How are u all doing? As the title of my post say am about to start a new treatment on monday called beliumumab or belysta which is a biological treatment. On tuesday i was able to get an explanation of the use of the term chemotherapy in relation with lupus treatment. Good enough my mum was there to listen bcos she has this wierd attraction to the term chemo. I have had lots of treatments life mycophenlat, cyclophosphomide, azotiaprine, rhetoximab, iloprost, flolan, metrothriaxte. I feel uncomfortable with the word chemo . . I tried her to use infusion bcos immunsuppressant is a bit of a touge twister. But no, whenever i go into hospital for treatment the news is i ve gone 4 chemo. It drives me nuts.
The main reason for this post is about the belysta, pls how is it for those that have had it. I have accepted to enroll in an nhs register to monitor the progress and effect of the treatment. Pls any feedback will be appreciated.
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ijeasike
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Hi I have had about 4 lots of bilimumab now .I just tell people I'm having my next infusion for my lupus.I now have it once a month and I'm at the infusion ward for about 3 &1/2hrs from the time I arrive till I leave to go home. Always get a lift home as not allowed to drive for remainder of the day.Hope you're getting on ok with the bilimimab infusions and your mum has stopped referring it to chemo .
😂 she now uses the word infusion. But we have some friends in church who she had already said chemo to. So when i go for the infusion they always ask if i had gone for chemo. I just try to tell them this is a biological treatment.
I think my treatment is going well. My bloods are responding well my doctor says. My fingers are nolonger ulcerating. I now take one infusion every month. I go with my mum but i usually drive and then rests the next couple of days until i feel strong enough to get out of bed. I am looking foward to going to d gym and i meet the trainer 2day and i told him my condition and i will only do non-weight bearing exercise. I swim and do hydrotherapy but because of my raynauds its quite an effort to change, get my fingers wet. I love swimming but sometimes i feel like doing smthelse. I told d trainer am just here to take my time gradually at my pace and do some non strenuous exercises. I am abit concerned about my knee but lets see how it goes. All in all i feel better than i felt last year. I thank God for that.
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