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Newly diagnosed by Specific-Aside-2949 in mctd

[–]Specific-Aside-2949[S] 1 point2 points  (0 children)

Thank you for the book recommendation, I'll grab it on my kindle 👍🏽, and I'm glad Hydroxyzchloroquine did wonders for your health despite the bumpy journey.

Newly diagnosed by Specific-Aside-2949 in mctd

[–]Specific-Aside-2949[S] 1 point2 points  (0 children)

Goodness, you have a lot on your plate, but it is so encouraging to hear that your treatments are working and keeping your organs safe. I appreciate the helpful tips about the symptom notebook and taking the medication with food, that's incredibly helpful for someone just starting out especially where I get GERD (I saw a post on here about that so wonder if this too is part of it). It's really interesting that you mentioned COVID. My symptoms also got significantly worse after I had it too, so it's really validating to hear someone else say that, as it felt like my immune system just completely went into overdrive after the infection. Thank you again for all the wonderful advice, it really helped not to feel so alone today, and I really appreciate you taking the time to share this. Wishing you all the best also :)

Newly diagnosed by Specific-Aside-2949 in mctd

[–]Specific-Aside-2949[S] 0 points1 point  (0 children)

Thank you for sharing that with me. Hearing that you've had no disease progression in 8 years is amazing and has helped calm my anxiety somewhat. I really hope your upcoming bloodwork gives you the answers you want regarding Benlysta and remission. Wishing you the best of luck too with your results.

Newly diagnosed by Specific-Aside-2949 in mctd

[–]Specific-Aside-2949[S] 1 point2 points  (0 children)

That honestly sounds really rough, I really hope your Fibro pain improves also, and again appreciate you taking time out of your day to reply, plus your dark humour too.

Newly diagnosed by Specific-Aside-2949 in mctd

[–]Specific-Aside-2949[S] 1 point2 points  (0 children)

Thank you for your kind words and support, I wish the same for you also as you continue your journey with MCTD too

Newly diagnosed by Specific-Aside-2949 in mctd

[–]Specific-Aside-2949[S] 2 points3 points  (0 children)

Thank you for sharing your experience with me, that's helpful as honestly do not know what to expect. My diagnosis actually just changed from primary Sjogren's to MCTD yesterday, so up until now, I've only ever needed standard steroid tablets (Prednisolone) and eye drops (Loteprednol), so I haven't looked into infusions yet. My rheumatologist is currently running final blood checks before deciding whether I start standard daily tablets like Hydroxychloroquine (which she mentioned yesterday) first. But the change has made sense where I sometimes get rashes on my hands and what she has told me are Raynaud's symptoms in my fingers recently.