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Patients Castleman disease
What Castleman disease treatments have you tried? Have you had side effects?
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RhettB
Good advisor
@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.
friedegg
Good advisor
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
Good advisor
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
@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
Good advisor
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.
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Courtney_J
Community managerGood advisor
Hi everyone,
How are you doing?
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