I definitely think you are making a wise choice!
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My pain level can be quite high if I think I am well. It is difficult to describe. It burns, feels hot, sometimes itches. But it is not constant. I like to think that my pain level is less when I work out strenuously. I think maybe it increases the blood flow to the effected areas. Finding a caring physician is essential. On a couple of occasions the pain was so intolerable that I called the physicians emergency numbers. I was very lucky to have some caring dental, Oral Medicine, and Dermatologists who have been so helpful when the pain is too much to handle. Don’t give up and keep communicating with your care team. Ask them what you should be doing. If they cannot help as for a referral. I must admit I have not been trilled by the gynecologists help. One even told me I should have a hysterectomy. I asked for a second opinion. The second Dr said. I don’t know what this is…..but it is not cancer…and if you were my wife I would wait and see. (I was 44 the and I am 77 now. I believe it can be managed, but not cured! Ask your care providers for the help you need.
I am sorry you have been diagnosed with Lichen Scletosis.
I have had Lichen Planus and Sclerosis for over 35 years. It started in the
soft tissue of my mouth, I have had it Vaginally for almost as long. I now
have skin issues that leave large brown spots, mostly on my legs! I have
had many treatments but most effective was the systematic Prednisone but I
cannot tolerate that now!
I use topical Clobetasol Propionate Cream on my skin lesions, mouth
lesions, and external Vaginal Tissues, two weeks on/ two weeks off treating
up to 4 times a day. Off treatments I use once a day. It has managed the
pain most of the time.
Once a month require shots of small dose prednisone into the inside of my
cheeks. As a rope like lesion continues to be swollen and most painful
unless treated. Which can affect eating.
This disease has less medical interest because we are a small population
about 2% of the total has our autoimmune disease. Doctors and dentists who
have family members that have this Autoimmune Disease have been most
helpful to me. I was taken off of all dairy products 1 year ago (avoiding
all dairy and dairy protean) 99% of my skin lesions have stopped.
I take Hydroxichloquine and Celcept but the Celcept is causing me great
gastro issues so will likely no longer take that.
Most of the time I can tolerate the pain I go about my days. I exercise
strenuously 6 days a week. I vary my routine I don’t know if it helps my
disease but it does improve my attitude and zest for life.
I am 77 so take hope and courage that you can carry on. You will be able to
find help, and you will find caregivers who care!
Continue to search for Doctors that have more than a textbook knowledge of
It will get better!
I am so sorry for what your wife has gone through. My autoimmune disease Errosive Lichen Planus I have had is best treated in University hospital and specialists in those areas. I’m starting my 5th decade. I get better and then have flares. If your HMO cannot diagnose you’re wife’s problems and they appear very sever perhaps asking for a referral to A large medical teaching hospital will help. Most will require all her medical history. My very best wishes for a remission. I know how frustrating these autoimmune diseases are. I have good years and bad years and frustration continues, but their are medical people who care!
The Dermatologist has been the most helpful for me. The Gynecologist prescription was a topical hormone which was a net neutral. Since we only comprise 1% of the population it is not surprising that it takes us so long to find the physician that knows and cares about L S. My effective treatment is also Clobetazol Ointment.
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
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