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PV & Gene Editing for Sickle cell anemia
Has anyone been following the latest news on treatment for sickle cell anemia? Since many of us are treated with hydroxyurea which is approved for sickle cell anemia, I was wondering if this may be in our future? "The F.D.A. approved the first gene editing therapy ever, for sickle cell disease, a debilitating
Has anyone been following the latest news on treatment for sickle cell anemia? Since many of us are treated with hydroxyurea which is approved for sickle cell anemia, I was wondering if this may be in our future? "The F.D.A. approved the first gene editing therapy ever, for sickle cell disease, a debilitating
ERei
in
MPN Voice
8 months ago
Antioxidants can help cancerous tumors grow new blood vessels, which helps the cancer to grow and spread.
They didn't expressly refer to prostate cancer. But this is an issue that has been on my mind for a while. Antioxidants can help cancerous tumors grow new blood vessels, which helps the cancer to grow and spread. Https://m.jpost.com/health-and-wellness/article-757233 While many people may take
They didn't expressly refer to prostate cancer. But this is an issue that has been on my mind for a while. Antioxidants can help cancerous tumors grow new blood vessels, which helps the cancer to grow and spread. Https://m.jpost.com/health-and-wellness/article-757233 While many people may take
cesanon
in
Advanced Prostate Cancer
11 months ago
Life after Tocilizumab?
I've been off steroids since mid-May. Continuing to take methotrexate (15mg weekly) and Toxilizumab weekly. I seem to be doing well - bloods fine and health ok. I'm seeing rheumatologist next week and my concern is I'm guessing that I won't be eligible for further Tox after my current prescription runs
I've been off steroids since mid-May. Continuing to take methotrexate (15mg weekly) and Toxilizumab weekly. I seem to be doing well - bloods fine and health ok. I'm seeing rheumatologist next week and my concern is I'm guessing that I won't be eligible for further Tox after my current prescription runs
tweety_pie
in
PMRGCAuk
25 days ago
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Tocilizumab
I am advised that a biosimilar to tocilizumab has been approved in the UK and will be available at a more economical price , enabling NICE to allow NHS prescriptions for GCA after the initial 12 months. My GP and Consultant keen to get me off Pred altogether ( currently on second attempt in 3 years)
I am advised that a biosimilar to tocilizumab has been approved in the UK and will be available at a more economical price , enabling NICE to allow NHS prescriptions for GCA after the initial 12 months. My GP and Consultant keen to get me off Pred altogether ( currently on second attempt in 3 years)
Niblick
in
PMRGCAuk
1 month ago
Colonoscopy
Just have a question. I was put on a 5 Day taper of 16mg of prednisolone. I took my first dose today along with a one time dose of diflucan. Will I be ok to have my colonoscopy tomorrow?
Just have a question. I was put on a 5 Day taper of 16mg of prednisolone. I took my first dose today along with a one time dose of diflucan. Will I be ok to have my colonoscopy tomorrow?
Babciboys
in
PMRGCAuk
1 month ago
Returning temporal headaches after stopping Tocilizumab, what to do ?
I will try to be brief. UK male aged 70 Diagnosed with GCA (ultra sound scan only) 2 years ago. Only minor symptoms experienced (mainly temporal headache). 65mg Prednisolone prescribed daily for 2 weeks, then to reduce by 5mg per month. A couple of "flares" (just headaches) in the following 12 months
I will try to be brief. UK male aged 70 Diagnosed with GCA (ultra sound scan only) 2 years ago. Only minor symptoms experienced (mainly temporal headache). 65mg Prednisolone prescribed daily for 2 weeks, then to reduce by 5mg per month. A couple of "flares" (just headaches) in the following 12 months
ghost123uk
in
PMRGCAuk
2 months ago
Neutropenia whilst on Tocilizumab
Hi. Just wondering if anyone has had a similar experience. Diagnosed with PMR and GCA Nov. 2021. For last 2 months I have been on weekly Tocilizumab injections; this followed a further flare up in December 2023 when the entire aorta was inflamed (I have never had cranial symptoms). I was certainly shocked
Hi. Just wondering if anyone has had a similar experience. Diagnosed with PMR and GCA Nov. 2021. For last 2 months I have been on weekly Tocilizumab injections; this followed a further flare up in December 2023 when the entire aorta was inflamed (I have never had cranial symptoms). I was certainly shocked
Magsters123
in
PMRGCAuk
2 months ago
Qualifying for Tocilizumab
Hello, I have had a relapse of GCA and have been put on a reduction plan. Was on 40mg pred now reducing by 10mg every two weeks. I had an emergency ultrasound of temporal and axillary arteries but it was three weeks after going on 40mg of pred so my consultant radiologist did say that nothing would
Hello, I have had a relapse of GCA and have been put on a reduction plan. Was on 40mg pred now reducing by 10mg every two weeks. I had an emergency ultrasound of temporal and axillary arteries but it was three weeks after going on 40mg of pred so my consultant radiologist did say that nothing would
Golfers1
in
PMRGCAuk
2 months ago
pink patches on skin
Hi I am 44 days post SCT and am at home recovering . I’m feeling quite well . I am 68 and have no other health issues . My blood counts are ok considering it’s not long since I had the transplant . haemoglobin is 94 with the help of some jabs in my stomach Platelets 61 WBC 3.8 Neutrofils
Hi I am 44 days post SCT and am at home recovering . I’m feeling quite well . I am 68 and have no other health issues . My blood counts are ok considering it’s not long since I had the transplant . haemoglobin is 94 with the help of some jabs in my stomach Platelets 61 WBC 3.8 Neutrofils
Tortina
in
MPN Voice
11 months ago
Coopersmummy7
Hi,I am new to this awful condition.Had nearly a year of being undiagnosed and finally rushed into hospital Dec.22 with GCAand loss of sight in one eye.Long story short,2 relapses,yo yo ing of f prednisilone,could not tolerate Metho, or leflunomide,and now looks like I will be starting on Tocilzumab.Am
Hi,I am new to this awful condition.Had nearly a year of being undiagnosed and finally rushed into hospital Dec.22 with GCAand loss of sight in one eye.Long story short,2 relapses,yo yo ing of f prednisilone,could not tolerate Metho, or leflunomide,and now looks like I will be starting on Tocilzumab.Am
Angelsmummy
in
PMRGCAuk
3 months ago
Vasculitus, a promising road ahead- let’s hope so!
https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(24)00094-8/fulltext?dgcid=raven_jbs_aip_email ‘…Biologics have come to the forefront as glucocorticoid-sparing agents. After the seminal GiACTA trial, tocilizumab is now recommended as a first-line therapy for giant cell arteritis in combination
https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(24)00094-8/fulltext?dgcid=raven_jbs_aip_email ‘…Biologics have come to the forefront as glucocorticoid-sparing agents. After the seminal GiACTA trial, tocilizumab is now recommended as a first-line therapy for giant cell arteritis in combination
Exflex
in
PMRGCAuk
3 months ago
Question on PMR and Temporal Arteritis
Does anyone know: would an MRI show Temporal Arteritis or would a person need a biopsy to determine if Temporal Arteritis was present? Asking for a person newly diagnosed with PMR and in the ER dept was told she had Temporal Arteritis. Yesterday she went to the rheumatologist and was told she definitely
Does anyone know: would an MRI show Temporal Arteritis or would a person need a biopsy to determine if Temporal Arteritis was present? Asking for a person newly diagnosed with PMR and in the ER dept was told she had Temporal Arteritis. Yesterday she went to the rheumatologist and was told she definitely
Musiclady18
in
PMRGCAuk
4 months ago
Patients with higher apolipoprotein A-I levels at greater risk for giant cell arteritis
https://www.healio.com/news/rheumatology/20240315/patients-with-higher-apolipoprotein-ai-levels-at-greater-risk-for-giant-cell-arteritis
https://www.healio.com/news/rheumatology/20240315/patients-with-higher-apolipoprotein-ai-levels-at-greater-risk-for-giant-cell-arteritis
perceptual63
in
PMRGCAuk
4 months ago
Surviving in retirement
At age 52 I was diagnosed with stage 3 Multiple Myeloma ; after 2 bone marrow transplants in 2007 & 2009 I was able to continue my engineering job until age 65. At 66 my PSA was 3400 with Gleason score 4 ; started Docetaxel and Jevtana until July 23 ; Now on Pluvicto have 5 more treatments to
At age 52 I was diagnosed with stage 3 Multiple Myeloma ; after 2 bone marrow transplants in 2007 & 2009 I was able to continue my engineering job until age 65. At 66 my PSA was 3400 with Gleason score 4 ; started Docetaxel and Jevtana until July 23 ; Now on Pluvicto have 5 more treatments to
chipspesto
in
Advanced Prostate Cancer
1 year ago
Tapering
Just a quick question about tapering Prednisolone. I have had GCA since Aug 22. Have tapered down to 5mg but had the beginnings of a flare. My rheumatologist told me to go up to 7.5mg. The flare abated. I then got an infection/virus and on the advice of the rheumatology nurses increased to 10mg for a
Just a quick question about tapering Prednisolone. I have had GCA since Aug 22. Have tapered down to 5mg but had the beginnings of a flare. My rheumatologist told me to go up to 7.5mg. The flare abated. I then got an infection/virus and on the advice of the rheumatology nurses increased to 10mg for a
Noni71
in
PMRGCAuk
5 months ago
Aortitis
I was diagnosed with non cranial Giant Cell Arteritis in September last year. So far I haven't managed to find anyone else with this condition because most people have the temporal version with the headaches.Mine is Aortitis which apparently is rare. I'd love to share experiences with someone else
I was diagnosed with non cranial Giant Cell Arteritis in September last year. So far I haven't managed to find anyone else with this condition because most people have the temporal version with the headaches.Mine is Aortitis which apparently is rare. I'd love to share experiences with someone else
Dance62
in
PMRGCAuk
5 months ago
start of my SCT journey
Hi pawb I’m primary MF and Cal-r positive. I’ve been on Epo injections for 30 weeks which has kept my red cells in the high 90s. My platelets are in the low 40s. I have started to take Ruxolitinib but because of my low platelets 5mg 2 times a day. This will hopefully reduce my spleen. I have been told
Hi pawb I’m primary MF and Cal-r positive. I’ve been on Epo injections for 30 weeks which has kept my red cells in the high 90s. My platelets are in the low 40s. I have started to take Ruxolitinib but because of my low platelets 5mg 2 times a day. This will hopefully reduce my spleen. I have been told
Grizly
in
MPN Voice
1 year ago
Stem Cell Transplant update
I am now close to 6 months from my sct. I feel well in myself except for side affects from steroids which I should be off in a week. They make it difficult to sleep, make me hungry and over full of energy . Many of my blood counts are in normal range except for platelets. These keep yo-yoing around
I am now close to 6 months from my sct. I feel well in myself except for side affects from steroids which I should be off in a week. They make it difficult to sleep, make me hungry and over full of energy . Many of my blood counts are in normal range except for platelets. These keep yo-yoing around
Scaredy_cat
in
MPN Voice
1 year ago
Anyone’s thoughts on milk thistle?https://thyroidpatients.ca/2022/01/16/milk-thistle-thyroid-transport/amp/
I am on a hormone group someone has shared this I’ve been using milk thistle organic oil orally with vitamin e it doesn’t seem to have had any negative effects on myself thankyou in advance
I am on a hormone group someone has shared this I’ve been using milk thistle organic oil orally with vitamin e it doesn’t seem to have had any negative effects on myself thankyou in advance
Joannak
in
Thyroid UK
10 months ago
Strategic Masking to Protect Patients from All Respiratory Viral Infections
https://www.nejm.org/doi/full/10.1056/NEJMp2306223 - The end of the public health emergency in the United States is a richly symbolic milestone in the course of the SARS-CoV-2 pandemic. During the height of the pandemic, the virus killed millions of people worldwide, upended lives, and radically altered
https://www.nejm.org/doi/full/10.1056/NEJMp2306223 - The end of the public health emergency in the United States is a richly symbolic milestone in the course of the SARS-CoV-2 pandemic. During the height of the pandemic, the virus killed millions of people worldwide, upended lives, and radically altered
lankisterguy
Volunteer
in
CLL Support
1 year ago
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