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It's me again, Well the Mabthera - Rituximab treatment didn't go so well....after two treatments something went dreadfully wrong....I was hospitalised and my haemoglobin went down to 54....blood transfusion after blood transfusion in Rocky hospital followed by a trip to Intensive Care in Rocky and Royal Flying Doctor flight down to Brisbane...Can't remember about a week and half of my life as they put me on amnesia drugs in Intensive Care....they had to drain my lungs of fluid which had some kind of infection like pneumonia and the doctors are still baffled to know what caused it. After waking up in Brizzy with no idea where I was they couldn't treat the AIHA or give me any more blood once it (haemoglobin) had creeped up to 70 as otherwise I would just start haemolising rapidly again. They had to treat the infection first. After about a week in the Mater hospital the infection subsided and they could start treating the AIHA with prednisone yet again (100mg)...the very drug the doctor was trying to get me off in the first place with trialing the mabthera. They now have me on a combination of Cyclosplorin a drug they give to transplant patients, prednisone weaned to 50mg now and imuran plus many more tablets to combat the side effects of the prior mentioned ones. They made me stay in hospital for 4 weeks this time and then stay down in a motel close to the hospital for a following 2 as an outpatient. But I have good news and its about time as my family and I have been to hell and back this time. It seems that the cyclosplorin is working as my haemoglobin has slowly but surely crept its way up to 115. I'm just worried about when they start tapering the steroid yet again. They can't keep me on it cos I'm 24 and the doctor reckons I'm gunna be a frail old lady if he doesn't get me off it.

I've had a splectomy, been treated with prednisone and imuran. They checked this time to see if the spleen had re-grown it hadn't. They still haven't ruled out giving me the other 2 doses of rituxan/mabthera before coming home. I was so hopeful in that drug Angelindisguise and think I would still give it a go if this doesn't work out in the long run. Has anyone had to go through all these different treatments?????? Apparently there are other things they can try still but may effect my fertility...So I'm now thinking seriously about getting some eggs frozen....

I was living a normal life...a stressful one at that being a teacher. Was wondering if anyone else was going through extrememly stressful periods in their lives when they relapsed of were diagnosed as I was.....I just wanna live a normal any of you fellow sufferers live active lives with full time jobs?

This time its floored me like never before I'm off work for the semester even though my blood counts are up...I'm was seenig a physciatrist in Brisbane and am on medications to help sleep and combat the depression. Has anyone been through all these treatments?

If anyone wants to chat about their history with this disease please...I'm feeling a little like the only one out there who tried everythin and now more.

I know I should be happy the drug is working.....but soo scared about tapering the steroid again.

Looking forward to chatting with anyone.


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