Patients Castleman disease
Siltuximab (Sylvant) for Castleman disease: Experiences, side effects, opinions
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How are you doing?
Are any of you treating your CD with siltuximab (Sylvant®)? If so, what has your experience been like? Have you had any side effects? Is it working for you?
@LukeIan @Wellemma @Sarahjane79 @Caski33 @Sashvin @PennyLane @Micki1559 @Faithforever7 @Linaciccarelli @Pibby22 @georgiana.em_gil @Paddy123 @Alice03 @Jwalbornperales @jjmurry @Mustang @JessicaAli @Bryan123
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@Courtney_J Hello I’m commenting on this Courtney so I can be alerted if anyone that’s in reciept of treatment comments . I did see 2 participants in the discussion elsewhere mentioning this treatment and one said within 3 weeks she was feeling almost normal.
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I am on Rituxan plus steroids since diagnosis 2/20. Meeting with DR this Friday to discuss Siltiximab as I was told I could only take a total of 24 treatments with Rituxan. While this protocol has been successful, I would rather make the change as soon as possible. Will keep all informed about the results of my visit. I am IMCD.
hi there i am getting treated with siltuxamab every 3 weeks just been moved to every 4 weeks and soon to be every 6 weeks if my next blood test is showing up good , and my experience has been good i have had a few set backs with infections when i was also on steroids but now im off those and been told im in remission so i have to say so far so good im well over a year on it
@Dhagggart So happy to hear your getting treatment and it’s finally working I have now finally met with a haematologist and the first stage was they took a load of blood and yesterday I had a bone marrow biopsy ( ouch ). I now await a pet scan in the next 2 weeks and after that I will be given a treatment my biggest fear is I am still losing weight at a tremendous speed. I try with suplimemts and a very high calorie intake to stop this but alas having no luck. The other very noticeable symptom I have is complete breathlessness I can walk 5 yards and that’s me . Are both of these symptoms normal??
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yes i had lost loads of weight at first but didnt notice because of all the fluid but once the fluid got sorted i was dropping like 4 or 5 kg a day untill i hit my base weight i think was around 69kg and that was from 110kg the breathlessness was bad even just standing up was hard for me , good luck i hope you find the right treatment that works for you it dose take a little bit of time at first to find out whats right and then once you get going on a treatment that works you should start to notice a diffrence quite quickly , let me know how you get on
Thanks so much for your response I will let you know when I get my pet scan and a treatment plan is decided.
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thank you and good luck i hope you get the treatment that works for you straight away and then you can get back to feeling better
Thank you all for sharing on this, I'm also meeting with my doctor soon and I'd like to discuss it with him. I'm glad to hear that there aren't any bad side effects, I was so sick at first when I started on tocilizumab.
it was the first treatment i was given and im doing good just now been on it for about a year and a half and no problems so far i hope you can find the right one and start to get your life back , good luck and god bless
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