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MIN-102 update: summer 2022
Hi everyone, I am persisting with the min-102 trial and yesterday had my 10th visit. Nothing particularly different about the visit: the usual 6 minute walking and balance trials, the annual MRI scan and echocardiogram and the questionnaires and meeting with a specialist. What I did learn is that Minoryx
Hi everyone, I am persisting with the min-102 trial and yesterday had my 10th visit. Nothing particularly different about the visit: the usual 6 minute walking and balance trials, the annual MRI scan and echocardiogram and the questionnaires and meeting with a specialist. What I did learn is that Minoryx
wilburlois15
in
AMN EASIER
2 years ago
What happens when you end tocilizumab
I have GCA and PMR , plus a few other conditions.. I am on Prednisolone, Azothioprine and tocilizumab . I am getting towards the end of the tocilizumab injections as the aim is to get to 7 mg Pred and I am about to reduce to 9 mgs. The tocilizumab has done wonders with unreadably low CRP and ESR of 3
I have GCA and PMR , plus a few other conditions.. I am on Prednisolone, Azothioprine and tocilizumab . I am getting towards the end of the tocilizumab injections as the aim is to get to 7 mg Pred and I am about to reduce to 9 mgs. The tocilizumab has done wonders with unreadably low CRP and ESR of 3
Caroline2079
in
PMRGCAuk
2 years ago
Wellness poster for my stay at hospital
I am due to have a stem cell transplant and have prepared myself for my stay at the hospital. It’s been suggested that I can decorate my room and can use posters to put on the wall. I wonder if anyone could suggest somewhere online that they would know of that I could find any reasonably priced posters
I am due to have a stem cell transplant and have prepared myself for my stay at the hospital. It’s been suggested that I can decorate my room and can use posters to put on the wall. I wonder if anyone could suggest somewhere online that they would know of that I could find any reasonably priced posters
Kraskie1915
in
CLL Support
2 years ago
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Sct question
Hello friends! I'm using Google translate now. I hope you will understand. I have a question that I can not find an answer to online. It's about stem cell transplantation. If this were to happen at some point in the future, how precise/exact does a match need to be? My parents have different ethnic
Hello friends! I'm using Google translate now. I hope you will understand. I have a question that I can not find an answer to online. It's about stem cell transplantation. If this were to happen at some point in the future, how precise/exact does a match need to be? My parents have different ethnic
Johan2021
in
MPN Voice
2 years ago
Transplant waiting list imminent/Nintedanib feedback
Hi all, Been a while again since my last update. I was hoping to bring you definitive news on the transplant situation but we're not quite there yet as I've still to meet the team to discuss when to go on the transplant list and find out how long my window of opportunity might be. However, the good
Hi all, Been a while again since my last update. I was hoping to bring you definitive news on the transplant situation but we're not quite there yet as I've still to meet the team to discuss when to go on the transplant list and find out how long my window of opportunity might be. However, the good
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
2 years ago
Encouraging Progress
Encouraging Progress in Stem Cell Transplantation . . . https://news.asu.edu/20220512-designer-neurons-offer-new-hope-treatment-parkinsons-disease
Encouraging Progress in Stem Cell Transplantation . . . https://news.asu.edu/20220512-designer-neurons-offer-new-hope-treatment-parkinsons-disease
redhawk1
in
Cure Parkinson's
2 years ago
Disassociated feeling
I'm currently on Tocilizumab for GCA under the direction of a specialist physician. I was on 20mg Pred when I started the Tocilizumab which I have injected every 2 weeks. I'm on my third week right now. I was instructed to reduce Pred 5mg every 2 weeks and reduce again 5mg 3 weeks , which is
I'm currently on Tocilizumab for GCA under the direction of a specialist physician. I was on 20mg Pred when I started the Tocilizumab which I have injected every 2 weeks. I'm on my third week right now. I was instructed to reduce Pred 5mg every 2 weeks and reduce again 5mg 3 weeks , which is
redhouts
in
PMRGCAuk
2 years ago
World Blood Cancer Day May 28th
Please help promote knowledge about Blood Cancers and Stem Cell Transplant Matching. Help support the become a donor campaigns! Global event! Please see link for more information They have various downloads that can be used on social media like Facebook https://www.worldbloodcancerday.org/en/media
Please help promote knowledge about Blood Cancers and Stem Cell Transplant Matching. Help support the become a donor campaigns! Global event! Please see link for more information They have various downloads that can be used on social media like Facebook https://www.worldbloodcancerday.org/en/media
Dovme
in
MPN Voice
2 years ago
Lower Abdominal pain and Tocilizumab
Tocilizumab side effects: The main thing I have noticed is a proneness to infection, like UTIs, sinus, nasal and Blepharitis. This will be because my immunity is so firmly suppressed what with Prednisalone and Tocilizumab. I was able to quickly get down from 40 mgs of Pred to 10 mgs without the usual
Tocilizumab side effects: The main thing I have noticed is a proneness to infection, like UTIs, sinus, nasal and Blepharitis. This will be because my immunity is so firmly suppressed what with Prednisalone and Tocilizumab. I was able to quickly get down from 40 mgs of Pred to 10 mgs without the usual
SheffieldJane
in
PMRGCAuk
2 years ago
What are the Significant Tests to Determine Pernicious Anemia
Hello Everyone...I'd like to start by saying how much I appreciate each of you. I have learned an enormous amount of information since joining this group and it has helped me in so many ways; one of which is how to form questions to ask my doctors (I go in prepared with written questions as my brain
Hello Everyone...I'd like to start by saying how much I appreciate each of you. I have learned an enormous amount of information since joining this group and it has helped me in so many ways; one of which is how to form questions to ask my doctors (I go in prepared with written questions as my brain
Hidden
in
Pernicious Anaemia Society
2 years ago
Bone marrow transplant
Hello, I am 60 years old. I have been struggling with AMN for over 35 years. I am wheelchair bound, but can still stand. My symptoms have been stable for many years. In a few weeks, I will be getting my first MRI in 30 years. I am afraid if the results are poor, I will have to get bone marrow transplant
Hello, I am 60 years old. I have been struggling with AMN for over 35 years. I am wheelchair bound, but can still stand. My symptoms have been stable for many years. In a few weeks, I will be getting my first MRI in 30 years. I am afraid if the results are poor, I will have to get bone marrow transplant
HenryW
in
AMN EASIER
2 years ago
Map of Human Blood Stem Cell Development Created
ARTICLE https://www.insideprecisionmedicine.com/topics/precision-medicine-topic/stem-cells/map-of-human-blood-stem-cell-development-created/ : EXTRACTS Researchers at UCLA have created a detailed map of human blood cells and how they develop in an embryo, which could help improve treatments for blood-related
ARTICLE https://www.insideprecisionmedicine.com/topics/precision-medicine-topic/stem-cells/map-of-human-blood-stem-cell-development-created/ : EXTRACTS Researchers at UCLA have created a detailed map of human blood cells and how they develop in an embryo, which could help improve treatments for blood-related
bennevisplace
in
CLL Support
2 years ago
CAR T vaccine
GeoVax is conducting two Phase II COVID-19 vaccine clinical trials with its GEO-CMO4S1 vaccine. One of the trials is among immunocompromised patients who have been treated with CAR T therapy or have undergone bone marrow transplants. https://www.biospace.com/article/geovax-s-novel-vaccine-platform-induces-both-antibody-and-t-cell-responses
GeoVax is conducting two Phase II COVID-19 vaccine clinical trials with its GEO-CMO4S1 vaccine. One of the trials is among immunocompromised patients who have been treated with CAR T therapy or have undergone bone marrow transplants. https://www.biospace.com/article/geovax-s-novel-vaccine-platform-induces-both-antibody-and-t-cell-responses
Scout4answers
in
Advanced Prostate Cancer
2 years ago
What’s New in MS Research - March 2022
Thank you again to everyone who posted about and is discussing MSAA's latest edition of the "What's New in MS Research" report on our website! For those that don't know: this series of online articles is published periodically and features important information on topics ranging from highlights of major
Thank you again to everyone who posted about and is discussing MSAA's latest edition of the "What's New in MS Research" report on our website! For those that don't know: this series of online articles is published periodically and features important information on topics ranging from highlights of major
johnMSAA
Partner
in
My MSAA Community
2 years ago
CD19 CAR-T cell therapy for B-ALL achieved remarkable efficacy with a complete remission of 70–90%
This looks interesting but way over my knowledge base. Perhaps some of you super brains can figure this out. In recent years, the increasing advancements and applications of cellular immunotherapy have enabled the use of chimeric antigen receptor (CAR) T cell therapy, and it has emerged as an efficacious
This looks interesting but way over my knowledge base. Perhaps some of you super brains can figure this out. In recent years, the increasing advancements and applications of cellular immunotherapy have enabled the use of chimeric antigen receptor (CAR) T cell therapy, and it has emerged as an efficacious
Scout4answers
in
Advanced Prostate Cancer
2 years ago
Normal blood levels mean anything?
I generally have normal b12 levels in the 500-600 range but have symptoms that mimic b12 deficiency. Sometimes my folate levels are low and I supplement there but was wondering if b12 injections are the next step. My doctor did a parietal cell antibody test and that was high at 30 but mma was below
I generally have normal b12 levels in the 500-600 range but have symptoms that mimic b12 deficiency. Sometimes my folate levels are low and I supplement there but was wondering if b12 injections are the next step. My doctor did a parietal cell antibody test and that was high at 30 but mma was below
Jjg42
in
Pernicious Anaemia Society
2 years ago
Menopause and Sickle Cell
I am experiencing menopause because, I haven't had a period in many months. But what I notice is that I'm experiencing sickle cell crisis more often. After reading a lot information, I discovered that since the hormones protecting me and now going down, I'm at risk of many things, including stroke, heart
I am experiencing menopause because, I haven't had a period in many months. But what I notice is that I'm experiencing sickle cell crisis more often. After reading a lot information, I discovered that since the hormones protecting me and now going down, I'm at risk of many things, including stroke, heart
Iyalode26
in
Sickle Cell Society
3 years ago
Liver function tests with Tocilizumab.
My Liver function tests are slightly out of range (0-35) mine were 42 last time and 46 recently. My Rheumatologist proposes that I come off Tocilizumab and start Methotrexate . It was my understanding that Metotrexate also caused raised liver enzymes. I don’t want to alienate my lovely Rheumatologist
My Liver function tests are slightly out of range (0-35) mine were 42 last time and 46 recently. My Rheumatologist proposes that I come off Tocilizumab and start Methotrexate . It was my understanding that Metotrexate also caused raised liver enzymes. I don’t want to alienate my lovely Rheumatologist
SheffieldJane
in
PMRGCAuk
2 years ago
Next-level Dose Given in Trial of Stem Cell Therapy for Bradykinesia
IMAC Holdings has completed dosing the second group of patients in its Phase 1 clinical trial testing umbilical cord-derived mesenchymal stem cell therapy for the treatment of bradykinesia due to Parkinson’s disease. About a year ago, a first group of five patients received a low dose of the therapy
IMAC Holdings has completed dosing the second group of patients in its Phase 1 clinical trial testing umbilical cord-derived mesenchymal stem cell therapy for the treatment of bradykinesia due to Parkinson’s disease. About a year ago, a first group of five patients received a low dose of the therapy
Hidden
in
Cure Parkinson's
2 years ago
Can I quote you?
Hey experts … PMRpro, DorsetLady et al, My local Member of Parliament has just visited me to get information to put to our Federal Health Minister in an attempt to get an exemption so that I can have my allocation of tocilizumab extended, or indeed get the drug made available as it is for RA. Among
Hey experts … PMRpro, DorsetLady et al, My local Member of Parliament has just visited me to get information to put to our Federal Health Minister in an attempt to get an exemption so that I can have my allocation of tocilizumab extended, or indeed get the drug made available as it is for RA. Among
LemonZest11
in
PMRGCAuk
3 years ago
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