NRAS
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Rituximab

Went for the second part of my infusion yesterday and my blood pressure was high and my heart rate. The first part of the infusion left me with this and they kept me back 2 hours and took an ECG. Anyway, in I went yesterday not having slept, terrible weather to drive through and my anxiety level was through the roof. It was decided that I could not be given it and was sent home and told to make an appointment with my GP. Miracles of miracles I actually managed to get in at 8.00am this morning. Blood pressure had dropped by 30 points. I had a monitor fitted last year for 24 hours and my BP was only 2 points away from normal.

I was given the infusion at a quicker rate last time because the manufactures protocol said that it could be given quicker. So now I have been put on Ramapril and told that I cannot take Naproxen if I have a flare up. Have put a call into my rheumatologist department and am waiting a call back. I need to know if I will be given the second part of the infusion as I am only taking sulphasalaziene which is not enough to control the condition. I need to know an alternative to Naproxen if I need it.

I don't know about anyone else but I sometimes feel I know more about the medications at times than they do as I try to keep abreast of treatments old and new and any changes. I am sick and tired of having to push for everything. I sometimes feel staff have no empathy and just want you in and out as quickly as possible. I did have a fantastic specialist nurse who unfortunately left. I am tired, achy, having flare up, stiffness, you all know how it goes. Just needed a whinge.

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That sounds awful. I feel for you and I hope they get it sorted. Did they suggest trying a different infusion.

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All they said was there were different treatments available. Have now spoken to the rh dept and they won't do anything until after I see my GP again in two weeks. Then I have to contact them so they can make a decision. I am so stiff at moment legs and hands. I do tnsuppose the cold weather is helping. Guess I have no choice but to cope as best I can. Have taken some paracetamol which I am allowed. Sometimes i wish the nurses could live for a day with what we experience so that they could be more understanding.

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I was just wondering as Ritux didn't suit me and I got swapped to Tocuzilumab (TCZ ) which has been terrific. Obviously the docs will decide but hood luck xx

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Hello, sorry to read this, it’s just another one of the upsetting things we have to deal with, let alone coping with the condition, dealing with the medications and complete ignorance about our condition, it all gets you down unstandably sometimes. Keep smiling we are all here to support you coz we get it!! 😊 xx

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