Had the second part of the infusion on the 5th of December. Was totally fine until the 20th when I woke up with swollen toes. The went down after a few hours but returned later that night. Long story short every day I woke up the swelling was getting bigger and bigger and going up my leg. By Christmas Eve I was in pain and felt like I was walking on sponge. By Christmas Day my family was adamant I should go to the hospital but I refused because this was the first Christmas since 2015 that I wasn't in hospital. Anyway by the 27th I was calling my Rheumy nurse non stop, evenutally they saw me on the 30th, I was in so much pain, unable to sleep and truly believed my legs were going to explode. They were so shiny, with little bubbles of pinkish fluid coming out.
Turns out the pink was the blodd beginning to seep out as it was 'bursting' so to speak, they said that is why my entire leg from knee to toes was shiny. They thought it could be either my liver, kidney or heart. Heart and Kidney came back okay. Liver blood results showed damage, however my Rheumy is convinced it was a side effect of the Rituximab, which I truly hope not as the infusions really work. I was given water tablets to get rid of the fluid and I have to weigh myself every day at the same time. I was only allowed to drink a litre of water a day. They finally went down completely last Friday; but when I got out of bed Saturday morning my ankles and toes were swollen. Sitting or elevating didn't seem to make a difference. However, when I woke up Sunday morning they were back to normal but as soon as I stood up, walked to the bathroom they were swollen. Has anyone else experienced this? I am seeing my GP on Wednesday? Thanks.
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Paisley58
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Sorry to hear you are having so many problems with fluid in your legs. Keep in touch with your medical team and let them know what's happening in case you need further investigations.
In the meantime it looks as if you are going to spend a lot of time with your feet elevated! So read books, listen to music, listen to the radio - lots of interesting things on the radio I've found during the last two months not able to breathe much - and I find the birds have entertained me too.
Gosh that sounds uncomfortable - poor you! I'm on Truxima, a Rituximab biosimilar but I've not had anything like that happen to me. I think you should contact your nurse for advice. Hope you get it sorted soon.
Hi, I have been on Rituximab for around 6 years and have had many infusions, it has been a great help to me too. A few weeks before Christmas I was having terrible pain in my ankle and it went up into my shin and I could hardly walk, I had to use crutches. It was so bad that I was in tears with the pain (you can see my posts on here) anyway I had another infusion a couple of day before Christmas and it is only now that the pain has eased, I still have swelling in my leg and ankle, the leg looks more pink that the other one. I have an appointment with arthotics tomorrow and an appointment next week for an MRI Scan. I have had x-rays and have been told it is Osteo arthritis in my ankles which I thought strange, especially now that the pain has lessened, I feel it is definitely the RA. I have never thought of it being the riruximab and the fact it feels a lot better now I am thinking it was perhaps a flare up. I will see what the MRI shows. Hope you get some relief soon and are able to continue with the rituximab. You say that your liver results are showing something. Are you on methetrexate? I am supposed to take it but decided not to and up til now my liver has been ok. Hope things get better soon for you xx
Oh my hope things improve soon. Used to be on a MTX but my stomach and liver couldn't tolerate it so changed to Leflumide. So painful to walk. Still waiting for heart appt, liver results not back yet and GP has referred me to vascular incase it's a blockage in my legs. So a very frustrating waiting game 😒
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