Oh my gosh, you need to see a doctor. Like now. Swelling in the legs AND face is edema, when it swells and you can push it and it doesn’t refill it’s called pitted edema, and it’s caused by an overload of fluid in your lymphatic system. While it can be caused by a number of things, you NEED to get checked for heart and kidney issues and clots/vascular issues ASAP if this is new onset and unexplained. This degree of swelling can injure your kidneys. If this is new for you, it is an ER level collection of symptoms.
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22
u/Karma-Electron
I had this on my lower leg and was diagnosed with vasculitis. I didn't get any meds and it resolved by itself in a year. But I had a milder case with less edema.
Good luck. It's so frustrating to have our bodies betray us like this!
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10
u/Bright_Treacle1353
I’ve had similar I have this a lot you need to evaluate ALLLLL new meds not later NOW! Make sure you are not having Steven’s John’s syndrome NOW! And make sure it’s not an allergic too! Then and only then treat it as an autoimmune and ask them for steroids stat. Go see a doctor blood draw asap if this this happened before. Please check the first two
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7
u/notroundupready
I wouldn’t take prednisone until I went to the er. Prednisone makes my liver enzymes skyrocket
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7
u/randomdecember
this might be vasculitis. does your rheum office have a provider on call? they may advise urgent care or ER. ?
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7
u/Alternative-Orange
Hi! I have sjogrens and vasculitis. I often get legs like this but nothing on the face. I am currently trying different medications for it through my rheum but nothing has worked so far.
I have had multiple incidents where I've ended up in A&E as it's got so bad and swollen and they haven't understood what it is and prescribed steroids. It hasn't worked for me.
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5
u/zengal108
I had something similar when they put me on plaquenil. Turns out I was super allergic.
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5
u/Asaneth
I get a somewhat similar rash (red and blotchy) only on the tops of my feet and my shins. They say probably vasculitis, but aren't positive at all. My rash can get super itchy if I don't treat it as soon as it starts to show up. No topical works, and steroids don't work, but for some reason hydroxizine at least takes the insane itching away. I was taking hydroxizine for something totally unrelated, and noticed that the itch lessened and resolved after I took it. Doctors listened to me, and now I have an hydroxizine RX just for the rash.
If you want to see what my rash looks like, google Hypergammaglobulinemic Purpura of Waldenstrom. That's what I actually think it is, but docs disagree.
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4
u/bigfattushy
I had this for years! Only thing that helped was compression socks until I got rituximab. I still get it a little but nowhere near as much. Ibuprofen and elevation when it's really swollen.
positive
4
u/Additional-Yard1410
I've had this randomly over the years on my legs and feet I was told mild vasculitis purpura/petechiae which came and went, then went to emergency with a bad episode over my calf swollen up but this time they tested me for pulmonary embolism (d dimer), but it was cellulitis according to the sonographer. Had some antibiotics & it went. I'd say you could have autoimmune vasculitis and need to see a doctor.
Thanks for sharing this!
Looking forward to the presentation.
preliminary outcomes analysis show survival rates of 69% (Day 28 and Day 60)
The save registry news was released on 5th March. Seems a bit early for the 28 day numbers. Hopefully, this 69% number includes most/all of the 50 SAVE registry participants.
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5
u/Master_Inside4685
69% —> am I misstaken or did we go from 77% to 69%? ?
Just a thought and something that was told to me and experienced by me. The low dose IG from scig or the dose your at now, can trigger the immune system as it does for people with immunodeficiency and can actually worsen autoimmune disease because the immune system is being woken up. Instead of balanced and immunomodulated
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2
u/CrazyDogLady37
I'm so sorry that you are going through this. For me, the brand really mattered. I tried Octagam and was getting terrible headaches, even with a slow rate and fluids before and after. Gammagard has been much better for me. I do 30g weekly. Also, I started with SCIG (Cutaquig), and I ended up switching to IVIG because SCIG wasn't reducing my infection rates. I know that they're supposed to be basically the same, my body is just extra weird.
None of this sounds exactly like what you are dealing with, but maybe try switching brands, and, if that doesn't help, increase to your previous dose, if possible?
Hoi hoi. Ik heb ook kir aa. Ik kan je niet echt iets vertellen over het testen van de embryo’s, maar bij ons hebben ze een persoonlijke donor gezocht (eiceldonor met c1c1) omdat mijn man c2c2 heeft. Krijg jij medicatie bij de terugplaatsing? Ik ben op zoek naar succesverhalen met het juiste medicatieprotocol.
Veel sterkte.