What to expect, medication etc - First appointment since Systemic Sclerosis diagnosis

[Jules1821]

Hi, I hope you can advise. Since November 2023 I have had Raynaud's, then December Severe Dry Eyes and mouth, In May 2023 landed up with medication for Sicca Sjogren's (Cyclosporine & Pilocarpine). Blood test done at the appointment showed Systemic Sclerosis (anti TH/TO) as well. I was advised of this diagnosis over the phone at the beginning of June. My face to face appointment is 9th August.

I was wondering what medication they would start me with, as originally I thought I was going to be put on Hydroxychloroquine for Sjogren's.

Any advise what to expect or medication likely would be great.

TIA xx

[SheenaC]

Hi Jules I have had Systemic Sclerosis for over twenty years - as well as Rheumatoid Arthritis and Raynauds - so I have had lots of different medications. I was on hydroxychloroquine for a while (no problems) but taken off it a while ago. My main medication now is Methotrexate which I have been on for years. I am 87 years old and it is only now that things are catching up with me but until a couple of years ago I led a very active life and held down a responsible job - so don't despair. Good luck for your future.

[Jules1821 in reply to SheenaC]

Thanks SheenaC for sharing with me, it means a lot and sounds promising. Wishing you health and well-being.

[Juanburr1950]

Hello! I’m still on Plaquenel 400mg daily. I’ve been diagnosed with Lupus now. Along with Raynauds, Sjogrens, Mixed Connective Tissue Disease. I really don’t want to be put on any infusions. I’m very iron deficient and my doctors haven’t found out why. I’m doing really well right now on my medication.

[Jules1821]

Hi Juan, Thank you for sharing, I'm glad to hear that your medication is helping. I hope they do get to the bottom of your iron deficiency.