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CLL Society interview - Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023
Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023 https://cllsociety.org/2023/01/dr-shahzad-mustafa-on-what-it-means-to-be-immunocompromised-for-patients-with-cll-sll/ https://youtu.be/DSOKTmffc-s - In this interview, Dr. Brian Koffman spoke
Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023 https://cllsociety.org/2023/01/dr-shahzad-mustafa-on-what-it-means-to-be-immunocompromised-for-patients-with-cll-sll/ https://youtu.be/DSOKTmffc-s - In this interview, Dr. Brian Koffman spoke
lankisterguy
Volunteer
in
CLL Support
2 years ago
What is the difference between these two tests?
Parietal Cell Antibody, ELISA/ positive Parietal Cell Antibody with Relex to Titer/ Negative
Parietal Cell Antibody, ELISA/ positive Parietal Cell Antibody with Relex to Titer/ Negative
Tigerlilly81
in
Pernicious Anaemia Society
1 year ago
Hot flashes?
Am having ever more hot flashes and sweating around my neck over last several months. Could it be the steroids? In the distant past, was relying on welbutrin for depression but got hot flashes and changed to escatolepram. In the last few years I started taking a small dose of welbutrin in addition
Am having ever more hot flashes and sweating around my neck over last several months. Could it be the steroids? In the distant past, was relying on welbutrin for depression but got hot flashes and changed to escatolepram. In the last few years I started taking a small dose of welbutrin in addition
Merryfield
in
PMRGCAuk
1 year ago
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Can you 'demand' Tocilizumab for GCA?
I was diagnosed with PMR in January 23, responded well to steroids (15mg) but quickly developed GCA symptoms (severe headache pain, blurred vision and jaw claudication) when these were reduced to 12.5mg after 3 weeks and 'normal' CRP/ESR tests. I was referred to Ambulatory care but an ultrasound showed
I was diagnosed with PMR in January 23, responded well to steroids (15mg) but quickly developed GCA symptoms (severe headache pain, blurred vision and jaw claudication) when these were reduced to 12.5mg after 3 weeks and 'normal' CRP/ESR tests. I was referred to Ambulatory care but an ultrasound showed
tweety_pie
in
PMRGCAuk
1 year ago
Tocilizumab
Hi. Has anyone had Tocilizumab injections for pmr? I've been looking at recent research which seems to suggest favourable outcomes for pmr sufferers who have problems tapering prednisolone.
Hi. Has anyone had Tocilizumab injections for pmr? I've been looking at recent research which seems to suggest favourable outcomes for pmr sufferers who have problems tapering prednisolone.
BlueMozart
in
PMRGCAuk
1 year ago
Preparations afoot for my stem cell transplant
I've finally got dates for my sct. I have a CT scan next week in preparation for radiotherapy to shrink my spleen . That will be followed by 6 days of radiotherapy as an out patient then 24 Jan I get admitted and start chemo. Donor cells getting infused a few days later. I knew all along this was going
I've finally got dates for my sct. I have a CT scan next week in preparation for radiotherapy to shrink my spleen . That will be followed by 6 days of radiotherapy as an out patient then 24 Jan I get admitted and start chemo. Donor cells getting infused a few days later. I knew all along this was going
Scaredy_cat
in
MPN Voice
2 years ago
Update on progress with MF and the FEDORA clinical trial
So to recap, I was diagnosed with primary MF in October 2022 and asked to join a new clinical trial called FEDORA. After many tests including a BMB, ultrasound on my abdomen, chest X-ray etc. I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first
So to recap, I was diagnosed with primary MF in October 2022 and asked to join a new clinical trial called FEDORA. After many tests including a BMB, ultrasound on my abdomen, chest X-ray etc. I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first
Flyingsteamer
in
MPN Voice
2 years ago
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
Stem Cell Transplant (stc) after care
Can someone who has been through a sct, or their carer, give me info about the time after hospital discharge please? We live more than 30 minutes from the transplant centre so the hospital is providing us with a flat in Bristol where my husband will be my carer. I know the early days he'll need to
Can someone who has been through a sct, or their carer, give me info about the time after hospital discharge please? We live more than 30 minutes from the transplant centre so the hospital is providing us with a flat in Bristol where my husband will be my carer. I know the early days he'll need to
Scaredy_cat
in
MPN Voice
2 years ago
COVID: Staying Safe As The Virus Evolves - LLS Podcast / CLL Society’s COVID-19 Update December 5th, 2022 / Dec 15 2022 end Antibody Study
The Bloodline with LLS has a new episode!
https://thebloodline.org/TBL/132e134/?c_src=email&c_src2=sfmc&utm_source=sfmc&utm_medium=email&utm_campaign=Podcast+Episode+Announcement+-+COVID+-+December2022&utm_term COVID: Staying Safe As The Virus Evolves Join us as we speak to Dr. Lee Greenberger
The Bloodline with LLS has a new episode!
https://thebloodline.org/TBL/132e134/?c_src=email&c_src2=sfmc&utm_source=sfmc&utm_medium=email&utm_campaign=Podcast+Episode+Announcement+-+COVID+-+December2022&utm_term COVID: Staying Safe As The Virus Evolves Join us as we speak to Dr. Lee Greenberger
lankisterguy
Volunteer
in
CLL Support
2 years 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
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
COVID update: Who remains at higher risk? by LLS.org
COVID update: Who remains at higher risk? https://www.lls.org/covid-19-resources Almost exactly three years ago on December 12, 2019, we received the first reports of a cluster of patients in China with symptoms of what turned out to be COVID-19. Vaccines and COVID-19 treatments have dramatically
COVID update: Who remains at higher risk? https://www.lls.org/covid-19-resources Almost exactly three years ago on December 12, 2019, we received the first reports of a cluster of patients in China with symptoms of what turned out to be COVID-19. Vaccines and COVID-19 treatments have dramatically
lankisterguy
Volunteer
in
CLL Support
2 years 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
2 years 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
2 years 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
2 years 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
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
Joining the Group
Hi, Folks. I am joining as a newly diagnosed SLL patient, currently under treatment with BTKi and Gazyva. So far, I have read through many posts and have been comforted by your experiences and ways of coping with our ongoing immunity issues. I honestly feel very confident that these new treatments
Hi, Folks. I am joining as a newly diagnosed SLL patient, currently under treatment with BTKi and Gazyva. So far, I have read through many posts and have been comforted by your experiences and ways of coping with our ongoing immunity issues. I honestly feel very confident that these new treatments
tleachhsv
in
CLL America Support
2 years ago
ATG treatment /Rabbit antigens
Hi as previously explained I am awaiting bone marrow transplant. Have been told I will need rabbit antigens or ATG ahead of the process. From what the consultant has said it can cause lots of side effects eg high temp amongst other things. Has anybody else had this treatment? Thanks Joanne
Hi as previously explained I am awaiting bone marrow transplant. Have been told I will need rabbit antigens or ATG ahead of the process. From what the consultant has said it can cause lots of side effects eg high temp amongst other things. Has anybody else had this treatment? Thanks Joanne
Platelets2022
in
Leukaemia Support
2 years ago
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