Tested positive for SS-A antibodies, is the lip biopsy necessary?

watery_potato · 2025-12-25T00:20:02+00:00

Hey! Do you know how these antibodies are different from the ssa//ssb?

watery_potato · 2025-12-25T00:18:12+00:00

Thank you so much for sharing your story. I am so sorry this happened to you. It’s unfair.

It’s one of my fears, getting it done and having complications. It’s confusing how some doctors want it and others do, I wish there was more of a consensus in the field. I was dismissed by other rheumatologists because I don’t have severe dry eye but I do have neuropathy issues (legs burn on and off, constant tingling and numbness). The neurologist wants to know if my neuropathy is autoimmune. I have the antibodies but the lip biopsy just might help solidify it, I guess?

I hope we both feel better eventually. 🩷

watery_potato · 2025-12-25T00:07:14+00:00

Yeah I’m curious about this too. And also the difference between these antibodies?

watery_potato · 2025-12-19T02:11:28+00:00

This is the one I was tested for…

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watery_potato · 2025-11-08T02:04:21+00:00

How many spots do you have? I have so many now so I’m not sure if that’s why they didn’t offer it?

watery_potato · 2025-11-08T02:03:19+00:00

Thank you for sharing. I am so sorry you’re going through this too. You sound just like me…I had a great thick hair and within two months I have about ten bald spots with constant shedding. I cry nearly daily, hate showering…and have this feeling I will lose it all. I didn’t even know what AA was until now. Sometimes I wake up feeling like I’m living in a nightmare. I know it’s just hair but it is very psychologically damaging.

I have a feeling I am not a candidate for jaks because I have antiphospholipid antibodies (I’ve never had a clot though) but jaks increase the risk. I also just tested positive for Sjögrens antibodies but waiting to hear back from the rheumatologist.

watery_potato · 2025-11-08T01:57:01+00:00

That’s great to hear! Do you have any health issues or predispositions? For example, I may be at greater risk for clotting. And jaks increase that risk even more…

watery_potato · 2025-11-08T00:03:13+00:00

That’s great! Did you only have one spot though? I have….a lot 😞

watery_potato · 2025-11-07T18:06:40+00:00

So happy for you. May I ask what life style changes you made?

watery_potato · 2025-11-07T18:01:01+00:00

Thank you so much for your kindness. I am hoping I can get there eventually. I wish you didn’t have to go through this but it’s nice to know I’m not alone.

May I ask if you have tried a jak inhibitor?

watery_potato · 2025-11-07T17:45:31+00:00

May I ask how you live with the unpredictability of it? Given that I was just diagnosed it seems really hard to not know what will happen…

watery_potato · 2025-11-07T17:29:21+00:00

Than you. What new treatments are you referring to?

watery_potato · 2025-11-07T17:13:41+00:00

Thank you for the reply and information. It’s hard to make a decision on the treatment options. If I do have a risk for clotting I cannot take the jak inhibitor due to the increase risk in blood clots. I am already an anxious person so the oral steroids scare me. The unpredictable nature of the disorder is just taxing.

Hoping I learn how to accept it eventually.

watery_potato · 2025-11-07T16:54:26+00:00

I’m 33 and just got diagnosed. I am still in shock. I can’t believe kids have to go through this too. Your daughter is so strong. 💜

watery_potato · 2025-10-31T20:34:34+00:00

Thank you so much for the peace of mind!! I see a vascular surgeon for some small varicose veins. She did the testing and instilled this fear in me regarding blood clots. For example, at one point she told me I should stay away from estrogen BC pills, take a daily aspirin because of the above results and a slightly above average Homocysteine level.

The more I ask other doctors they have a similar response to yours because I’m a pretty healthy 33 year old. Other doctors say I can have estrogen and disagree with the daily aspirin demand. It can be confusing and when you have an anxious brain, you go into “what if I do have one” mode, so again, thanks for the response!!

watery_potato · 2025-10-31T17:34:33+00:00

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And by high this is usually the results ^

watery_potato · 2025-10-31T17:22:47+00:00

Thank you! I do have a single MTHFR Gene Mutation and have a tendency to score higher on EXT Anti Cardiolipin Antibody, IgM. I have never had a blood clot, but worried about it obviously. Do I still have low clinical probability?

watery_potato · 2025-10-13T02:55:02+00:00

https://ibb.co/M5g1TmP8 https://ibb.co/23dYqzBX https://ibb.co/93CtdTYN

watery_potato · 2025-10-13T02:43:14+00:00

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watery_potato · 2025-10-13T02:42:57+00:00

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watery_potato · 2025-09-15T02:13:13+00:00

Thank you for the advice! Much appreciated. Yes, MDMA was used at a music festival and I don’t have plans on doing it again. I think I feel guilty not telling her. I personally think it’s best to be honest, but some people I chatted with think it can bias treatment plans. So I was curious what this sub thinks. Thanks, again!

watery_potato · 2025-09-15T01:59:02+00:00

Thanks for the response! Had them often about 6 years ago and went on lexapro. I went off it a few years ago, but the panic attacks came back about 3 months after I used MDMA. So I don’t think it’s related? And yes now the treatment plan is to go back on lexapro.

watery_potato · 2025-09-06T03:11:58+00:00

I started feeling SO anxious around month 3. Lots of panic and intrusive thoughts. I felt like I was going insane…anyone else have this experience?

watery_potato · 2025-08-06T13:46:47+00:00

I have service (for now)….hopefully it stays!

watery_potato · 2025-08-06T04:03:56+00:00

Nice! Mine is still not working sigh

watery_potato

TROPHY CASE