prednisone.

Fri, Apr 5 10:21am · Oral lichen Planus in Autoimmune Diseases

Dear Lovebug61. I know the pain and frustration that come with OLP after many years. Because we are only 1% of the population it is a rare medical person who has interest in this disease. After 30+ year the severity ebbs and flows. Be sure that you see someone regularly/quarterly who can track your LP. After a particularly bad 6 months I have trays made for my teeth and use clobetazol 5% gel 3times a day until the inflammation and lesions are reduced. This was after Prednisone injections in my cheeks. I take 8000mg total of Tumeric with bioprine divided 3times a day with food. I have been told to eliminate ALL dairy as some patients seem to be allergic to the milk proteins…so I have been very diligent about reading labels. I am not yet sure if the diet change will help the LP but the Exema that I had developed about 3 years ago has disappeared and did so after about 5 days. My greatest success has been when we lived near Medical Schools and I was seen by Dr’s in the Oral Med or Stomotology clinics. They reviewed me quarterly, watched and tested for oral cancer. And tried various protocols etc to help. The pain at night was helped by using Xylimelts w/o mint, by OraCoat, During the day using small amount of Viscous Lidocaine. I also exercise daily to get my heart rate up as I believe that also increases the blood flow in my mouth which helps my healing. I hope some of this helps with your symptoms.

Sat, Mar 30 9:38am · Erosive oral lichen planus in Autoimmune Diseases

Hello @gerrmany2 I have had Lichen Planus since 1982 (37 years) discovered when a biopsy was done at the Oral Medical Stomatology Department at UCSF in San Francisco. I have been on Prednisone systemically off and on for most of my life since that date. With the advent of Topical steroid Gels I have been able to treat the lesions. I now have mouth pieces that I can put the gel in and wear for 20-30 minutes twice a day. I cannot tolerate toothpaste, floss, or food with mint, chili spices, or cinnamon or alcohol. Recently after a particularly difficult bout of lesions all over my mouth, I had to have shots of cortisone on either side of my cheeks, was told to take Tumeric with Bioprin 8000mg divided three times a day with food. I also have had vaginal and fingernail OLP. There is no cure but the hope is to keep the symptoms at bay and to see an Oral Medicin Dr. and a dermotologist that has some interest and knowledge of this autoimmune disease. I had to travel from Arizona to San Francisco to see an Oral Medicine Dr who was a resident at UCSF where I was diagnosed who told me to avoid ALL Dairy products including any protein bi-product contained in canned or prepared foods. Eliminating all Dairy has provided some relief of the fingernail LP but it is too early to tell wheather oral or vaginal LP respond to this protocol. The key for me is to stay ahead of the pain, be sure you see an Oral Medical specialist. It has been my good fortune to have lived in two cities where there has been and Oral medicine clinic affilatied with a Medical School with a Stomatology clinic who watch me carefully so that early signs of cancer can be found. Where I live now in Arizona, I too am challenged as it does not seem to be anyone who to knows or treats OLP. Mayo Clinic in Rochester it appears does have expertise and interest, in OLP but for me it is too far to go. It is always a challenge but you are your best advocate. Since OLP patients are only 1% of the population, it seems that my best medical care has been from physicians who have experience with a family member so they have a personal interest in helping. Good luck, you can live a long life living mostly pain free, but you have to be your own advocate. Best of Luck Maryz