Search
Search
About
Log in
Join
Experiences with
Ageing well
Posts
Communities
931 public posts
Filter results
Red face / flushing. Possible rosacea
Hi I am 200 plus days post stem cell transplant. Since then I get flushed very easily. I have suffered with this in the past and still have it now but maybe worse I take a few medications still which may or may not help and wondered on any good way of controlling it my consultant has recommended me
Hi I am 200 plus days post stem cell transplant. Since then I get flushed very easily. I have suffered with this in the past and still have it now but maybe worse I take a few medications still which may or may not help and wondered on any good way of controlling it my consultant has recommended me
Kraskie1915
in
CLL Support
1 year ago
Life beyond Myelofibrosis
I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was
I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was
Scaredy_cat
in
MPN Voice
1 year ago
introducing myself...
hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant at sloan kettering hospital in new york city in late march. i'm wondering if anyone out there has experienced the same? looking forward to hearing
hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant at sloan kettering hospital in new york city in late march. i'm wondering if anyone out there has experienced the same? looking forward to hearing
jmcasbar
in
Leukaemia Support
1 year ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Update on my previous post trapped nerve and PMR.
After an MRI on my spine I do not have a trapped nerve in my back and my pain is two vertebrae bones crumbling. I have come to the conclusion that the pain in my back and bottom area is mainly my PMR flare, it is so bad I can't move without pain while in bed. Tried increasing my pred dosage from 6mg
After an MRI on my spine I do not have a trapped nerve in my back and my pain is two vertebrae bones crumbling. I have come to the conclusion that the pain in my back and bottom area is mainly my PMR flare, it is so bad I can't move without pain while in bed. Tried increasing my pred dosage from 6mg
Washingup
in
PMRGCAuk
1 year ago
FDA Approves Cell Therapy for Patients with Blood Cancers to Reduce Risk of Infection Following Stem Cell Transplantation- Released 4/17/23
Today [4/17/23], the U.S. Food and Drug Administration approved Omisirge (omidubicel-onlv), a substantially modified allogeneic (donor) cord blood-based cell therapy to quicken the recovery of neutrophils (a subset of white blood cells) in the body and reduce the risk of infection. The product is intended
Today [4/17/23], the U.S. Food and Drug Administration approved Omisirge (omidubicel-onlv), a substantially modified allogeneic (donor) cord blood-based cell therapy to quicken the recovery of neutrophils (a subset of white blood cells) in the body and reduce the risk of infection. The product is intended
PhysAssist
in
MPN Voice
1 year ago
'Astonishing' Results: Skip Salvage Chemo, Go Straight to HSCT from ASH 2022 [For Refractory AML/Relapsed AML]
NEW ORLEANS — Investigators confessed to being "astonished" by results of a randomized trial showing that patients with acute myeloid leukemia who have a poor response following induction therapy do just as well going on to immediate allogeneic transplant as they would if they had received an intensive
NEW ORLEANS — Investigators confessed to being "astonished" by results of a randomized trial showing that patients with acute myeloid leukemia who have a poor response following induction therapy do just as well going on to immediate allogeneic transplant as they would if they had received an intensive
PhysAssist
in
MPN Voice
1 year ago
Hi, im new here
Hi, im really wondering if i have developed fibromyalgia. I have recently recovered from treatment for blood cancer by having a stem cell transplant (14 months ago) im struggling to return to work full time, im suffering everyday with pain ,fatigue, weakness, dizziness, brain fog, sometimes my skin
Hi, im really wondering if i have developed fibromyalgia. I have recently recovered from treatment for blood cancer by having a stem cell transplant (14 months ago) im struggling to return to work full time, im suffering everyday with pain ,fatigue, weakness, dizziness, brain fog, sometimes my skin
Marchhare7
in
Fibromyalgia Action UK
1 year ago
billionaires
i dot know how many of you heard the " Doc vs Parkinson's" story A doctor who paid almost 20 million dollars to get a stem cell transplant of brain about 3 years ago. He had PD for 15 years and now his symptoms are reversing. Are people with money, power and PD are getting efficient treatment and
i dot know how many of you heard the " Doc vs Parkinson's" story A doctor who paid almost 20 million dollars to get a stem cell transplant of brain about 3 years ago. He had PD for 15 years and now his symptoms are reversing. Are people with money, power and PD are getting efficient treatment and
Rupa88
in
Cure Parkinson's
1 year ago
Fantastic Book for PMR and GCA
On one of my earlier posts, a poster referred me to a book about PMR and GCA. My husband, 73 has been diagnosed with PMR. She recommended this book and it has been fantastic and eye opening and in many ways a Godsend, particularly for asking questions of the rheumatologist and his proactive GP who
On one of my earlier posts, a poster referred me to a book about PMR and GCA. My husband, 73 has been diagnosed with PMR. She recommended this book and it has been fantastic and eye opening and in many ways a Godsend, particularly for asking questions of the rheumatologist and his proactive GP who
Andymegv
in
PMRGCAuk
1 year ago
Important to know, but sucks to have: TP53 Mutations Confer High Risk in Patients With Myelofibrosis Undergoing HSCT
Patients with myelofibrosis who harbored multi-hit TP53 mutations were at increased risk for relapse, shorter survival, and leukemic transformation after hematopoietic stem cell transplant (HSCT), according to results of a study published in the Blood. “TP53 mutations have been associated with poor
Patients with myelofibrosis who harbored multi-hit TP53 mutations were at increased risk for relapse, shorter survival, and leukemic transformation after hematopoietic stem cell transplant (HSCT), according to results of a study published in the Blood. “TP53 mutations have been associated with poor
PhysAssist
in
MPN Voice
1 year ago
Steroid sparing agents
Could anyone tell me more about Steroid sparing agents please? I have read about Methotrexate and Tocilizumab (?) but not really sure when or if I would go on them ( I was only diagnosed with GCA at the end of January) - also, side effects etc? I see my Rheumatologist next Monday and want to armed with
Could anyone tell me more about Steroid sparing agents please? I have read about Methotrexate and Tocilizumab (?) but not really sure when or if I would go on them ( I was only diagnosed with GCA at the end of January) - also, side effects etc? I see my Rheumatologist next Monday and want to armed with
Janeval
in
PMRGCAuk
1 year ago
Milk thistle - anything to be aware of?
A recent blood panel came back with slightly raised liver enzymes (marginally above the range), for reasons I am looking into. I have read about the benefits of milk thistle supplementation with respect to helping with both liver and thyroid matters. On the whole, the consensus seems to be that it
A recent blood panel came back with slightly raised liver enzymes (marginally above the range), for reasons I am looking into. I have read about the benefits of milk thistle supplementation with respect to helping with both liver and thyroid matters. On the whole, the consensus seems to be that it
JonnyA
in
Thyroid UK
1 year ago
Can Divine Intervention Change Your Genotype?
Reports of sickle cell cures/genotype change by divine intervention have become too many to ignore. _SICKLE CELL NEWS_ ventured to investigate: and it turned out easier to pass a camel through the eye of a needle than find anyone cured of sickle cell by Faith! https://selar.co/lor8 We interviewed
Reports of sickle cell cures/genotype change by divine intervention have become too many to ignore. _SICKLE CELL NEWS_ ventured to investigate: and it turned out easier to pass a camel through the eye of a needle than find anyone cured of sickle cell by Faith! https://selar.co/lor8 We interviewed
sicklecellnews
in
Sickle Cell Society
1 year ago
Bone marrow transplant possibility and leriglitazone update
An update to which I had previously posted; ,I went to London and met Doctor Robin Lachmann. He is going to start me on the drug soon then I will need to go bk to London after being on it for 4 weeks so they can tweak the dosage. He views this more of a temporary solution though and I think has concerns
An update to which I had previously posted; ,I went to London and met Doctor Robin Lachmann. He is going to start me on the drug soon then I will need to go bk to London after being on it for 4 weeks so they can tweak the dosage. He views this more of a temporary solution though and I think has concerns
JShough
in
AMN EASIER
1 year ago
Getting older with ss
I'm in my 40's now and I have fewer pain crisis then I had when I was younger. You'd think things would get easier because of this but it isn't. Now I'm dealing with a lot of health problems that sickle cell caused or exacerbated. Like heart problems (which I take meds for), a bad hip (which I had replaced
I'm in my 40's now and I have fewer pain crisis then I had when I was younger. You'd think things would get easier because of this but it isn't. Now I'm dealing with a lot of health problems that sickle cell caused or exacerbated. Like heart problems (which I take meds for), a bad hip (which I had replaced
SociallyUrban
in
Sickle Cell Society
1 year ago
‘World's 1st' fetal brain stem cell transplant effective in Parkinson's disease: study
CHA University Bundang Medical Center (CBMC) said on Monday that its researchers proved the safety and effectiveness of dopamine neural precursor cells derived from fetal mesenchymal stem cells transplanted into patients with Parkinson's disease "for the first time in the world." Cell replacement therapy
CHA University Bundang Medical Center (CBMC) said on Monday that its researchers proved the safety and effectiveness of dopamine neural precursor cells derived from fetal mesenchymal stem cells transplanted into patients with Parkinson's disease "for the first time in the world." Cell replacement therapy
Baron1
in
Cure Parkinson's
1 year ago
Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica - a very useful reference to show your doctor
https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429 This is Open Access so everyone can read it. It is something I think we should all have a read of, some will be beyond most of us and some is just plain boring but there are points in it everyone will understand and can bring to the notice
https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429 This is Open Access so everyone can read it. It is something I think we should all have a read of, some will be beyond most of us and some is just plain boring but there are points in it everyone will understand and can bring to the notice
PMRpro
Ambassador
in
PMRGCAuk
1 year ago
Travel insurance within the UK.
I'm travelling from Essex to Belfast next month and am looking for travel insurance. With belfast being in the UK I wonder if I actually need cover anyway. I am over 200 days post stem cell transplant and it will be my first time travelling abroad as such since the start of covid in 2020. I am considering
I'm travelling from Essex to Belfast next month and am looking for travel insurance. With belfast being in the UK I wonder if I actually need cover anyway. I am over 200 days post stem cell transplant and it will be my first time travelling abroad as such since the start of covid in 2020. I am considering
Kraskie1915
in
CLL Support
1 year ago
parietal cell antibody lab results
I’m having trouble interpreting my lab results. My Parietal Cell Antibody IgG value is 33.2 units and it said the standard range is 0.0-24.9 units. So it’s above the standard range but not by much. Apparently above 25 units is positive so that means I’m positive? I just want to confirm.
I’m having trouble interpreting my lab results. My Parietal Cell Antibody IgG value is 33.2 units and it said the standard range is 0.0-24.9 units. So it’s above the standard range but not by much. Apparently above 25 units is positive so that means I’m positive? I just want to confirm.
Purplegirl2
in
Pernicious Anaemia Society
1 year ago
You are what you breath - but what you breath varies...
[i]MY reason for writing this is one or two people liked my answers about the strange world of breathing. I am not a clinician, nor a scientist so beware taking me literally. However some things are self-evident dear Watson. [/i] We breath in a mixture of oxygen (20%) , nitrogen (79%) and a tiny amount
[i]MY reason for writing this is one or two people liked my answers about the strange world of breathing. I am not a clinician, nor a scientist so beware taking me literally. However some things are self-evident dear Watson. [/i] We breath in a mixture of oxygen (20%) , nitrogen (79%) and a tiny amount
Timberman
in
Lung Conditions Community Forum
1 year ago
1
...
5
6
7
...
47
Next page
10
20
30
40
Filter results
Clear filters
Posted in
All communities
PMRGCAuk
199 results
MPN Voice
129 results
CLL Support
116 results
View top 10 communities
Sort by
Most Relevant
Newest