Newbie

[Numptybrain]

Hi everyone , it’s been a very long road to diagnosis but I’m here. I started with breathlessness and pain in shoulder blades back in early 23 , eventually had X-ray that showed bilateral pleural effusions and from there endless hospital admissions infections etc. My ANA is negative but my respiratory consultant and radiologist from ct scans etc can see the information and have now said it’s lupus Serositis . I’m seeing a rheumatologist who put me on prednisone and now I’m on mycophenolate which is playing havoc with my stomach so Lansoprasole is now 60mg, my stomach is so swollen and sore. I hope you are all as well as can be expected and can help me on this unknown journey . My GP has suspected autoimmune disease for years so did my previous gp I’m 62 now and my joint issues started at 28 making walking difficult and painful.

Thanks for reading

Take care

Wendy xx

[Prilo]

hello, sorry about how you are feeling and your reaction to mycophenolate. I had similar reaction though mine was worse as I had to throw up bile nonstop after I took mycophenolate. Luckily I was admitted at the hospital when the drug was given to me because my flare was horrible at the time but my rheumatologist was able to change the treatment to rituximab which worked for me so maybe you should ask for change of drugs if the side effect is too hard.

[Numptybrain in reply to Prilo]

I’ll see what f the increase in lanzoprazole and nortriptoline helps if not I’ll ask for a change but thanks for this information.

Take care

Wendy xx