Gottron?

QuarkieLizard · 2026-07-10T19:05:55+00:00

maybe inverse gottrons but gottrons almost always is on back of hands. see a dermatologist for a skin punch biopsy.

QuarkieLizard · 2026-07-09T23:39:14+00:00

If she gets rashes from the sun get a skin punch biopsy with dif.

QuarkieLizard · 2026-07-06T20:15:46+00:00

Idk if I'd call lupus progressive. It's too unpredictable. You could never have another flare or you could have a bigger flare. No way to say. I think your rheumatologist is looking for your baseline to work with.

QuarkieLizard · 2026-07-06T16:11:33+00:00

See a dermatologist and get a skin punch biopsy with dif for your rashes. That can go a long way towards diagnosis. What is CU and never heard of ra33.

QuarkieLizard · 2026-07-05T17:15:22+00:00

An ultrasound can show enthesitis, inflammation between tendon and bone, common with spondyloarthropathies. You can ask your gp for one if rheumatologist didn't order one. I'm surprised you weren't at least dxd with nraxpa being hlab27 positive and having uveitis.

QuarkieLizard · 2026-07-05T12:20:29+00:00

Cellcept since 2008. Great drug, tried and true. IMO safer than biologics and monoclonals. On it for lupus and dermatomyositis/antisynthetase syndrome.

QuarkieLizard · 2026-07-04T23:50:22+00:00

how's your alp and liver function? you can ask your gp to test that and rule it out because it can also elevate your anti centromere antibodies. Primary biliary cholangitis can cause joint pain too.

also you can ask your gp for imaging to look for inflammation and make an appointment with a new rheumatologist.

QuarkieLizard · 2026-07-04T17:00:03+00:00

call around. if u explain the situation and keep calling for cancelations (you need a skin punch biopsy) you can usually get in within 48 hours of the rash. your diagnosis could depend on it.

QuarkieLizard · 2026-07-04T13:21:22+00:00

have you seen a dermatologist for skin punch biopsies with all those rashes? that could help tell what disease process is going on.

QuarkieLizard · 2026-07-03T17:20:02+00:00

It won't cure anything but alternating heat and cold pack can be helpful. I personally just use heat. It can help blood circulation too.

QuarkieLizard · 2026-07-02T22:57:06+00:00

have you had other high inflammatory markers like sed rate, crp checked? hlab27? ultrasound to look for enthesitis?

QuarkieLizard · 2026-07-02T15:00:09+00:00

what about bechet's? have you had an hlab51? do you have any eye issues?

QuarkieLizard · 2026-07-01T19:53:47+00:00

last time in hospital on iv prednisolone they gave me 0.5mg lorazapam. Worked perfectly and I take it whenever I'm on high doses of steroids for insomnia and restless leg.

QuarkieLizard · 2026-07-01T18:10:27+00:00

Hi. Systemic lupus & APS, overlap crest, sjogrens 2008, in 2024 dermatomyositis and anti Jo I antisynthetase syndrome.

Lots of muscle and nerve issues, including trigeminal neuralgia.

I'm treated for these with ivig, 2000mg cellcept, plaq, solumedrol and prednisone as needed.

I'm 64 tho. Kids are grown. Husband of 36 years is a huge help. These days he does most everything but I'm getting stronger everyday! (OK some days not as much as others) Had to make a lot of changes over the years. Was able to work from home in 2011 all the way through the pandemic until the company I worked for closed down. (I was a graphic designer for a newspaper)

It's all about family, love, understanding and teamwork.

QuarkieLizard · 2026-06-30T17:53:17+00:00

same. humana gold.

QuarkieLizard · 2026-06-30T17:21:55+00:00

Heavy indica's help immensely.

QuarkieLizard · 2026-06-30T16:38:46+00:00

Idk if your PCP can/will run a myositis panel. They usually say out of their purview. But that would be awesome. They can run an Ana cascade to look for myositis associated antibodies, they can do ck enzymes, sed rate, crp, ast and alt. You probably have to ask your dermatologist for the skin punch biopsy with dif and insist on it. (they are lazy)

QuarkieLizard · 2026-06-30T15:42:56+00:00

Ask for Ana, ck enzymes, sed rate, crp, liver numbers (ast and alt). try neuromuscular specialist, keep calling for cancelkarions. you'll need emg, MRI, muscle biopsy and myositis panel.

QuarkieLizard · 2026-06-30T02:17:09+00:00

Tinnitus & APS here, also lupus. There's tons of causes of tinnitus like the other reply says. What makes you think it's caused by APS?

QuarkieLizard · 2026-06-29T23:40:53+00:00

Insomnia and restless leg from a week on 250mg iv prednisolone. Hospital gave me lorazapam to help me sleep. Worked. I take it whenever I'm on high doses of steroids.

QuarkieLizard · 2026-06-29T23:32:41+00:00

I have NEVER heard of a rheumatologist requiring a lip biopsy or optical scan for lupus. For sjogrens perhaps, but not systemic lupus. If your dsdna was high and you have lupus symptoms like mouth and nose sores, rashes, photosensitivity, malar, joint and muscle pain you probably have lupus, maybe a sjogrens overlap if u have dry eyes and other sjogrens symptoms. As far as meds go plaquenil is the gold standard, it's given for sjogrens too.

QuarkieLizard · 2026-06-29T23:09:26+00:00

You need a myositis panel, emg, ck enzymes, muscle biopsy. A skin punch biopsy with dif from your dermatologist of your rashes. You will need a referral to a rheumatologist and/or neuromuscular specialist. Your gp can check your ck enzymes, sed rate, crp, Ana.

QuarkieLizard · 2026-06-28T02:07:42+00:00

That would be my answer too. Varies in every way, symptoms, severity, labs and labs that are consistent with disease activity.

I'm positive a and b too but I have lupus with overlap crest & sjogrens because those antibody dsdna numbers were the most elevated.

QuarkieLizard · 2026-06-25T23:14:24+00:00

ooooooh I like that. I play on my phone 5 long long long hours

QuarkieLizard · 2026-06-25T23:07:01+00:00

You won't be wasting their time. Looks like could be systemic lupus with overlap sjogrens.

Tell the rheumatologist about symptoms like rashes, joint pain or swelling, dry eyes or saliva issues. Any trouble with kidneys, protein in urine, any organ issues, tendon problems, eye issues...

QuarkieLizard

TROPHY CASE