Patients Castleman disease

What Castleman disease treatments have you tried? Have you had side effects?

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Courtney_J

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25/06/2020 at 00:00

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Courtney_J

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

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

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Hi everyone,

How are you doing? emoticon cute

As you know, there is a broad range of treatments for CD depending on the type, and with each treatment may come a variety of side effects.

Have you had any side effects from your CD treatment? Which treatments have you tried? Have the side effects subsided with time, or do you still have them? Have you changed treatments because of the side effects?

Feel free to share your experiences and opinions here!

Take care,

Courtney

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RhettB

10/07/2020 at 14:53

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RhettB

Last activity on 25/11/2022 at 10:38

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10 comments posted | 8 in the Castleman disease Forum

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@Courtney_J My brother's CD is in multiple lymph nodes in his body, so an operation wasn't really considered I don't think. For now he's taking a biological therapy and at first he had some abdominal pain but it went away as the injections continued. He's having a bit of weight gain too but we're not sure it's related to the biologic.

What Castleman disease treatments have you tried? Have you had side effects? https://www.carenity.co.uk/forum/castleman-disease/treatments-for-castleman-disease/side-effects-of-castleman-disease-treatments-3509 2020-07-10 14:53:33

friedegg

10/09/2020 at 11:41

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friedegg

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

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17 comments posted | 15 in the Castleman disease Forum

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I've been put on steroids and tocilizumab injections to try to shrink the lymph nodes. I had terrible headaches at first and some allergy-like symptoms but they've gone away. I hoping it's effective, I've read in places that sometimes it doesn't work for iMCD patients

Pibby22

11/11/2020 at 04:17

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Pibby22

Last activity on 13/05/2021 at 00:54

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8 comments posted | 7 in the Castleman disease Forum

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Pibby22 here,I an newly diagnosed with mcd,have just started a 6 month trial with Siltuximab infusions every 3 weeks,I am wondering how much this drug costs in the UK to pensioners,does anybody know.

PennyLane

16/12/2020 at 17:51

PennyLane

Last activity on 07/09/2021 at 12:24

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9 comments posted | 9 in the Castleman disease Forum

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@Pibby22 I'm not sure of the cost, I know it's been approved for Castleman but I'm not on it. I'm on tocilizumab. I've heard it's effective, how are you feeling?

Pibby22

16/12/2020 at 22:30

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Pibby22

Last activity on 13/05/2021 at 00:54

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8 comments posted | 7 in the Castleman disease Forum

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Hi Penny lane,I have been on Siltuximab for 4 infusions at 3 week apart,have had no side effects and my lymph nodes have gone down.I have been feeling very well, back to walking on beach every day,and doing normal housework,so it’s working for me.Merry Xmas to you and keep safe.

What Castleman disease treatments have you tried? Have you had side effects?

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