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Walshy2016
Comments
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Thanks Becky, Did the rituximab effect your counts at all? Did you continue the IVIG while having this over the 4 weeks? Are you now on IVIG regularly to help with the aftereffects of the rituximab? It's now the second week of him being on steroids and I think the rate of haemolysis has slowed a small amount but I think he…
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Update. Started steroids rate of transfusions seems to have slowed a bit. Also had ivig onec this week. They have only given two doses of this a week apart each and are not planning on giving more due to cost they said, is this normal? Also was told by one consultant ritixumab could lead to problems with cmv reactivation…
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So, They think it is now autoimmune. He is needing lots or blood transfusions, has had second dose of Ivig this week and has just started steroids today. Fingers crossed this works. They are bit reluctant to start ritixumab due to his previous problems with cmv activation, needing ganciclovir which suppressed his marrow so…
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They are thinking he may have developed antibodies either to the graft cells ( red cells graft is producing) or might be in response to some he has had transfused, depending on results they are thinking if giving immunoglobulins. Has anyone had this before?
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Thank you both, his Hb is dropping quicker than it was over the last 6 months post transplant. He can normally stretch a week between transfusions but now they drop to low 60s even 50s after two units two days ago, He feels pretty rubbish. The team don't seem to know why it is happening still awaiting some test results,…
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Thanks rob, thanks for the advice, I hope your does start to fade out soon. His swab so far are clear, most of ulcers are healing now, it's hard to know yet I think. His cmv level also went up again this week so is back on valganciclovir yet again! It's really annoying as it drops his counts being on this so hoping it…
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Thanks Greg, they took some swabs today, have to wait for results. Hopefully it is just an easily treatable virus causing his symptoms. Leah
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Hello, he is doing ok. He is now day 104. His counts are still very low because he has been out on valganciclovir for preventing the cmv reactivation. This means he is having to have blood and platelets still every few days. He is still at home and putting weight on eating well. They have started to reduce his ciclosporin…
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Thank you both, they are now bringing him in to hospital thinks he might have acute gvhd of the gut so will be In hospital for fluids and further investigations. This might explain the weight loss and vomiting he has been having. I will ask about his chimerism too. Hopefully he will start to feel better soon.
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Hi Steve, Thank you for the support. He did have day zero yesterday, all went well. He is day 1 today mainly sleeping today. Has been bit nauseous earlier but has now settled. They are going to place the NG tube for mucositis today just in case it gets painful. He is a positive person and has fighting spirit in him,…
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Thank you guys for your replies. We are keeping the Hickman in for him to have his cells, but the medical team want to take it out the following day. They have allowed him to have a picc line and he is happy to have cannulas also, this is the fourth infection in last few months, this one has only been in for two weeks. We…
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Thank you Steve, he has had his line out today and is ready to come home before going back in for transplant. We are feeling positive about things and especially as I have been reading many positive stories on the forum, this does help. I will keep you updated about his progress. Leah