Patients Castleman disease

Siltuximab (Sylvant) for Castleman disease: Experiences, side effects, opinions

76 views
16 times supported
9 comments

Courtney_J

Community manager

02/04/2021 at 09:47

Good advisor

Courtney_J

Community manager

Last activity on 13/10/2022 at 16:47

Joined in 2020

1,280 comments posted | 16 in the Castleman disease Forum

10 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Committed
Explorer
Evaluator

View profileView Add a friendAdd Write

Hello everyone,

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

Feel free to share with us here!

Take care,
Courtney

All comments

Hender65

03/04/2021 at 01:10

Hender65

Last activity on 29/08/2022 at 16:14

Joined in 2021

9 comments posted | 8 in the Castleman disease Forum

Rewards

Contributor
Committed
Explorer

View profileView Add a friendAdd Write

@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.

See the signature

John Henry

Siltuximab (Sylvant) for Castleman disease: Experiences, side effects, opinions https://www.carenity.co.uk/forum/castleman-disease/treatments-for-castleman-disease/siltuximab-sylvant-for-castleman-disease-experiences-side-effects-opinions-4095 2021-04-03 01:10:28

Mustang

12/04/2021 at 13:54

Mustang

Last activity on 10/11/2024 at 17:53

Joined in 2021

1 comment posted | 1 in the Castleman disease Forum

Rewards

Explorer

View profileView Add a friendAdd Write

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.

Dhagggart

21/04/2021 at 18:55

Good advisor

Dhagggart

Last activity on 01/09/2024 at 15:29

Joined in 2021

18 comments posted | 14 in the Castleman disease Forum

Rewards

Good Advisor
Contributor
Explorer
Evaluator

View profileView Add a friendAdd Write

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

Hender65

22/04/2021 at 09:30

Hender65

Last activity on 29/08/2022 at 16:14

Joined in 2021

9 comments posted | 8 in the Castleman disease Forum

Rewards

Contributor
Committed
Explorer

View profileView Add a friendAdd Write

@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??

John

See the signature

John Henry

Dhagggart

22/04/2021 at 10:06

Good advisor

Dhagggart

Last activity on 01/09/2024 at 15:29

Joined in 2021

18 comments posted | 14 in the Castleman disease Forum

Rewards

Good Advisor
Contributor
Explorer
Evaluator

View profileView Add a friendAdd Write

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

Hender65

24/04/2021 at 15:54

Hender65

Last activity on 29/08/2022 at 16:14

Joined in 2021

9 comments posted | 8 in the Castleman disease Forum

Rewards

Contributor
Committed
Explorer

View profileView Add a friendAdd Write

@Dhagggart

Thanks so much for your response I will let you know when I get my pet scan and a treatment plan is decided.

stay strong

John

See the signature

John Henry

Dhagggart

25/04/2021 at 15:39

Good advisor

Dhagggart

Last activity on 01/09/2024 at 15:29

Joined in 2021

18 comments posted | 14 in the Castleman disease Forum

Rewards

Good Advisor
Contributor
Explorer
Evaluator

View profileView Add a friendAdd Write

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

David

friedegg

28/04/2021 at 14:44

Good advisor

friedegg

Last activity on 21/10/2022 at 02:54

Joined in 2020

17 comments posted | 15 in the Castleman disease Forum

Rewards

Good Advisor
Contributor
Messenger
Explorer

View profileView Add a friendAdd Write

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.

Dhagggart

29/04/2021 at 21:55

Good advisor

Dhagggart

Last activity on 01/09/2024 at 15:29

Joined in 2021

18 comments posted | 14 in the Castleman disease Forum

Rewards

Good Advisor
Contributor
Explorer
Evaluator

View profileView Add a friendAdd Write

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

david h

Siltuximab (Sylvant) for Castleman disease: Experiences, side effects, opinions

All comments

Give your opinion

What do you think about the Carenity Forum and community?

What are your expectations from Carenity and what would you like to see in the future?

How were you diagnosed?

Members are also commenting on...

Articles to discover...