u/cinnamontwix

I’ve been getting IVIG for a year now. I recently changed doctors and they increased my dosage from 30 to 60G every 3 weeks. I was so stressed out that the side effects would be even worse as I’ve been beyond miserable after every infusion with such horrible side effects. My first 3 infusions at 60G were horrible. I was actually waking middle of the night on night 1 with the worst headache ever. I just chalked up the horrible headaches to residual brain inflammation from having meningitis encephalitis last year.

My infusion nurse has been amazing and she has been behind the scenes tweaking different things and I finally had my first infusion without side effects for 3-5 days!!!!! I only got sick towards the end of my infusion and the rest of the evening after but woke up feeling fantastic the next day!

I just wanted to share for those that are in my “before” shoes that there can be an “after” that’s different.

I have been seeing a local rheumatologist for several years now. I have been dx with seronegative RA overlap syndrome w/sjogrens and lupus, other dx they’ve used are UCTD. I also have APS, lupus anticoagulant positive & anticardiolipin antibodies, small fiber neuropathy, fibromyalgia, CVID, have a lot of skin issues they believe may be some kind of vasculitis related but they really don’t know. These are the main issues. My current tx regimen is Orencia, hydroxychloroquine, mycophenolate mofetil, gamunex-c infusions every 3 weeks, then a lot of steroid injections in joints and various other meds for CNS problems. My dr referred me to a university hospital hoping to get a tertiary team to figure out how to get everything under control because despite all of this, I’m
Still having pretty significant flares with my latest crp 14 and ESR 48.

I have so many specialists and so many medical records, when I see my new rheumatologist, how or where do I begin and what relevant medical records should I make sure they have so they aren’t inundated with over 1000 labs (my portal stopped counting at that for one office)?

It’s very overwhelming to see a new specialist and my current rheumatologist is new as he took over for my previous one who retired (and I don’t 100% trust there to be communication as I have a frustrating time communicating with his office) and trying to explain everything because there is so much and so much that has been tested at so many different drs.

Added some photos for reference. Also you may notice from the photos, my right side is the primary side affected joint wise and skin wise. Both sides have inflammation and the skin rash is on my left arm also but not nearly as bad. I had my PE on the right side if that makes any difference.

Happy to answer any questions and open to any and all advice on how to proceed to get this all under control. I have not had a normal QOL for several years. In the past 3 years alone i have been hospitalized for a PE and meningitis encephalitis.

IT FINALLY HAPPENED!!!!!

Complex Autoimmune and New Rheumatologist