Castleman’s disease in the UK: What are your advices?

@krystalrosen I understand very well that feeling of being completely lost or abandoned. I hope you get the answers you're looking for.

@Dhagggart how did you CT scan go?

my ct scan went good thanks still in remission so the sultuxamab is still doing me good altho everytime i get the scan my eyes swell up and really sting for a few days but its worth it , how are things going for you ?@friedegg hope you are doing ok , and @krystalrosen hope you are doing ok and you can get the answers and treatment soon , god bless and take care and good luck i pray you get the right treatment so you can get back to feeling human again

I’m waiting on another pet scan, there’s something in my colon that needs investigation now too. I’ve been put on Prednisolone now but as of yet symptoms are the same! Hope you are feeling well

@krystalrosen i hope you get some news about treatment after your pet scan, ohh prednisolone i was on them for a while at a high dose and i have to say they did help alot but im very happy to be off them as they are so strong, god bless and i hope you get answers soon

I was diagnosed with idiopathic multicentric Castleman disease August 2024 it felt like a life time but I only started showing symptoms in January of that yr.

leading up to my diagnosis, I will say it was horrific. It all started in my kidneys. hospital at first dismissed my symptoms as a simple back problem and my first visit to A&E I was left rolling on the floor as I was not able to get bed I felt like I was discriminated by the nurses on duty that day I would simply describe it as one of the worst days of my life so after eight hours, I discharged myself and went home to at least get comfort in my own bed, unfortunately, the pain got worse so I opted to go to a different hospital and they found I had a kidney infection are so they thought I was giving a prescription of antibiotic sent home.

antibiotics seemed to work for a couple of weeks after that symptoms came back. I was basically back-and-forth to the doctors and given in total over a few months eight courses of antibiotics included what was suspected to be chest infection, which later after an x-ray showed up as a mass in my chest which resulted in returning to hospital after a week they give me a preliminary diagnosis of lymphoma later on after more tests there was no cancer showing anywhere in my body for months, I was back-and-forth to the hospital in this time there was no clarity whatsoever until one doctor suggested this could be Castle-mans so after a number of biopsies were attempted over a few months fortunately the second one confirmed I had Castle-man’s unfortunately over time it took my organs were starting to become very dysfunctional problems with liver kidneys lungs heart and fluid in my stomach and legs night sweets and bad fatigue the hospital were simply treating my symptoms prior to my diagnosis I was drained to 11 L to 8 L a week before I was started on a high dose of steroids and siltuximab every 3 weeks was introduced in late August 2024 I will say the treatment has been going pretty well. I feel I still have mild symptoms and a host of new problems such as a thyroid problem inflammation throughout my stomach tired shoulders and legs and pain in the kidneys I will say I am being positive and I am in no way as sick as I was this time last yr I hope this helps and if anyone would like to chat please message me thank you and take care Paul