Patients Castleman disease
How do you feel about your CD treatment?
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Welcome to your Treatments for Castleman disease forum here on Carenity! This space is dedicated for you to share your questions, opinions, and advice on CD treatments with other patients like yourself!
Let’s talk about CD treatments! As you know, treatments for CD can range from surgery to chemotherapy, to chimeric protein drugs (like Siltuximab), or even conventional anti-inflammatory (corticosteroids) and immunosuppressive therapies.
What treatments are you taking for your CD? What do you think of them? Are they working for you? Feel free to share here!
@Courtney_J I'm not sure if I can reply to this yet. I've only started treatment a few months ago and I wasn't really give a choice with it. CD is so rare and severe that I just listened to what the doctor said and went along with it. I'm not a doctor and there's not a lot of information out there so I can only put my faith in the doctors and medical team that they know what they're doing
i have been on treatment for about a year and half and im thankful im feeling near normal after 2 years of hell , it was the first treatment they gave me to see how it would go and so far so good im on siltuxamab and been told im in remission so just now we are talking about adding an extra few weeks between treatment , fist was every 3 weeks now is every 4 and after my next treatment if my bloods are looking good then we will try every 6
@Dhagggart That's fabulous to hear you're doing so well! I agree with you, I haven't been at it with treatment for as long as you but what I've seen so far has been a nightmare. You've given me hope for what's ahead.
im happy i could help and can only speak from my own experience and tell you its like night and day from this time even a year ago when i was still getting infections easy and short stays in hospital to sort it out but now things are going good so good luck i hope you can feel the benefits of the treatment soon and the bad times are just a memory , god bless
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