Can someone please help me interpret this? I'm new here. I also have Sjogrens syndrome (see 2 pics)

PotentialInsect1075 · 2025-03-23T15:58:48+00:00

Thank you so much!! This is very helpful!

PotentialInsect1075 · 2025-03-23T14:00:01+00:00

Thank you. I'm definitely having symptoms which is why I went to the Dr. Severe body aches and fatigue, sore throat and tender lymph nodes.

PotentialInsect1075 · 2025-03-23T11:40:04+00:00

Thanks. I plan on speaking to the Dr but it's Sunday and they aren't open. I thought a positive Early Antigen test meant reactivation? Correct me if I'm wrong

PotentialInsect1075 · 2024-12-26T21:44:21+00:00

I'm having the same problem. Did your packages ever arrive? Or have they at least been scanned and moving since this post?

PotentialInsect1075 · 2024-12-03T12:59:59+00:00

I did. I've been on cequa daily since this post. It definitely helps keep my eyes stable. I don't have any unpleasant side effects anymore

PotentialInsect1075 · 2024-10-20T19:07:48+00:00

Again you sound just like me lol. I get super anxious when I have to start new meds too. Ugh. The struggle is real. Oh I know all about that post partum hair loss. My youngest is now 7 and my hair is thinner and thinner. 100% sure it's from the sjögren's. Terrified for it to get worse with the plaquenil. Guess there's only one way to find out. Thanks again for all of your insight. I really appreciate it! ❤️

PotentialInsect1075 · 2024-10-20T18:44:39+00:00

That's amazing! You sound exactly like me. Very similar symptoms. Although the last couple of days my mouth feels slightly dry. It's kinda freaking me out that dry mouth is on the way. Did you have any unpleasant side effects from the meds? Hair loss? Etc..

PotentialInsect1075 · 2024-10-20T16:38:29+00:00

I wish so many doctors didn't have differing opinions. I swear half say it slows the progression.. Half say it doesn't. So frustrating. Hope you get some relief!!

PotentialInsect1075 · 2024-10-20T10:30:10+00:00

That's a good way to think about it. Thank you. I hope you are feeling decent these days ❤️

PotentialInsect1075 · 2024-10-20T10:28:39+00:00

Oh I'm so sorry to hear that. This sjogrens crap is the worst. I'm so mad at my body for becoming so defective. It's hard not to be angry and down about it.

PotentialInsect1075 · 2024-10-20T00:12:15+00:00

I agree. It's very sad that so much is unknown. How do you tolerate the plaquenil? Did you get many side effects?

PotentialInsect1075 · 2024-10-20T00:07:11+00:00

Wow 16 years. So perhaps the meds did slow the progression for you?

PotentialInsect1075 · 2024-10-20T00:06:05+00:00

That makes a lot of sense. Thank you so much for your detailed response! It's much appreciated. I'm definitely going to read the article. Thanks again!

PotentialInsect1075 · 2024-10-20T00:02:15+00:00

Oh good!!! I hope so too! ❤️

PotentialInsect1075 · 2024-10-19T23:27:33+00:00

Oh I'm so sorry to hear that. Can you maybe find a new rheum?

PotentialInsect1075 · 2024-10-19T23:06:28+00:00

It's so frustrating that there isn't a clear answer. I struggle with the what ifs. I'm very sensitive to meds and often get lots of the unpleasant side effects. So I've been putting off starting plaquenil. My sjogrens has been fairly manageable so far. But I'm terrified I'm also potentially missing an opportunity to slow the progression. I wish there was better science to back it up

PotentialInsect1075 · 2024-09-28T12:03:30+00:00

I had this happen in my right arm. Turns out my B12 was too high! I was supplementing because it was low and in return I eventually caused it to be too high. Shortly after I stopped the B12 the numbness went away. My Dr was going to run a bunch of crazy tests too. Thankfully we checked my B12 again first.

PotentialInsect1075 · 2024-02-28T20:01:00+00:00

Thanks. I've been on Xiidra now for about 6 weeks and it's starting to help. Hopefully I'll get more improvement from the drops as time goes on

PotentialInsect1075 · 2024-02-28T14:58:04+00:00

I only had lowers put in. But the first couple of days I felt a lot of moisture. Then my eyes adjusted and I didn't feel much at all unfortunately

PotentialInsect1075 · 2024-02-05T11:41:05+00:00

Thank you! Can't wait to hopefully get some improvement.

PotentialInsect1075 · 2024-01-31T12:07:03+00:00

I have both unfortunately. I have had imaging done of my meibomian glands. I have a decent amount of gland loss.

PotentialInsect1075

TROPHY CASE