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
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12 comments:

Gene Black said...

Yes, I read it all..but then I am a total geek when it comes to medical stuff.
I once asked my doctor about mitochondrial disfunction in diabetes. He said "What? What are you reading?" I showed him the article from PubMed. He said "If you have read that, you know more about it than I do."

My name is Erika. said...

I take a biologic from my chronic hives. I'm at the point where I'm thinking I don't need it any more because my hives are not happening. Plus, I think our bodies get used to things, and it's good to stop them if you can so if you need them again, they will work. The process of making it from bacteria, etc. doesn't bother me because the bacteria is just the producer, and human insulin is made that way now too. And so many people are dependent upon human insulin. But I'd rather not have to take a medicine if I don't really need it. I do think we live in a culture that pushes drugs (legal medicinal), and any drugs can be bad for you if you use it wrong or take too much of it...etc. Sorry to babble on. But your post was really interesting and it does lead to some good discussions. hugs-Erika

Tom said...

...Nicole, take care and be well.

Debra She Who Seeks said...

Wouldn't it be wonderful if they could find a cure some day?

DVArtist said...

Thanks for reading all the way through. I have done the same, asking a doctor about some medicla thing and they don't have a clue.

DVArtist said...

Erica, you are not babbling. I shouldn't have said that biologic freak me out. Yes, insulin is a life saver along with so many other meds that are biologics that save lives. I have this weirdness about medications. I do know people with lupus who get infusions with bios once or twice a month. Thanks for your comment.

DVArtist said...

Thank you, Tom.

DVArtist said...

A cure would be good.

Christine said...

Good information

peppylady (Dora) said...

What worries me that Trump want to cut funding to the agencies that helps different diseases.

MELODY JACOB said...

You’ve laid out the history and reality of lupus meds so clearly — it’s eye-opening to see how far treatment’s come and how personal it all is. I respect your approach and honesty about what works for you. Just shared a new post. Check it out. Thank you.

baili said...

You indeed have done an incredible job here dear Nichole 👍
Many thanks for taking time and sharing such detailed information about the innovation of drugs for Lupus. I bet it will help many who wanted to know. This is impressive how long ago you made your own way to the treatment which is helpful till today to you !
I believe you are brave since I started visiting you 🤗🥰♥️