Showing posts with label Lupus awareness 25. Show all posts
Showing posts with label Lupus awareness 25. Show all posts

Monday, May 26, 2025

Lupus, and radish.

 Hi Everyone!

Another thing that people with lupus have to contend with are oral and nasal ulcers. 

Tom, from Backroads Traveller left a comment reading, "lupus is insidious." 
I couldn't describe it better. 

  I'm not going to show photos. This part of the disease is quite graphic. I personally don't get them very often and not bad at all. As soon as I feel something happening in my mouth I start rinsing with hydrogen peroxide and water. 
(I did talk to my dentist about this) 
For me this works.
However, 45% of lupus people will suffer from sores and ulcers with a flare.
 
There is a prescription.

 Doctors prescribe Magic Mouthwash. 
This has an antihistamine, antifungal, Lidocaine, Hydrocortisone, Tetracycline, and Maalox or Mylanta. The last ingredient helps the active ingredients to stay on affected areas and throat longer.
This is also prescribed for cancer patients, infections and more. However, depending on  your insurance it probably won't be covered. It costs about $50.00 for 4.5oz.
There are many OTC products too. 
I thought this was interesting. Reminds me of the days of snake oils. Oh and this is $15.95.
There is a homemade version but I found that some of the ingredients, one must have a prescription for.

The lidocaine oral gel is prescription only.
A hygienist, I know, gave me this recipe. It can be used for any mouth pain.
1 bottle of Ambesol
2T of  generic liquid Benydrill
and 2T of generic mylanta
Mix this all up and you have a good magic type mouthwash.
For the nose sores the doctor will prescribe,
steroid nasal spray, topical steroid paste, and tell you to use Tylenol for pain. Because, ya know, when the pain is severe aspirin works so well. NOT......
 For those of you who want to see images you can click here.
 
That's it for today. 
Stay well my friends.
 
Nicole 

Sunday, May 25, 2025

Lupus Awarness day 25 Meds

 Hi Everyone!
 
Please note, I am NOT advocating that anyone should stop taking their prescribe medication. Everyone reacts differently to meds. What works for you may not work for me. I am just giving a time line of lupus medication.
 
Research on Lupus in western medicine began in earnest in the 19th century. In the mid 1800s, leading Viennese physicians Ferdinand von Hebra.

  and his son-in-law Moritz Kaposi wrote the first treatises recognizing that the symptoms of Lupus extended beyond the skin and affected the organs of the body too.
 
In 1894 Dr. Payne introduced quinine   use for discoid lupus. An antimalarial made from the bark of the cinchona tree that is native to S. Africa. This is to rid malaria parasites, especially in the red blood cells. However, it is also found to have anti-inflammatory effects.
4 years later salicylates in conjunction with quinine was a significant step in lupus therapy.
Salicylates, ya know aspirin. 
 
A revolutionary discovery in 1935, the cortisone hormone, led to Corticosteroids. It wasn't until 1948 that they were available. Today there are close to 20 Corticosteroids that doctors prescribe. Most often for lupus it is prednisone, or Dexamethasone. Pred is my cortisone of choice. When I am flaring it works. There are many uses for Corticosteroids such as; asthma, allergic reactions, arthritis, inflammatory bowel disease, adrenals, blood or bone marrow conditions. It decreases inflammation, slows an overactive immune system or replaces cortisol.  When I worked, as a Vet Tech, we called it the miracle drug. Then, I never thought I would be taking it for my life. 
 
In 1955 Hydroxychloroquine was approved in the US. It is also sold under the name of Plaquenil. It is also for the treatment of malaria, RA, Lupus and porphyria cutanea tarda. Uh yeah, I had to look that one up.
I have taken this medication and I will never take it again! For me the side effects were horrible. Head pain that NEVER stops, brain fog to the point of not being able to do anything, stomach cramps, vomiting, muscle weakness, hives, blurry vision, can't sleep, hallucinations, and feeling like I was going to die. 
This medication can cause blood disorder, low blood sugar, severe rashes, can cause heart problems and who knows what else. When the "thing" that sits in the white house told people to take this for covid I wanted to scream.
 IT DOES NOT WORK ON COVID!!!! and can cause other medical issues.
 
OK, next comes immunosuppressants. In the 1960s lupus research was significant. With the knowledge of hyper-active immune system in lupus patients the next logical step is to suppress. If you are old enough to remember the 1960's there was a  fast growing medical field for organ transplant. These transplants allowed shared information for suppressing immune responses and reducing inflammation. One of the earliest medications was  Azathioprine. Also, and I am so impressed with this, Cytoxan, an alkylating agent derived in the 1960s from WWI mustard gas. It saved lives by preventing mortality from kidney failure and other severe lupus manifestations. In the late 1990s, CellCept was introduced as an alternative to Cytoxan.
It is a complex medication and used for lupus patients with kidney disease.
 
In the 2011 Rituximab, a biologic came out. So what the heck is a biologic? It's a type of medication obtained from living organisms. Ya know, like bacteria, viruses or human cells.
 They are used for a lot of things, autoimmune, cancers, and infectious disease. They work by targeting specific components of the immune system or by providing missing proteins or other substances that the body needs. Ever since I've known about biologics, 
it just freaks me out. 

In 2011, the Food and Drug Administration finally approved Benlysta, the first drug that was specifically developed for SLE.  Benlysta works by suppressing the B-lymphocyte stimulator (BLyS) protein, a key mediator of the immune response. Patients with lupus have elevated levels of BLyS, and it was hoped that inhibiting the protein would quiet the disorder. Phase III clinical trials showed that Benlysta, in combination with standard therapy, significantly reduced the severity of symptoms and lowered several blood biomarkers of the disease compared to standard treatment alone.
So far, no matter what new med comes out you still have to take other immunosuppressants and cortisone.
 
I do not take any lupus medication with the exception of prednisone for flares. I take a host of vitamins and herbs. Decades ago I did "extreme" research and made my own medication. It doesn't matter what meds you take you will still flare, have medical issues and at times feel like you have been hit by a mac truck. On the other hand, in the past I have been in remission for years at a time.
 

If you have read through this to the end, YAY for you. Please leave me a comment to let me know how brave you are. LOL
Well wishes to all of you.
Nicole.

Source citing
google search