Search
Search
About
Log in
Join
Experiences with
Stem cell and bone marrow transplants
Posts
Communities
3,780 public posts
Filter results
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
3 years ago
Help for those who need a kidney transplant
From a nonprofit organization: www.LKDN.org a Free online program that shows you how others have achieved a successful living kidney transplant experience. Having Your Kidney Donor Find YOU! www.havingyourkidneydonorfindyou.org Information developed by a 2-time kidney transplant recipient.
From a nonprofit organization: www.LKDN.org a Free online program that shows you how others have achieved a successful living kidney transplant experience. Having Your Kidney Donor Find YOU! www.havingyourkidneydonorfindyou.org Information developed by a 2-time kidney transplant recipient.
hmysel
in
Kidney Transplant Patient Support
3 years ago
Joint Committee on Vaccination and Immunisation (JCVI) advice on third primary dose vaccination
cell
transplant
in the previous 24 months those who had received a
stem
cell
transplant
more than 24 months ago but had ongoing immunosuppression or graft versus host disease (GVHD) persistent agammaglobulinaemia (IgG < 3g/L) due to primary immunodeficiency (for example, common variable immunodeficiency
cell
transplant
in the previous 24 months those who had received a
stem
cell
transplant
more than 24 months ago but had ongoing immunosuppression or graft versus host disease (GVHD) persistent agammaglobulinaemia (IgG < 3g/L) due to primary immunodeficiency (for example, common variable immunodeficiency
crashdoll
in
Lung Conditions Community Forum
3 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Vaccine hesitation
As some who has had a liver transplant and on immunosuppressants obviously and also having had a portal vein thrombosis I’m reluctant to have the covid19 vaccine As reported early on in this “pandemic” certain vaccines were and still are responsible for clotting, besides the clotting issue the fact
As some who has had a liver transplant and on immunosuppressants obviously and also having had a portal vein thrombosis I’m reluctant to have the covid19 vaccine As reported early on in this “pandemic” certain vaccines were and still are responsible for clotting, besides the clotting issue the fact
Rockefeller20
in
British Liver Trust
3 years ago
Feeling a bit Hopeless
I have been on the lung transplant list for 18 months. I had one dry run 4 months ago, but I am wondering if I will ever get the call. Transplants are low, party because of Covid and only 30% of people on the list received a transplant in the year up to March, according to latest statistics. This has
I have been on the lung transplant list for 18 months. I had one dry run 4 months ago, but I am wondering if I will ever get the call. Transplants are low, party because of Covid and only 30% of people on the list received a transplant in the year up to March, according to latest statistics. This has
mary1956
in
Lung Conditions Community Forum
3 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
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
3 years ago
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
Three and a half years with Mantle cell lymphoma
As it had already spread from my lymph nodes to multiple organs I was immediately admitted to hospital and began six rounds of Nordic protocol chemotherapy, followed by a
stem
cell
bone marrow
transplant
. After my transplant I had two years of Rutiximab infusions ever quarter.
As it had already spread from my lymph nodes to multiple organs I was immediately admitted to hospital and began six rounds of Nordic protocol chemotherapy, followed by a
stem
cell
bone marrow
transplant
. After my transplant I had two years of Rutiximab infusions ever quarter.
GT97
in
CLL Support
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
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
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
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
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
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
1
...
42
43
44
...
100
Next page
10
20
30
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
British Liver Trust
708 results
Lung Conditions Community Forum
459 results
Kidney Transplant
440 results
View top 10 communities
Sort by
Most Relevant
Newest