Anyone here (or a relative) with Lupus?

[csandste]

I realize there are specific support groups out there, but sometimes you get information from parties that aren't consumed by the subject. Not me, my 38 y.o. daughter. Previously had been diagnosed with Rheumatoid arthritis so there's obviously some autoimmune problems at work here. Seems to be having flares more and more often. Has been trying to get into a rheumatologist since last fall and finally got appointment scheduled for late April. Was hospitalized over night about a week or so again and the ER nurse said she's under observation for the same thing but they don't make quick diagnoses. Apparently this county of 400,000+ has no one specializing in it and even with two medical schools with teaching hospitals in the metro, people who treat it are few and far between.

A disease that can show up as just about anything doesn't sound pleasant.

 

[Yourhomiematt]

Fiancée is 29 and has it as well as rheumatoid arthritis. Alive and CBD helps get her through flares

 

[dlundblad]

My GSD has it unfortunately.

He has to be on medication for it. It took our vet quite a while to figure it out too. Thought it was allergies at first.

 

[ls973800]

My GSD has it unfortunately.

He has to be on medication for it. It took our vet quite a while to figure it out too. Thought it was allergies at first.

Our German Shepard mix was found to have it when she was about 2 years old and she is now 5 1/2. She takes 3 pills a day and her flair ups have just about gone away.

 

[Astro14]

My sister has Lupus. Her daughter has/had Juvenile Rheumatoid Arthritis.

 

[Anon9283]

My wife does. She just had an appt with her doc over Zoom yesterday. What questions do you have?
My wife also has a masters in disability counseling as well as a law practice where she specializes in disability rights, and as an advocate has had to speak up for herself on many occasions. We’re early/mid 30s for reference

 

[Leo99]

My company focuses on rare diseases in clinical trials at this time. Rare diseases are a tough thing to have because the return on investment is too small to interest big pharma so it's up to small pharma to research and development treatments. Even for a doctor, it wouldn't make sense to specialize in a disease that you might only see a small number of patients per year.

I looked for a clinical trial for lupus in Missouri and only saw one that is active. It's using a chemo drug to see if it works on lupus. Quite a bit of side effects I suspect so may or may not be worth it. Not enrolling yet but should start soon. https://clinicaltrials.gov/ct2/show/NCT04221477?cond=lupus&cntry=US&state=US:MO&draw=2&rank=6

 

[harbor]

My oldest daughter has lupus and it is one nasty disease.

 

[Zee09]

From my experience around here, it seems to be the most misdiagnosed-over diagnosed condition or disease out there.

It really needs to be confirmed by several doctors.

 

[Cujet]

I have MCTD (it's in the same family as Lupus, RNP antibodies) and Hashimoto's (autoimmune thyroid destruction, Tpo and Tg antibodies). I'm sensitive to sunlight, have extreme fatigue and if I don't take prednisone, can't even walk across the hangar floor, or stand up from a seated position. The end result is mitochondrial dysfunction.

I manage it with Prednisone to suppress the immune system, T3 thyroid meds 6x day to (as closely as possible) mimic a functional thyroid, Amino Energy (from Vitamin shoppe/costco, it's essential and non essential amino's, it's a huge help) and lactic acid buffers (I use Perpetuem from Hammer nutrition) during exercise.

I take a little extra T3 and Pred before exercise, along with Amino Energy and Perpetuem. This allows muscles to work well enough to actually do a bit of exercise. What I've found is that getting in a good workout results in a temporary reduction of symptoms (one day of relief) and seems to settle down the rash. The problem seems to be having enough energy to exercise.

I'm not kidding myself, I'm not getting better and diet/exercise are no cure. But at least I'm still functional.

It does not feel survivable without the Prednisone. The autoimmune attack is wildly out of control, with rashes, joints, heck it even attacks my eyes, especially my left.

Here is a link about Amino acids and Lupus. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7938307/

Note: Prednisone can cause obesity, which can make autoimmune disease much worse. Restrict calories.

 

[Cujet]

Just another quick thought. You can probably find an online lab that will do blood tests for antibodies and/or urine and saliva tests for disease markers. So it's a bit of a DIY situation. However, you can provide the results to the docs ahead of time.

 

[Cujet]

From my experience around here, it seems to be the most misdiagnosed-over diagnosed condition or disease out there.

It really needs to be confirmed by several doctors.

Today's antibody tests make diagnosis a bit more solid. As nearly all those with Lupus will have a positive ANA result. From there, the labs can drill down and see which specific antibodies exist.

And of course, there are some new drugs that treat lupus.

 

[AZjeff]

My 34 YO daughter has RA, thyroid problems and was diagnosed with Lupus. Fighting with BC/BS over meds and finding doctors who will take an interest is an ongoing nightmare. Hate it.

 

[Zee09]

My 34 YO daughter has RA, thyroid problems and was diagnosed with Lupus. Fighting with BC/BS over meds and finding doctors who will take an interest is an ongoing nightmare. Hate it.

Same with my mother in the day.
Eventually you just bail from all of the drama.
Way back in the day a "Lupus" doctor gave her a six-month prescription of the now defunct Darvocet.
She threw it out.

 

[Zee09]

Today's antibody tests make diagnosis a bit more solid. As nearly all those with Lupus will have a positive ANA result. From there, the labs can drill down and see which specific antibodies exist.

And of course, there are some new drugs that treat lupus.

Been through years of that. Lyme disease puts you in that category, but no doc here believes in it
Unless it hits them.

 

[dlundblad]

Our German Shepard mix was found to have it when she was about 2 years old and she is now 5 1/2. She takes 3 pills a day and her flair ups have just about gone away.

Good to hear.

We’ve been told he could live 2 years, 5, 10 etc.

 

[Leo99]

I have MCTD (it's in the same family as Lupus, RNP antibodies) and Hashimoto's (autoimmune thyroid destruction, Tpo and Tg antibodies). I'm sensitive to sunlight, have extreme fatigue and if I don't take prednisone, can't even walk across the hangar floor, or stand up from a seated position. The end result is mitochondrial dysfunction.

I manage it with Prednisone to suppress the immune system, T3 thyroid meds 6x day to (as closely as possible) mimic a functional thyroid, Amino Energy (from Vitamin shoppe/costco, it's essential and non essential amino's, it's a huge help) and lactic acid buffers (I use Perpetuem from Hammer nutrition) during exercise.

I take a little extra T3 and Pred before exercise, along with Amino Energy and Perpetuem. This allows muscles to work well enough to actually do a bit of exercise. What I've found is that getting in a good workout results in a temporary reduction of symptoms (one day of relief) and seems to settle down the rash. The problem seems to be having enough energy to exercise.

I'm not kidding myself, I'm not getting better and diet/exercise are no cure. But at least I'm still functional.

It does not feel survivable without the Prednisone. The autoimmune attack is wildly out of control, with rashes, joints, heck it even attacks my eyes, especially my left.

Here is a link about Amino acids and Lupus. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7938307/

Note: Prednisone can cause obesity, which can make autoimmune disease much worse. Restrict calories.

Wow. Wishing you the best. My mother took high doses of prednisone for Guillain-Barre Syndrome. Gave her moon face. But she tolerated it well. I've been prescribed it for asthma attacks and really bad poison ivy but my stomach can't tolerate it and it never seemed to do anything for me.

You seem very knowledgeable about your treatments and I wish you the best.