Search
Search
About
Log in
Join
Experiences with
Cutaneous T cell lymphoma (CTCL)
Posts
Communities
1,658 public posts
Filter results
Early Treatment for Covid-19 with SARS-CoV-2 Neutralizing Antibody Sotrovimab
Just published in the NEJM https://www.nejm.org/doi/full/10.1056/NEJMoa2107934?query=TOC&cid=NEJM%20eToc,%20October%2028,%202021%20DM415467_NEJM_Non_Subscriber&bid=685430303 Interim results from the COMET-ICE phase 3, placebo-controlled clinical trial of Sotrovimab for nonhospitalized patients with
Just published in the NEJM https://www.nejm.org/doi/full/10.1056/NEJMoa2107934?query=TOC&cid=NEJM%20eToc,%20October%2028,%202021%20DM415467_NEJM_Non_Subscriber&bid=685430303 Interim results from the COMET-ICE phase 3, placebo-controlled clinical trial of Sotrovimab for nonhospitalized patients with
bennevisplace
in
CLL Support
3 years ago
Starting tocilizumab
I had my first shot of TCZ this morning (10 hours ago). 45 minutes later I started to feel lousy, dizzy etc. I'm slowly getting better now. Is this anyone else's experience?Is it likely to pass, and it is something I have to look forward to every week, or does your body adjust to it? Am also on 14mg
I had my first shot of TCZ this morning (10 hours ago). 45 minutes later I started to feel lousy, dizzy etc. I'm slowly getting better now. Is this anyone else's experience?Is it likely to pass, and it is something I have to look forward to every week, or does your body adjust to it? Am also on 14mg
Sharitone
in
PMRGCAuk
3 years ago
Join the Virus Watch project ( in the UK)
Anyone in the UK can join the “Virus Watch” research project (coordinated by University College London). Here is the link/ web address http://ucl-virus-watch.net/ My husband and I signed up a month ago - they send weekly emails asking you to fill in details of any possible Covid19 symptoms ( it
Anyone in the UK can join the “Virus Watch” research project (coordinated by University College London). Here is the link/ web address http://ucl-virus-watch.net/ My husband and I signed up a month ago - they send weekly emails asking you to fill in details of any possible Covid19 symptoms ( it
Suzita76
in
PMRGCAuk
3 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Does anyone know whether I will experience steroid withdrawal even though I’m on tocilizumab?
I have tapered down (from 40mg) to 5mg pred. I began a course of weekly TCZ injections 8 weeks ago. I need to stop taking the pred. I’m wary as I have experienced steroid withdrawal on a prior occasion. I am debating whether to keep taking it over Christmas or to stop now… and I’m wondering whether:
I have tapered down (from 40mg) to 5mg pred. I began a course of weekly TCZ injections 8 weeks ago. I need to stop taking the pred. I’m wary as I have experienced steroid withdrawal on a prior occasion. I am debating whether to keep taking it over Christmas or to stop now… and I’m wondering whether:
Erikaknitssocks
in
PMRGCAuk
3 years ago
Summary Paper from Drs, Claire N. Harrison and Donal P. McLornan
Nice summary I just came across from some of the experts. I've included some outtakes I found notable. Lots more in there on R&D for MF. https://onlinelibrary.wiley.com/doi/pdf/10.1111/bjh.16573 From chart, HCT control matters. This was discovered ~2011 and is likely a big part of what we've discussed
Nice summary I just came across from some of the experts. I've included some outtakes I found notable. Lots more in there on R&D for MF. https://onlinelibrary.wiley.com/doi/pdf/10.1111/bjh.16573 From chart, HCT control matters. This was discovered ~2011 and is likely a big part of what we've discussed
EPguy
in
MPN Voice
3 years ago
Tocilizumab cessation.
I posted recently concerning the fear and dread the withdrawal of this excellent treatment causes myself and fellow sufferers of GCA/PMR. To further update I am a constituent of Sajid David and have therefore e-mailed him to express our shared distress at having this treatment given and then taken away
I posted recently concerning the fear and dread the withdrawal of this excellent treatment causes myself and fellow sufferers of GCA/PMR. To further update I am a constituent of Sajid David and have therefore e-mailed him to express our shared distress at having this treatment given and then taken away
AncientMariner
in
PMRGCAuk
3 years ago
Stopping Tocilizumab
My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through
My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through
AncientMariner
in
PMRGCAuk
3 years ago
Bendamustine & Rituximab remission?
How long did it lasted for you? I’m 7 months out & gastric symptoms are coming back.
How long did it lasted for you? I’m 7 months out & gastric symptoms are coming back.
LlHoot
in
Non Hodgkin's Lymphoma Friends
3 years ago
Steroid sparers
I posted a few weeks ago to ask if anyone had been given Mycophenolate so Tocilizumab could be withdrawn. I only got a couple of replies so I guess not many have. I gave them a try and felt as though I was back to pre diagnosis. Rheumatologist said to try again more slowly. Same again. Not for me. I
I posted a few weeks ago to ask if anyone had been given Mycophenolate so Tocilizumab could be withdrawn. I only got a couple of replies so I guess not many have. I gave them a try and felt as though I was back to pre diagnosis. Rheumatologist said to try again more slowly. Same again. Not for me. I
marantha
in
PMRGCAuk
3 years ago
Blood test changes.
67 years old, 3.5 years on Imbruvica. In remission. Last week's blood test had warning flags all over for first time in two years. About half of them flagged. Had major prostate surgery last month at MD ANDESON. Ones I really noticed were NO MONOCYTES, HIGH ATYPICAL LYMPHS, HIGH BASOS, DOUBLING
67 years old, 3.5 years on Imbruvica. In remission. Last week's blood test had warning flags all over for first time in two years. About half of them flagged. Had major prostate surgery last month at MD ANDESON. Ones I really noticed were NO MONOCYTES, HIGH ATYPICAL LYMPHS, HIGH BASOS, DOUBLING
lsutigers2018
in
CLL Support
3 years ago
NHS app health record says my GCA is minor!
I've just downloaded the NHS app and looked at my health record. I am somewhat disturbed to see this: 29 October 2021 Giant cell arteritis without polymyalgia rheumatica Significance: Minor Status: Active I was diagnosed around 4th October after a diagnosis of PMR a week earlier. This entry is after
I've just downloaded the NHS app and looked at my health record. I am somewhat disturbed to see this: 29 October 2021 Giant cell arteritis without polymyalgia rheumatica Significance: Minor Status: Active I was diagnosed around 4th October after a diagnosis of PMR a week earlier. This entry is after
Broseley
in
PMRGCAuk
3 years ago
Pfizer Pill
I received this news via the New York Times which, if true, will be helpful as we learn to live with this wretched disease. A Covid pill developed by Pfizer cuts the risk of hospitalisation or death in vulnerable adults by 89 per cent, according to a clinical trial carried out by the US company. Incidentally
I received this news via the New York Times which, if true, will be helpful as we learn to live with this wretched disease. A Covid pill developed by Pfizer cuts the risk of hospitalisation or death in vulnerable adults by 89 per cent, according to a clinical trial carried out by the US company. Incidentally
Thelmarina
in
PMRGCAuk
3 years ago
Side Effects of Bendamustine?
I am asking for a friend who has follicular lymphoma and has been W&W for nine years. They start Rituxan and Bendamustine next week. With all the treatment I have had, I have never had this one, so I am wondering if you could share what your experiences were. Thanks much.
I am asking for a friend who has follicular lymphoma and has been W&W for nine years. They start Rituxan and Bendamustine next week. With all the treatment I have had, I have never had this one, so I am wondering if you could share what your experiences were. Thanks much.
KevinCLLITP
in
CLL Support
3 years ago
immunohistochemistry need help understanding
I am seeing my doctor on Tuesday but was able to get some results online from my bone marrow biopsy - Additional tests ordered: Cytogenetics and FISH (CLL panel) Can someone help me understand the findings below - thank you Marker Result Description CD20 Positive Pan B Cell Antigen (L26) CD3 T-cells
I am seeing my doctor on Tuesday but was able to get some results online from my bone marrow biopsy - Additional tests ordered: Cytogenetics and FISH (CLL panel) Can someone help me understand the findings below - thank you Marker Result Description CD20 Positive Pan B Cell Antigen (L26) CD3 T-cells
kp58ny
in
CLL Support
3 years ago
INF+ ATO Study, "A knockout combination for MPN stem cells"
Some have likely seen this study. I looked into it some more today and realize it's a neat pre-clinical result. This is just FYI right now but it's an example of potential good things to come. (I just noticed Manouche posted on this last year, anyway maybe some new details here) "JAK2V617F myeloproliferative
Some have likely seen this study. I looked into it some more today and realize it's a neat pre-clinical result. This is just FYI right now but it's an example of potential good things to come. (I just noticed Manouche posted on this last year, anyway maybe some new details here) "JAK2V617F myeloproliferative
EPguy
in
MPN Voice
3 years ago
Alex TLC Digital Community Weekend
The agenda for our weekend is available to view: https://www.alextlc.org/digital-community-weekend-2021/ On Saturday, the Science Day, we have presentations about the new NHS Inherited White Matter Disorders Patient Registry and research updates on the following Leukodystrophies: - AMN & ALD - Alexander's
The agenda for our weekend is available to view: https://www.alextlc.org/digital-community-weekend-2021/ On Saturday, the Science Day, we have presentations about the new NHS Inherited White Matter Disorders Patient Registry and research updates on the following Leukodystrophies: - AMN & ALD - Alexander's
Hidden
Partner
in
Leukodystrophy Support
3 years ago
Intrinsic factor and parietal cell antibody positive but MMA normal is it PA?
I have intrinsic factor abs and anti parietal cells but methylmalonic acid level is normal. B12,folate, hb are all in range.I have Hashis and a range of B12 deficiency systems Could anyone please advise if there is ever a situation when a GP would not prescribe B12 given the ap and IFabs? I am beginning
I have intrinsic factor abs and anti parietal cells but methylmalonic acid level is normal. B12,folate, hb are all in range.I have Hashis and a range of B12 deficiency systems Could anyone please advise if there is ever a situation when a GP would not prescribe B12 given the ap and IFabs? I am beginning
Aumshantii
in
Pernicious Anaemia Society
3 years ago
Androgen Receptor Signalling Inhibitors – Post-Chemotherapy, Pre-Chemotherapy and now in castration sensitive prostate cancer - ERC -6.15.21
Androgen Receptor Signalling Inhibitors – Post-Chemotherapy, Pre-Chemotherapy and now in castration sensitive prostate cancer - Nicholas Mitsiades and Salma Kaochar, Dept. of Medicine and Dept. of Molecular and Cellular Biology, Baylor College of Medicine, Houston,TX 77030. Accepted Manuscript published
Androgen Receptor Signalling Inhibitors – Post-Chemotherapy, Pre-Chemotherapy and now in castration sensitive prostate cancer - Nicholas Mitsiades and Salma Kaochar, Dept. of Medicine and Dept. of Molecular and Cellular Biology, Baylor College of Medicine, Houston,TX 77030. Accepted Manuscript published
cujoe
in
Fight Prostate Cancer
3 years ago
Has anyone achieved a reduction in fatigue from PMR through the introduction of tocilizumab (Actemra) into their treatment regimen?
Lately it seems as though my fatigue and depression are getting worse. I've had PMR for about 3 years now and it seems as though I am going downhill in so far as exhaustion is concerned. I almost have no desire, and to some extent, no ability to get anything done. I have read that the IL6 pathway is
Lately it seems as though my fatigue and depression are getting worse. I've had PMR for about 3 years now and it seems as though I am going downhill in so far as exhaustion is concerned. I almost have no desire, and to some extent, no ability to get anything done. I have read that the IL6 pathway is
Ozark
in
PMRGCAuk
3 years ago
Getting there….🏃♀️
After dealing with cancer, radiotherapy , chemotherapy , a stem cell transplant & a total hip replacement less then 10mts ago - I have just completed week 6 & Run 2! The thought of catching COVID because of my health issues has kept me locked away for nearly 2yrs - getting back out there to run has helped
After dealing with cancer, radiotherapy , chemotherapy , a stem cell transplant & a total hip replacement less then 10mts ago - I have just completed week 6 & Run 2! The thought of catching COVID because of my health issues has kept me locked away for nearly 2yrs - getting back out there to run has helped
SunShineRae
in
Couch to 5K
3 years ago
1
...
18
19
20
...
83
Next page
10
20
30
40
50
60
70
80
Filter results
Clear filters
Posted in
All communities
CLL Support
554 results
PMRGCAuk
204 results
MPN Voice
131 results
View top 10 communities
Sort by
Most Relevant
Newest