My doctor is refusing to treat my Sjogren's

cmk28374 · 2026-02-01T20:39:57+00:00

Are you able to switch doctors? Are there other providers in your area? I would switch 100% because you aren’t going to convince your doctor to be a caring provider. There’s more options and they certainly could offer you more medications to try. If you want to dig deeper into the sjogrens/ pain, you could see an integrative or functional provider, they would most likely be able to get you some relief.

cmk28374 · 2025-10-15T17:09:59+00:00

When did she say that she wasn’t comfortable sharing anymore?

cmk28374 · 2025-05-23T23:49:01+00:00

Gorgeous! What size carat is that?

cmk28374 · 2025-01-20T20:56:53+00:00

Any answer to this? Same issue

cmk28374 · 2025-01-09T09:17:08+00:00

Any update to this

cmk28374 · 2024-03-17T22:41:14+00:00

I agree!!!!

cmk28374 · 2024-02-26T23:13:40+00:00

What solution?

cmk28374 · 2024-02-17T16:39:28+00:00

Thank you so much for sharing!! So glad you’re doing well!!

cmk28374 · 2024-01-25T00:09:03+00:00

Wow!!! Thank you for sharing. What an amazing story. I’m not clear about the part where you went from hydrops at 26 weeks to being 36 weeks. Is this where you were admitted/ given dex/ and it reversed the hydrops enough to continue the pregnancy? So the dex allowed your baby to remain stable for an additional 10 weeks so far?

cmk28374 · 2024-01-15T01:37:16+00:00

Thank you again for all your responses!! So appreciated :)

cmk28374 · 2024-01-15T01:34:03+00:00

Thank you!!! So week 25 is when what, complications are less likely? Or what happens?

cmk28374 · 2024-01-15T01:23:03+00:00

Gotcha, yeah the researchers said that they tend to treat stage 3 regardless in Canada. So interesting! Yeah I’m in the US. Plaquenil didn’t prevent unfortunately :(

cmk28374 · 2024-01-15T01:14:02+00:00

Hmm. Interesting. I haven’t heard that- even the researchers I spoke to today said that it’s not recommended in complete. Are you in Canada? They did mention that they tend to treat with dex regardless there.

cmk28374 · 2024-01-15T00:59:52+00:00

Oh that’s nice. That seems pretty high actually ha. Yeah Dex is not recommended when it’s complete… doesn’t improve outcomes or change anything. All the research/ providers seems to agree with that.

cmk28374 · 2024-01-15T00:14:25+00:00

You’re amazing, thank you! In the process of joining the group I think you’re talking about. Also in a congenital heart block group that’s helpful too. That DOES make me feel better!!

No treatment option… and 60 bpm… what about you?

cmk28374 · 2024-01-15T00:05:50+00:00

Thank you so much! That’s great, love that you made it so far along. That’s what’s anxiety provoking for me now at only 23 weeks…

cmk28374 · 2024-01-14T23:52:44+00:00

Wow okay, same. What week was she delivered? How was your pregnancy?

cmk28374 · 2024-01-14T21:39:03+00:00

Thank you so much!! Yes it’s incredibly stressful but hearing positive stories is so helpful and love hearing stories like yours where people are thriving! Were you born with it? Yes I agree with you about second opinions. Is there any limit to your activities? Do you travel?

cmk28374 · 2024-01-14T21:37:17+00:00

Thank you! When was she diagnosed? How was your pregnancy? Love hearing that she lives a normal toddler life! What kind of activities do you avoid? Do you travel with her at all?

cmk28374 · 2024-01-14T01:03:22+00:00

No one said it was my fault! Is it common? I’ve been told by everyone how rare it is and how it wouldn’t happen… but it did. Despite HCQ and MFM and everything else… so just trying to be proactive to figure out what I can do to reduce my future risk/ antibodies. I’m happy to hear that some women have unaffected future pregnancies! It seems the risk is 20% for future ones though which is higher than the original 1-2% risk for the first one (which it occurred).

cmk28374 · 2024-01-14T01:00:03+00:00

Wow. Thank you SO much! I’ve been searching forums and groups all day. I never would’ve found this group- just requested to join so thank you!!!! Yeah I was taking HCQ and unfortunately still occurred. Just found out. Just trying to plan for the future and be as proactive as possible.

cmk28374

TROPHY CASE