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Stem cell and bone marrow transplants
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Does anyone know whether I will experience steroid withdrawal even though I’m on tocilizumab?
I have tapered down (from 40mg) to 5mg pred. I began a course of weekly TCZ injections 8 weeks ago. I need to stop taking the pred. I’m wary as I have experienced steroid withdrawal on a prior occasion. I am debating whether to keep taking it over Christmas or to stop now… and I’m wondering whether:
I have tapered down (from 40mg) to 5mg pred. I began a course of weekly TCZ injections 8 weeks ago. I need to stop taking the pred. I’m wary as I have experienced steroid withdrawal on a prior occasion. I am debating whether to keep taking it over Christmas or to stop now… and I’m wondering whether:
Erikaknitssocks
in
PMRGCAuk
2 years ago
Open up to conversations: Hear from a transplant surgeon
In order to feel empowered and safe, whilst navigating our own heath journeys, it is also important we remember we are being looked after by humans - the consultants, nurses, surgeons, anaesthetist - we are all in this human experience together. You may find this conversation with kidney transplant
In order to feel empowered and safe, whilst navigating our own heath journeys, it is also important we remember we are being looked after by humans - the consultants, nurses, surgeons, anaesthetist - we are all in this human experience together. You may find this conversation with kidney transplant
WhollyAligned
in
Kidney Transplant Patient Support
3 years ago
“I think we’ll cure leukemia in my lifetime”
Targeted therapy improved that to 35% to 40%, but patients had to receive a
stem
cell
transplant
, which isn’t easy. But I’ve led research on a drug called ponatinib in combination with chemotherapy, and we’ve seen the survival rate jump to 80% without a transplant.
Targeted therapy improved that to 35% to 40%, but patients had to receive a
stem
cell
transplant
, which isn’t easy. But I’ve led research on a drug called ponatinib in combination with chemotherapy, and we’ve seen the survival rate jump to 80% without a transplant.
Manouche
in
MPN Voice
3 years ago
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The "Sally Painting Story"
For many people, the name Sally Painting may be unknown. But Sally was an inspiration for so many people. She was the first-ever liver transplant patient to later become a nurse. She even worked on the same liver ward at the QE Hospital, Birmingham where she was once a patient. At the age of 13, Sally
For many people, the name Sally Painting may be unknown. But Sally was an inspiration for so many people. She was the first-ever liver transplant patient to later become a nurse. She even worked on the same liver ward at the QE Hospital, Birmingham where she was once a patient. At the age of 13, Sally
Richard-Allen
in
British Liver Trust
3 years ago
Is anyone familiar with Saint Thomas hospital out of Murphysboro Tennessee for Kidney transplant?
I am Researching Saint Thomas hospital out of Murphysboro Tennessee for kidney transplant. I see that they are relatively close to me, they are in my insurance network, short wait time and they are a Medicare approved facility. The reviews online are average. Does anyone have actual knowledge or
I am Researching Saint Thomas hospital out of Murphysboro Tennessee for kidney transplant. I see that they are relatively close to me, they are in my insurance network, short wait time and they are a Medicare approved facility. The reviews online are average. Does anyone have actual knowledge or
Hidden
in
Kidney Transplant
3 years ago
Liver Transplant – Letter to Donor family – totally gutted.
I had my liver transplant back in 2016 due to alcohol abuse and Hepatocellular Carcinoma. For a good 10-months post-transplant, I suffered terribly with survivors guilt and PTSD. I honestly felt that writing that letter to the donor family was an honest reflection of my gratitude. It helped me to deal
I had my liver transplant back in 2016 due to alcohol abuse and Hepatocellular Carcinoma. For a good 10-months post-transplant, I suffered terribly with survivors guilt and PTSD. I honestly felt that writing that letter to the donor family was an honest reflection of my gratitude. It helped me to deal
Richard-Allen
in
British Liver Trust
3 years ago
DNA mutations impacting liver disease patients identified by Wellcome Sanger Institute and Cancer Research UK Cambridge Institute
From time to time I like to post up any interesting liver research that’s recently been concluded, that may be of interest to others. When I developed end-stage liver disease back in 2015, I became diabetic. No one could tell me why, or even which type of diabetes I had. The diabetic doctor told me it
From time to time I like to post up any interesting liver research that’s recently been concluded, that may be of interest to others. When I developed end-stage liver disease back in 2015, I became diabetic. No one could tell me why, or even which type of diabetes I had. The diabetic doctor told me it
Richard-Allen
in
British Liver Trust
3 years ago
Tocilizumab cessation.
I posted recently concerning the fear and dread the withdrawal of this excellent treatment causes myself and fellow sufferers of GCA/PMR. To further update I am a constituent of Sajid David and have therefore e-mailed him to express our shared distress at having this treatment given and then taken away
I posted recently concerning the fear and dread the withdrawal of this excellent treatment causes myself and fellow sufferers of GCA/PMR. To further update I am a constituent of Sajid David and have therefore e-mailed him to express our shared distress at having this treatment given and then taken away
AncientMariner
in
PMRGCAuk
2 years ago
Looking for advice, sharing my story.
Hello everyone. I've been diagnosted with chronic liver disease in September 2021 after long battle with my GP that something is qrong woth me and done private blood tests and scans by my own.Then my diagnosis stuck on the way to clinc becouse of COVID. Hard to say what kind of disease is as my doctor
Hello everyone. I've been diagnosted with chronic liver disease in September 2021 after long battle with my GP that something is qrong woth me and done private blood tests and scans by my own.Then my diagnosis stuck on the way to clinc becouse of COVID. Hard to say what kind of disease is as my doctor
Bazinga89
in
British Liver Trust
3 years ago
Stressed ill be taken off active list
I have been listed for a third kidney transplant and have had two transplant evaluations in the last 6 months ..I have a third Nov 2nd, along with a cardiac stress test ..I have multiple appointments scheduled every week for the next 4 months, all pre transplant testing. Yesterday I had a virtual appointment
I have been listed for a third kidney transplant and have had two transplant evaluations in the last 6 months ..I have a third Nov 2nd, along with a cardiac stress test ..I have multiple appointments scheduled every week for the next 4 months, all pre transplant testing. Yesterday I had a virtual appointment
Calebzztop
in
Kidney Transplant
3 years ago
New to liver disease
Hi everyone. I have been diagnosted with chronic liver condition probably NAFLD/Autoimmune Liver Disease as my blood test suggest so. I got appointment with specialist about my liver biopsy results and it says :The features are of a steatohepatitis with severe fibrosis. The morphology in these cores
Hi everyone. I have been diagnosted with chronic liver condition probably NAFLD/Autoimmune Liver Disease as my blood test suggest so. I got appointment with specialist about my liver biopsy results and it says :The features are of a steatohepatitis with severe fibrosis. The morphology in these cores
Hidden
in
British Liver Trust
3 years ago
Stopping Tocilizumab
My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through
My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through
AncientMariner
in
PMRGCAuk
2 years ago
Heart Failure Diagnosis
Can anyone help? I'm 32 and have been diagnosed with Severe Dilated Cardiomyopathy, and currently undergoing tests to see if I'm eligible for a Heart Transplant. To say i'm coping would be a lie as I can imagine for anyone with this news it's really hard to get my head around and i'm struggling not only
Can anyone help? I'm 32 and have been diagnosed with Severe Dilated Cardiomyopathy, and currently undergoing tests to see if I'm eligible for a Heart Transplant. To say i'm coping would be a lie as I can imagine for anyone with this news it's really hard to get my head around and i'm struggling not only
LukeBarnes88
in
British Heart Foundation
3 years ago
Pig kidney transplant to human
https://www.yahoo.com/news/u-surgeons-successfully-test-pig-230035397.html?.tsrc=fp_deeplink
https://www.yahoo.com/news/u-surgeons-successfully-test-pig-230035397.html?.tsrc=fp_deeplink
kimosabi1961
in
Kidney Transplant
3 years ago
We love pig. U.S. surgeons successfully test pig kidney transplant in human patient.
https://www.reuters.com/business/healthcare-pharmaceuticals/us-surgeons-successfully-test-pig-kidney-transplant-human-patient-2021-10-19/
https://www.reuters.com/business/healthcare-pharmaceuticals/us-surgeons-successfully-test-pig-kidney-transplant-human-patient-2021-10-19/
Jumbo1
in
Kidney Disease
3 years ago
Donor request
Pl help me to reach out to a donor of O positive blood group. My nephew who is just 23 and a doctor hinself is in urgent need of kidney transplant.
Pl help me to reach out to a donor of O positive blood group. My nephew who is just 23 and a doctor hinself is in urgent need of kidney transplant.
sumaiyer
in
Kidney Donation
3 years ago
Steroid sparers
I posted a few weeks ago to ask if anyone had been given Mycophenolate so Tocilizumab could be withdrawn. I only got a couple of replies so I guess not many have. I gave them a try and felt as though I was back to pre diagnosis. Rheumatologist said to try again more slowly. Same again. Not for me. I
I posted a few weeks ago to ask if anyone had been given Mycophenolate so Tocilizumab could be withdrawn. I only got a couple of replies so I guess not many have. I gave them a try and felt as though I was back to pre diagnosis. Rheumatologist said to try again more slowly. Same again. Not for me. I
marantha
in
PMRGCAuk
2 years ago
Antibody infusions?
I know a young man in my community who received a kidney transplant a few years ago. I have heard thru mutual friends that he has been diagnosed with covid and in the hospital not doing too well. Anyway, this brings me to think about treatments...are transplant patients able to get the antibody infusions
I know a young man in my community who received a kidney transplant a few years ago. I have heard thru mutual friends that he has been diagnosed with covid and in the hospital not doing too well. Anyway, this brings me to think about treatments...are transplant patients able to get the antibody infusions
Transplant09
in
Kidney Transplant
3 years ago
Missed immunosuppressant dose
Hi all! I'm hoping you can put my mind at ease. I was blessed with a kidney transplant 2 months ago, and for the first time forgot to take one of my 12hr doses of tacrolimus and Myfortic last night. I took my meds as usual this morning however. I'm terrified of an acute rejection episode. What is the
Hi all! I'm hoping you can put my mind at ease. I was blessed with a kidney transplant 2 months ago, and for the first time forgot to take one of my 12hr doses of tacrolimus and Myfortic last night. I took my meds as usual this morning however. I'm terrified of an acute rejection episode. What is the
mikeeboy723
in
Kidney Transplant
3 years ago
Urgent need for kidney transplant O+ve blood group
Dear friends, Kindly help me out for reaching out to a donor for my nephew who requires kidney transplant on very urgent basis. Blood group O +ve.
Dear friends, Kindly help me out for reaching out to a donor for my nephew who requires kidney transplant on very urgent basis. Blood group O +ve.
green1973
in
Kidney Transplant
3 years ago
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