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Very poorly newbie - Desperate for help
Hello everyone... I've been meaning to post on here for a long time but get extremely overwhelmed and have so much that has happened/is happening that I don't know where to start, trying to gather all the information and put it in to words with declining cognitive impairment and extreme fatigue is so
Hello everyone... I've been meaning to post on here for a long time but get extremely overwhelmed and have so much that has happened/is happening that I don't know where to start, trying to gather all the information and put it in to words with declining cognitive impairment and extreme fatigue is so
Flossles
in
Thyroid UK
6 years ago
PA when IFA and PCA test results are negative
Hi All, I commented on a recent thread that I thought some people had PA even when Intrinsic Factor Antibody test and Parietal Cell Antibody test results were both negative. I speculated that this could be due to an immunoglobulin deficiency leading to inability to produce certain antibodies. I've now
Hi All, I commented on a recent thread that I thought some people had PA even when Intrinsic Factor Antibody test and Parietal Cell Antibody test results were both negative. I speculated that this could be due to an immunoglobulin deficiency leading to inability to produce certain antibodies. I've now
Sleepybunny
in
Pernicious Anaemia Society
6 years ago
GCA and tocilizumab withdrawal
Has anyone given up taking tocilizumab (Actemra) and remained in remission or did you get GCA back. Is there a program to reduce injections in stages?
Has anyone given up taking tocilizumab (Actemra) and remained in remission or did you get GCA back. Is there a program to reduce injections in stages?
christine2715
in
PMRGCAuk
6 years ago
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Stem Cell Transplants
https://mpnforum.com/nicrev Hope this link works. Interesting interview about Stem Cell Transplant risk:reward and timing. I thought quite reassuring, especially since odds improving all the time. Five year survival rates are based on transplants pre 2013. The odds and risks should be even better by
https://mpnforum.com/nicrev Hope this link works. Interesting interview about Stem Cell Transplant risk:reward and timing. I thought quite reassuring, especially since odds improving all the time. Five year survival rates are based on transplants pre 2013. The odds and risks should be even better by
Paul123456
in
MPN Voice
6 years ago
Sickle cell and?
I have sickle cell disease and just found out I have chronic fatigue syndrome also called ME. I wanted to find out what other conditions people are dealing with plus sickle cell and how you cope. I have 3 children so I guess you will have an idea as to how I am struggling to cope.
I have sickle cell disease and just found out I have chronic fatigue syndrome also called ME. I wanted to find out what other conditions people are dealing with plus sickle cell and how you cope. I have 3 children so I guess you will have an idea as to how I am struggling to cope.
jo19
in
Sickle Cell Society
6 years ago
Waking after neurotoxicity
My dad suffered from neurotoxicity, pneumonia, and a fungal infection after Stem Cell Transplant. He had a unexpected and terrible reaction to anti-rejection medications and has been in a coma/ICU for 6 weeks. He recently emerged from coma is very weak and is still not able to speak or utter any sound
My dad suffered from neurotoxicity, pneumonia, and a fungal infection after Stem Cell Transplant. He had a unexpected and terrible reaction to anti-rejection medications and has been in a coma/ICU for 6 weeks. He recently emerged from coma is very weak and is still not able to speak or utter any sound
skatergirl
in
ICUsteps
6 years ago
Interesting Question for the Psychiatrists and Geneticists Out There
I have always wanted to ask these two closely related questions; especially since my Psychiatrist told me that he had never heard of any situation even remotely close to mine and/or of any studies related at all to it. I am now a 54-year-old man with ADD. My symptoms are mainly "tactile" and "attention
I have always wanted to ask these two closely related questions; especially since my Psychiatrist told me that he had never heard of any situation even remotely close to mine and/or of any studies related at all to it. I am now a 54-year-old man with ADD. My symptoms are mainly "tactile" and "attention
strawbjt
in
CHADD's Adult ADHD Support
6 years ago
"9 out of 10 doctors on our payroll, recommend this product!" ~ Big Pharma : (
Oh Goody!!! Bio-Thera Solutions, a global biotechnology company based in Guangzhou, China, recently announced that it has initiated a phase 1 clinical trial for BAT1806, a proposed tocilizumab (Actemra) biosimilar. Just what the world needs another Valsartan disaster! https://www.centerforbiosimilars.com
Oh Goody!!! Bio-Thera Solutions, a global biotechnology company based in Guangzhou, China, recently announced that it has initiated a phase 1 clinical trial for BAT1806, a proposed tocilizumab (Actemra) biosimilar. Just what the world needs another Valsartan disaster! https://www.centerforbiosimilars.com
Hidden
in
PMRGCAuk
6 years ago
Sickle Cell News - July-September 2018 Edition
Major Stories: 1. Trailblazing Myth-Breaker: Police Sergeant Winston Mmagu lives with sickle cell anaemia – how, how does he cope?! 2. Canada Celebrates 1st official Sickle Cell Day. 3. Genetics Professor Cyril Otoikhian throws damper on World Sickle Cell Day celebrations in Nigeria. Universally
Major Stories: 1. Trailblazing Myth-Breaker: Police Sergeant Winston Mmagu lives with sickle cell anaemia – how, how does he cope?! 2. Canada Celebrates 1st official Sickle Cell Day. 3. Genetics Professor Cyril Otoikhian throws damper on World Sickle Cell Day celebrations in Nigeria. Universally
sicklecellnews
in
Sickle Cell Society
6 years ago
10 years ago today I received my allogeneic hematopoietic stem cell transplant (HSCT) for my CLL
Hi, I just posted a very brief blog update on my 10 year anniversary of my first radical move to save my life. You can read it about here: https://cllsociety.org/2018/07/10-years-ago-today-i-received-my-allogeneic-hematopoietic-stem-cell-transplant-hsct-for-my-cll-chronic-lymphocytic-leukemia/ Since
Hi, I just posted a very brief blog update on my 10 year anniversary of my first radical move to save my life. You can read it about here: https://cllsociety.org/2018/07/10-years-ago-today-i-received-my-allogeneic-hematopoietic-stem-cell-transplant-hsct-for-my-cll-chronic-lymphocytic-leukemia/ Since
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
GCA and clinical trials
I was just diagnosed Great cell Arteritise, I am currently on prednisone. I have an opportunity to joint a clinical trial group, that combines prednisone and Stelara. Has anyone had any experience with clinical trial using drug combinations?
I was just diagnosed Great cell Arteritise, I am currently on prednisone. I have an opportunity to joint a clinical trial group, that combines prednisone and Stelara. Has anyone had any experience with clinical trial using drug combinations?
golf26
in
PMRGCAuk
6 years ago
left shoulder hurting again
been on pred since oct 2016, 40 to start, then tapered well to 10 up til august 2017, rheu my wanted to keep me at that dose of 10 until into new year 2018, as my son who was diagnosed with multiple myeloma was having stem cell transplant in jan 2018, she said with the additional stress, did not want
been on pred since oct 2016, 40 to start, then tapered well to 10 up til august 2017, rheu my wanted to keep me at that dose of 10 until into new year 2018, as my son who was diagnosed with multiple myeloma was having stem cell transplant in jan 2018, she said with the additional stress, did not want
arvine
in
PMRGCAuk
6 years ago
GCA and people not understanding
I have just come back from a wonderful but tiring holiday in Cornwall. I am so much better now I am on Tocilizumab but still not my old self. This was the first time I have been taking it fortnightly, by injection. rather than weekly and I was told I was not to do too much. I had a long day visiting
I have just come back from a wonderful but tiring holiday in Cornwall. I am so much better now I am on Tocilizumab but still not my old self. This was the first time I have been taking it fortnightly, by injection. rather than weekly and I was told I was not to do too much. I had a long day visiting
christine2715
in
PMRGCAuk
6 years ago
Sickle Cell trait pain
I am a 26 year old female. I was told that I carried the sickle cell trait and I’m anemic. I am in so much pain to where my body hurts. I take iron and B12 faithfully but I can’t get answers from anyone. I’m always exhausted and I have so much pain in my joints. My stomach hurts like hell. Is sickle
I am a 26 year old female. I was told that I carried the sickle cell trait and I’m anemic. I am in so much pain to where my body hurts. I take iron and B12 faithfully but I can’t get answers from anyone. I’m always exhausted and I have so much pain in my joints. My stomach hurts like hell. Is sickle
MrsReese
in
Sickle Cell Society
6 years ago
New here - advice needed please!
Hi, is a positive gastric parietal cell antibody test plus ongoing anaemia enough for a diagnosis of pernicious anaemia, even if serum B12 is in range?
Hi, is a positive gastric parietal cell antibody test plus ongoing anaemia enough for a diagnosis of pernicious anaemia, even if serum B12 is in range?
barton444
in
Pernicious Anaemia Society
6 years ago
Intrinsic Factor vs Parietal Cell Antibodies
If a person tested positive for the intrinsic factor antibody but negative to the parietal cell antibody, would that mean that the parietal cells in the stomach are not under attack, only the intrinsic factor that those cells produce? And would that mean that the stomach might be still producing acid
If a person tested positive for the intrinsic factor antibody but negative to the parietal cell antibody, would that mean that the parietal cells in the stomach are not under attack, only the intrinsic factor that those cells produce? And would that mean that the stomach might be still producing acid
topher2018
in
Pernicious Anaemia Society
6 years ago
And the good news is . . .
It took just 10 minutes final assessment yesterday for Keith (hospital rheumatologist) to tell me that Giant Cell Arteritis (GCA) is over and the lack of headaches during the final months suggests there will not be any flares. It took 18 months tapering to wipe off the slate. He predicted this, saying
It took just 10 minutes final assessment yesterday for Keith (hospital rheumatologist) to tell me that Giant Cell Arteritis (GCA) is over and the lack of headaches during the final months suggests there will not be any flares. It took 18 months tapering to wipe off the slate. He predicted this, saying
sondya
in
PMRGCAuk
6 years ago
I feel sad and alone
Hello, It has been about a year since I posted here for the first time and this is the second time. I have COPD from the complication called GVHD from my stem cell transplant for my lukimia. It has been getting worse and I was in hospital a few times last year and twice already this year. Last year I
Hello, It has been about a year since I posted here for the first time and this is the second time. I have COPD from the complication called GVHD from my stem cell transplant for my lukimia. It has been getting worse and I was in hospital a few times last year and twice already this year. Last year I
mnonchan
in
Lung Conditions Community Forum
6 years ago
Dovetailing
Wow getting red hair to warn bad news to stay away is certainly working. Saw osteo surgeon again today regarding the initial hip pain and looked at all scan and MRI results. Seeing as I had a bone marrow transplant and radiation 27 years ago, which made me post menopausal, I have really good bones for
Wow getting red hair to warn bad news to stay away is certainly working. Saw osteo surgeon again today regarding the initial hip pain and looked at all scan and MRI results. Seeing as I had a bone marrow transplant and radiation 27 years ago, which made me post menopausal, I have really good bones for
Angiejnz
in
PMRGCAuk
6 years ago
Breakthrough therapy saves Mike's life - reports of innovative precision medicines for cancers from ASCO in Daily Mail
One man to have already benefited from the advances in precision medicine is leukaemia sufferer Mike Brandon. The 34-year-old from Bristol was desperately ill when he underwent pioneering CAR T therapy in the US city of Philadelphia in 2016. Mike was suffering from chronic lymphocytic leukaemia (
One man to have already benefited from the advances in precision medicine is leukaemia sufferer Mike Brandon. The 34-year-old from Bristol was desperately ill when he underwent pioneering CAR T therapy in the US city of Philadelphia in 2016. Mike was suffering from chronic lymphocytic leukaemia (
HAIRBEAR_UK
in
Leukaemia Support
6 years ago
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