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update: Zanabrutinib vs Obenven (O&V)
We are praying for Gods wisdom (James1:5), and we’re leaning toward the Zanabrutinib. The infusions and time and distance will be impactful to my husbands work and he’s prefer to go the simpler route. We learned he’s still 13Q and TP53 negative and his lymph nodes are reduced (we have used ALT for
We are praying for Gods wisdom (James1:5), and we’re leaning toward the Zanabrutinib. The infusions and time and distance will be impactful to my husbands work and he’s prefer to go the simpler route. We learned he’s still 13Q and TP53 negative and his lymph nodes are reduced (we have used ALT for
Cb1391
in
CLL Support
7 months ago
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
7 days 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
11 days ago
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CLL leukemia
What does it mean when your white blood count increases from 27 to 30.6 10^9/L 4.0-10.0 10^9/L
What does it mean when your white blood count increases from 27 to 30.6 10^9/L 4.0-10.0 10^9/L
Bobby13
in
CLL Support
7 months 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
25 days 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
27 days ago
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks
From MedPage Today, by Charles Bankhead, Senior Editor, MedPage Today November 28, 2023, Last Updated November 29, 2023. Posted FYI without comment: [i]
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks, agency
From MedPage Today, by Charles Bankhead, Senior Editor, MedPage Today November 28, 2023, Last Updated November 29, 2023. Posted FYI without comment: [i]
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks, agency
cujoe
in
CLL Support
7 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
1 month ago
Fatigue issues taking Eltroxin combined with Hydroxy for ET
Wonder if anyone else with ET on this forum has had additional challenge managing intense fatigue when taking Levothyroxine, trade name Eltroxin, a thyroid hormone supplement, combined with Hydroxy 500mg daily? Started Eltroxin February this year. Previously well managed situation. Now life is more of
Wonder if anyone else with ET on this forum has had additional challenge managing intense fatigue when taking Levothyroxine, trade name Eltroxin, a thyroid hormone supplement, combined with Hydroxy 500mg daily? Started Eltroxin February this year. Previously well managed situation. Now life is more of
Norma1831
in
MPN Voice
10 months ago
CLL and now very elevated Monocytes
I am under treatment for CLL using Venetoclax. It has been going well and my lymphocytes are controlled with a minimal dosage of Venetoclax of 50 mg.I just had labs yesterday and in 3 weeks my monocytes shot p from 5% to 15% and absolute count from. 08 to over 1000. I am so concerned I am developing
I am under treatment for CLL using Venetoclax. It has been going well and my lymphocytes are controlled with a minimal dosage of Venetoclax of 50 mg.I just had labs yesterday and in 3 weeks my monocytes shot p from 5% to 15% and absolute count from. 08 to over 1000. I am so concerned I am developing
ralphfelo
in
CLL Support
7 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
2 months ago
HCT Jumped 3%.
I haven't had to have a phlebotomy for months and my HCT was hanging in at 45 or below. I switch from HU to Pegasus 2 1/2 months ago and all of a sudden my HCT jumped up 3%. It must be because of the very low dose I started with which was 45mcgs. I went up to 60mcgs after 6 weeks and now he wants me
I haven't had to have a phlebotomy for months and my HCT was hanging in at 45 or below. I switch from HU to Pegasus 2 1/2 months ago and all of a sudden my HCT jumped up 3%. It must be because of the very low dose I started with which was 45mcgs. I went up to 60mcgs after 6 weeks and now he wants me
russkatt
in
MPN Voice
10 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
Zanubrutinib or O&V
The CLL specialist that we are seeing is giving my husband the choice between O&V and Zanubrutinib. We are trying to make the best decision, but struggling. They also said he can do one and switch to the other or vice a versa, but my husband works full-time and we’re a bit concerned about What seems
The CLL specialist that we are seeing is giving my husband the choice between O&V and Zanubrutinib. We are trying to make the best decision, but struggling. They also said he can do one and switch to the other or vice a versa, but my husband works full-time and we’re a bit concerned about What seems
Cb1391
in
CLL Support
8 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
3 months ago
jakafi and Pegasys combination for Myelofibrosis
Does anyone have both Jakafi and Pegasys? My Mpn has hinted that this might be a good combination. I think there have been trials but I can’t find them now!
Does anyone have both Jakafi and Pegasys? My Mpn has hinted that this might be a good combination. I think there have been trials but I can’t find them now!
Yanico
in
MPN Voice
10 months ago
Supportive wife
Hi there! My husband was diagnosed with CLL in 2015. He had zero issues, I was just concerned about esophageal issues (burping) and requested a 50-year full physical so we could get a scope. Within two weeks my husband had diagnosis for esophageal cancer at GE junction (14% survival rate) and CLL.
Hi there! My husband was diagnosed with CLL in 2015. He had zero issues, I was just concerned about esophageal issues (burping) and requested a 50-year full physical so we could get a scope. Within two weeks my husband had diagnosis for esophageal cancer at GE junction (14% survival rate) and CLL.
Cb1391
in
CLL Support
8 months ago
A new kid on the block? Nemtabrutinib
Hi All, There is a new targeted drug in Clinical Trials that may offer a new treatment option for us CLLers—Nemtabrutinib. For the entire article on this drug go to cancer.osu.edu and scroll down to “First in human trial of new drug raises hopes for patients with relapsed blood cancer” dated 11/06/
Hi All, There is a new targeted drug in Clinical Trials that may offer a new treatment option for us CLLers—Nemtabrutinib. For the entire article on this drug go to cancer.osu.edu and scroll down to “First in human trial of new drug raises hopes for patients with relapsed blood cancer” dated 11/06/
Varney
in
CLL Support
8 months ago
New era for myelofibrosis treatment with novel agents beyond JAK2 -inhibitor monotherapy
There is an urgent unmet medical need for treatments with a novel mechanism of action that can modify the underlying pathophysiology and affect the disease course of myelofibrosis. This review highlights the role of B-cell lymphoma (BCL) protein BCL-extra large (BCL-XL) in disease pathogenesis and the
There is an urgent unmet medical need for treatments with a novel mechanism of action that can modify the underlying pathophysiology and affect the disease course of myelofibrosis. This review highlights the role of B-cell lymphoma (BCL) protein BCL-extra large (BCL-XL) in disease pathogenesis and the
Manouche
in
MPN Voice
11 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
3 months ago
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