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Cutaneous T cell lymphoma (CTCL)
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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
3 months ago
Blood Work
Hello Friends, I asked this question on my original thread but someone suggested I start a new one. I was diagnosed with Autoimmune Atrophic Gastritis 2 weeks ago and have been having a hard time mentally . My family Dr this past Friday sends me the blood tests results and says they cannot comment
Hello Friends, I asked this question on my original thread but someone suggested I start a new one. I was diagnosed with Autoimmune Atrophic Gastritis 2 weeks ago and have been having a hard time mentally . My family Dr this past Friday sends me the blood tests results and says they cannot comment
Canadian77
in
Pernicious Anaemia Society
6 months 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
3 months ago
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RNA Test Outperforms the Fecal Immunochemical Test for Detection of Colorectal Cancer
In the United States, colorectal cancer (CRC) is the second most common cause of cancer deaths when numbers for men and women are combined. It's expected to cause about 52,550 deaths during 2023 https://www.cancer.org/cancer/types/colon-rectal-cancer/about/key-statistics.html As CLL patients, we carry
In the United States, colorectal cancer (CRC) is the second most common cause of cancer deaths when numbers for men and women are combined. It's expected to cause about 52,550 deaths during 2023 https://www.cancer.org/cancer/types/colon-rectal-cancer/about/key-statistics.html As CLL patients, we carry
bennevisplace
in
CLL Support
11 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
4 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
4 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
4 months ago
Stem cell transplant
I just wanted to let everyone know that I made my decision and I’m going through with a SCT. I have been seeing a transplant doctor at Dana Farber in Boston for about a year and he feels I’m strong enough now to have one. Now we have to find a donor and I have to start making preparations. We are shooting
I just wanted to let everyone know that I made my decision and I’m going through with a SCT. I have been seeing a transplant doctor at Dana Farber in Boston for about a year and he feels I’m strong enough now to have one. Now we have to find a donor and I have to start making preparations. We are shooting
Cja1956
in
MPN Voice
4 days ago
Diagnosed with Richters follow up - great news
Late April prior to treatment September after 4 cycles This is an update to my Diagnosed with Richters post a month or so back. I now go to MDA every 28 days and every third visit is a PET/CT scan and bone marrow along with
Late April prior to treatment September after 4 cycles This is an update to my Diagnosed with Richters post a month or so back. I now go to MDA every 28 days and every third visit is a PET/CT scan and bone marrow along with
Louie_CC
in
CLL Support
8 days ago
Finally, weaning off prednisone after 15 years.
I have not posted in a while. About 5 years ago my blood pressure went up (180/110). I was put on over 10 different blood pressure meds. Nothing took it down. Last November I was diagnosed, via kidney biopsy, with something called MGRS (monoclonal gammopathy of renal significance). The illness
I have not posted in a while. About 5 years ago my blood pressure went up (180/110). I was put on over 10 different blood pressure meds. Nothing took it down. Last November I was diagnosed, via kidney biopsy, with something called MGRS (monoclonal gammopathy of renal significance). The illness
phebamom
in
PMRGCAuk
8 days ago
Venetoclax
Hi everyone , I am so glad with this site. My name is Anja, 67 years old , and I live in the Netherlands. I was diagnosed with CLL in september 2010. In 2012 I got FCR for six rounds. After that I was stuffy and it occurred that I had heart failure because of the chemo therapy. It took me years
Hi everyone , I am so glad with this site. My name is Anja, 67 years old , and I live in the Netherlands. I was diagnosed with CLL in september 2010. In 2012 I got FCR for six rounds. After that I was stuffy and it occurred that I had heart failure because of the chemo therapy. It took me years
jroon08
in
CLL Support
21 days ago
Continued Journey
This is day +67 for me since by Bone Marrow Transplant. Happy Labor Day here in the USA. I had been cruising along with a few seemingly minor issues. GI tract at times has been an issue especially with bowel movements. As I was weened off the steroid Prednisone I have recently been put on the steroid
This is day +67 for me since by Bone Marrow Transplant. Happy Labor Day here in the USA. I had been cruising along with a few seemingly minor issues. GI tract at times has been an issue especially with bowel movements. As I was weened off the steroid Prednisone I have recently been put on the steroid
FiArt12X
in
CLL Support
25 days ago
Still Hangin in There
Hi everyone. 9+ years on (take a peek at my bio.) Stage IV pca. I'm still hormone sensitive with undetectable PSA. Living life and enjoying my time with friends and family. In November I will enter year 2 of multiple myeloma DX. Have been through induction but not needing a stem cell transplant
Hi everyone. 9+ years on (take a peek at my bio.) Stage IV pca. I'm still hormone sensitive with undetectable PSA. Living life and enjoying my time with friends and family. In November I will enter year 2 of multiple myeloma DX. Have been through induction but not needing a stem cell transplant
swwags
in
Advanced Prostate Cancer
26 days ago
Richter's and Novel Treatments/Combinations
We've had a few members post about Richter's recently so I thought it might be time for a bit of an update on new treatments. In these reports there is not a lot of information about clonality and which mutations the patients have. Extensive pretesting for these variables as well as the clinical ones
We've had a few members post about Richter's recently so I thought it might be time for a bit of an update on new treatments. In these reports there is not a lot of information about clonality and which mutations the patients have. Extensive pretesting for these variables as well as the clinical ones
Jm954
Administrator
in
CLL Support
1 month ago
Diagnosed with Richters
My history is a CLL diagnosis around Sept of 2016. I started the Ibrutinib/Venetoclax trial at MDA in Jan 2017 achieving MRD U in April 2019. Clear sailing until April ‘22 when my blood test showed .07 CLL cells that doubled every 6 months. Showing no symptoms, my Doc did not recommend treatment.
My history is a CLL diagnosis around Sept of 2016. I started the Ibrutinib/Venetoclax trial at MDA in Jan 2017 achieving MRD U in April 2019. Clear sailing until April ‘22 when my blood test showed .07 CLL cells that doubled every 6 months. Showing no symptoms, my Doc did not recommend treatment.
Louie_CC
in
CLL Support
1 month 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
5 months ago
11 months Post SCT
I’ve been wanting to update my Stem Cell Transplant journey with good news and today I was going to post that, instead I’ve been told that a lot of my lymph nodes are enlarged again. It’s so disappointing to say the least, not what I was expecting as I feel quite well and most of the GVHD issues have
I’ve been wanting to update my Stem Cell Transplant journey with good news and today I was going to post that, instead I’ve been told that a lot of my lymph nodes are enlarged again. It’s so disappointing to say the least, not what I was expecting as I feel quite well and most of the GVHD issues have
Billarina
in
CLL Support
2 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
6 months ago
SCT journey update No.4
Hi all, just to give you an update on my journey towards my *Allogenic Stem cell Transplant. Last tests @ Addenbrookes yesterday, was a very early start as Lung function testing was @ 8.30am and it’s about 2 hour journey. Wife and I were up about 3-4am ( to be fair, couldn’t sleep anyway ) The drive
Hi all, just to give you an update on my journey towards my *Allogenic Stem cell Transplant. Last tests @ Addenbrookes yesterday, was a very early start as Lung function testing was @ 8.30am and it’s about 2 hour journey. Wife and I were up about 3-4am ( to be fair, couldn’t sleep anyway ) The drive
LFCLove
in
MPN Voice
3 months ago
ASXL1 mutation 39% Worried about MF turning into leukemia
Hello Everyone, I have almost taken Rux for more than 7 years. and added interferon during the time. Actually my platelets are already very low now because of prolonged suppression of signaling pathways and the use of interferon. China site only available Rux in the markets. and I also have the ASXL1
Hello Everyone, I have almost taken Rux for more than 7 years. and added interferon during the time. Actually my platelets are already very low now because of prolonged suppression of signaling pathways and the use of interferon. China site only available Rux in the markets. and I also have the ASXL1
merlisa
in
Fight MPN
3 months ago
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