Rutiximub infusion.

[mitty]

Hi all,I've been on hydroxychlourine for Lupus for 10 years or so but seems to have run its course as I was very ill from summer of 2023. Rheum then changed medication to mycophenolate but it doesn't seem to be working even after increasing dose to 1500mg per day and in conjunction with prednisolone. I've still bad wrist and thumb pain. Can't even make a sandwich. My rheum has now mentioned rutiximub infusions. Myself and my partner are now mulling it over as other meds aren't working. Anyone on rutiximub. Good or bad experiences. Any thoughts.

Thanks Mitty.

[RAD120]

Hi Mitty, I had my first two infusions last November. After the first few weeks I really started to feel like the old me. I had so much more energy and the brain fog was a lot better. Three months on I would really like another set of infusions. I had not realised that it was really helping my joints as well but now the Rituximab is wearing off I realise it was helping all my problems. I'm looking forward to the next set of infusions. I would say the first week or so after the infusions were a struggle but so worth it.Best wishes, Debbie

[mitty in reply to RAD120]

Thanks Debbie. Glad to hear it worked for you. My energy levels are terrible at the minute.

[RAD120 in reply to mitty]

I try to remind myself that it will improve at some point. I am in a lot of pain at the moment so I just try to go with it, knowing it a couple of days the pain will ease its intensity. Listen to your body, you cannot shake off the tiredness, so rest up and let yourself mend x

[SurferGuy]

Hi Mitty, a good few years ago my Lupus was pretty bad. After a couple of infusions, the difference was amazing. The joint pains subsided as did the fatigue. I felt so good I had to remember to not over do it.

I started a new round of infusions last week due to severe Chilblains which have last almost 6 months. I just hope the rituximab works for these.

[mitty in reply to SurferGuy]

Thanks Suferguy. All my replies seem very positive. Hope all goes well for me.

[cathie]

Happy St Patricks's day. I'm in Scotland and have been having rituximab for about ten years. Its been fine, the gaps between infusions have been getting longer but I struggle after about 7 months. We get antihistamine + steroid infusion before the ritux which takes around 3-4 hours to drop through. I come out high as a kite from the steroids usually - and its nice to have your infusion which lasts nearly a whole year. You do have to be more careful about covid though as the ritux reduces the impact of the vaccine. Hope it works as well for you as it has for me, Cathie

[mitty in reply to cathie]

Thanks Cathie