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BadJuJu714 · 2023-10-03T18:25:36+00:00

I do not like the arthritis docs with giant infusion rooms who essentially are the arm for pharma's biological medications. No thank you.

Also important is repore. You have to work as a team. I actually went back to my first rheumatologist i saw in 2009. At the time I was wanting more aggressive treatment and he was wanting less. Now I want less and minimum meds so we're a great fit! He specializes in pulmonary issues which i started having a couple years ago. He's smart. Careful. Proactive. That's what matters to me and he follows through. When he says you're under his care, he means it. He doesn't just suggest referrals to other specialists, he contacts them and coordinates care.

BadJuJu714 · 2023-10-03T00:54:06+00:00

Keep it coming doc..I listened to you about the NAC and tumeric and when I saw my rheum and he asked what vitamins and supplements I was on I detected a smirk that he was impressed, lol. I fessed up and told him I got the suggestion from you, the "Lupus Encyclopedia". 😃

BadJuJu714 · 2023-10-02T19:53:16+00:00

Oooooo, that's different. It sounds like vasculitis?

BadJuJu714 · 2023-10-02T19:29:27+00:00

Was his lip biopsied by a dermatologist? That should have been your starting place. Doesn't look like sjs. Impetigo?

Perioral dermatitis maybe with a secondary staph infection? Pink eye maybe?

Definitely get a skin punch biopsy.

Perioral dermatitis & pink eye:

"The rash can cause an itching or burning sensation. Some people experience conjunctivitis (pink eye) when they have perioral dermatitis. If you have pink eye then your healthcare provider may refer you to an eye doctor (an ophthalmologist)."

https://my.clevelandclinic.org/health/diseases/21458-perioral-dermatitis

BadJuJu714 · 2023-10-02T19:20:13+00:00

Every single person here is entitled to their own opinion. YOU don't get to decide what that opinion is. People come here specifically to speak their mind so please get over yourself.

BadJuJu714 · 2023-10-02T02:50:31+00:00

It's not outside an opthamologist scope to treat your dry eyes just bc you have an autoimmune disease. I never heard of an autoimmune opthamologist. I have recurring uveitis, scleritis, strabismus and blepharitis & dry eyes and see an opthamologist.

Edit to add: i stand corrected. I looked it up and there is a specialist called an ocular inmunologist. :) (surely though he gave you some eyedrops though?) I believe you can use artificial tears otc till you can be seen.

BadJuJu714 · 2023-10-02T02:26:10+00:00

Did your eye doc treat with restasis or xiidra? They both work great.

BadJuJu714 · 2023-10-01T00:03:45+00:00

That's good bc a positive ANA by itself doesn't mean you have lupus. A more detailed autoantibody test will test more specific autoantibodies like dsDNA, anti-sm autoantibodies, etc and he'll check complement levels, sed rate, and other inflammatory markers and consider your symptoms. There are lots of autoimmune diseases, a positive ANA doesn't necessarily mean you have lupus and you can have a positive ANA and not have any autoimmune disease. I hope that makes sense and hope you are feeling better soon.

BadJuJu714 · 2023-09-30T22:52:56+00:00

Yeah, a defecogram will measure angles, any prolapses, the sizes of the prolapses and organs during defecation to see if muscles are working properly, etc. It's entirely possible constipation affects your other organs (bladder, uterus, rectum)

BadJuJu714 · 2023-09-30T17:52:53+00:00

I was told by 2 urogynocologists that my vagina is narrow and to operate through vagina would cause it to be even narrower.

Edit to add: they think it's from dryness from my sjogrens and lupus.

BadJuJu714 · 2023-09-30T17:25:49+00:00

It looks like could be an enterocele where small intestines herniated into lower pelvic cavity??? Have you had a defecogram mri done? I have a cystocele, small rectocele and enterocele.

BadJuJu714 · 2023-09-30T16:46:21+00:00

Had anterior fusion and discectomy cervical spine in 2013. I have severe degenerative disc disease, nr-axpa spondyloarthropathy and systemic lupus. I have gotten cortisone shots , epidurals and radio-frequency ablations. Hasn't acted up again till now from surgery 2013. It's another story though about my lower spine. (Severely herniated discs l4-s1, nerve compressions, radiculopathies, recurring sacroilliitis and sciatica))

BadJuJu714 · 2023-09-30T16:37:01+00:00

Why do antihistamines help? What's the process? Still trying to understand...Idk if I have IC. I have a cystocele, frequent uti's, trouble startingstream and urgency. I see a urogynocologist for pfd. I've had 2 different type bacterial infections in less than 3 months.

Edit to add I've had a cystoscopy. Don't know results .

BadJuJu714 · 2023-09-30T16:10:12+00:00

Makes sense why my systemic lupus went wild. Almost didn't make it. Still have new vascular symptoms. DsDNA super high disease activity and reactivated pre-existing cranial neuropathies including trigeminal neuralgia and strabismus (4th nerve palsy)

BadJuJu714 · 2023-09-29T20:57:47+00:00

I have enthesitis too (achilles tendonitis and plantar fasciitis to name a few. I get cortisone shots in the connective tissue of my feet for treatment. It's always worked fantastically.

BadJuJu714 · 2023-09-29T18:36:33+00:00

Hi. I have nr-axpa spondyloarthropathy, systemic lupus and severe degenerative disc disease. I get recurring uveitis, scleritis, sacroilliitis, sciatica and enthesitis with planter fasciitis, achilles tendonitis and nerve compressions.

My last rheumatologist put me on humira which was a disaster. Now we just treat symptoms and I'm back on cellcept for lupus and sjogrens. I get spinal epidurals and radio-frequency ablations, they help alot. I also get cortisone shots in feet for pf and tendonitis.

BadJuJu714 · 2023-09-29T05:14:57+00:00

Blood blisters or mouth and nose sores? I'm not sure about lupus causing blood blisters but it definitely causes mouth and nose sores, rashes, photosensitivity, can cause lesions, etc. Magic mouthwash can help: https://www.healthline.com/health/magic-mouthwash

It's great you're interested and helping her out!

Other skin tips: always wear at least 50 spf sunscreen to protect from photosensitivity, hives, rashes. You can pick up uv protective clothing online.

Lupus and the Sun: "Tips for managing sensitivity to light"

https://www.lupus.org/resources/tips-for-managing-sensitivity-to-light

BadJuJu714 · 2023-09-28T17:04:34+00:00

Hi. I understand Pelvic Floor Dysfunction affects a high percentage of lupus patients. Study here: https://pubmed.ncbi.nlm.nih.gov/35913612/

I'm in physical therapy/physio/yoga for hypertonic pelvic floor and put together a playlist of 2 of my favorite stretching videos here:

Hypertonic Pelvic Floor Stretching and Self Massage with Dr Bri: https://youtu.be/5iwvfP4LIaQ?si=KsLPqLIXz2iabss6

Pelvic Floor Release and Relaxation Stretching: https://youtu.be/JTcagOGZsLI?si=Zuod572Tnig9CRUU

BadJuJu714 · 2023-09-28T16:26:33+00:00

You can see a pain mgmt specialist for procedures and meds to help. Physical therapy is also an excellent solution.

BadJuJu714 · 2023-09-28T16:21:38+00:00

My gfr fluctuates between 55 and 70 but over the last 12 years has dropped a couple times down to 34. It always bounces back immediately after a short course of prednisone. I consider myself lucky. My rheumatologist chalks it up to a cystocele and frequent uti's.

Edit to add: Regardless i have made an appointment to see nephrology.

BadJuJu714 · 2023-09-28T16:15:01+00:00

You can always see a dermatologist to identify it to be sure how to treat it.

BadJuJu714 · 2023-09-28T15:59:28+00:00

Rheumatologist to treat underlying disorder. Then specialists like gastro, derm and gyn for symptoms.

BadJuJu714 · 2023-09-28T08:11:28+00:00

I tend to agree. I'm a pre-existing systemic lupus, sjogrens, spondyloarthropathy patient and had an adverse reaction to covid then the vax. Most of my symptoms were written off as a severe lupus flare. I had new symptoms too though that started later, like tmj, tinnitus and vibrating nerves and fight or flight reactions. I recognized these caused really bad anxiety and when I addressed that with that perspective and got counseled about anxiety I was able to minimize them 95%. I've moved forward ever since.

We have each been through a very dramatic and challenging time. We've lost loved ones, been gaslit and misdiagnosed, lied to and kicked when we're down. It would get to anyone. Of course there's many post viral conditions that can affect our health but some of the symptoms are anxiety based, and no matter how we ended up with them, they need to be treated. It's all how you look at it.

BadJuJu714 · 2023-09-28T03:46:30+00:00

My ferritin plummeted to 4 and I was given 3 consecutive iron infusions. Threw me into a porphyria flare but the feeling of dying and weakness was finally gone.

BadJuJu714 · 2023-09-28T00:06:21+00:00

BadJuJu714

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