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Cutaneous T cell lymphoma (CTCL)
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You've hit a milestone! 1000 of you now have joined the PMRGCAuk HU community
Congratulations for building a true PMRGCAuk health movement in HealthUnlocked! You've built the biggest Polymyalgia Rheumatica and Giant Cell Arteritis community in the world. Whenever you write a post, ask a question or reply to someone, you are touching the lives of other people with Polymyalgia
Congratulations for building a true PMRGCAuk health movement in HealthUnlocked! You've built the biggest Polymyalgia Rheumatica and Giant Cell Arteritis community in the world. Whenever you write a post, ask a question or reply to someone, you are touching the lives of other people with Polymyalgia
HealthUnlocked
HealthUnlocked
in
PMRGCAuk
10 years ago
B12 injections
Hi..... has anyone had vitamin B12 injections ? Was it methylcobalamin or hydroxocobalamin B12? Did it help? Thanks
Hi..... has anyone had vitamin B12 injections ? Was it methylcobalamin or hydroxocobalamin B12? Did it help? Thanks
hessy
in
Fibromyalgia Action UK
10 years ago
Dealing with sickle cell anaemia.
ever since I knew I had sickle cell, I've been taking much of folic acid. How does the folic acid help sustain me?
ever since I knew I had sickle cell, I've been taking much of folic acid. How does the folic acid help sustain me?
Indahi-keith
in
MPN Voice
10 years ago
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Paperback now available via Amazon
Hi everyone, This is just to let you know that the book "Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide" is now available in paperback via Amazon. The link is http://www.amazon.co.uk/Polymyalgia-Rheumatica-Giant-Cell-Arteritis/dp/1500713406/ref=sr_1_12?s=books&ie=UTF8&qid=1409228415&
Hi everyone, This is just to let you know that the book "Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide" is now available in paperback via Amazon. The link is http://www.amazon.co.uk/Polymyalgia-Rheumatica-Giant-Cell-Arteritis/dp/1500713406/ref=sr_1_12?s=books&ie=UTF8&qid=1409228415&
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
10 years ago
For the newly diagnosed and those needing treatment
Rebecca Bechhold, MD has just blogged on the Cancer Network about the different and all equally right approaches of approaching cancer treatment. While written for medicos, it is still a relevant read for those of us facing treatment: http://www.cancernetwork.com/blog/nobodys-poster-child (Free membership
Rebecca Bechhold, MD has just blogged on the Cancer Network about the different and all equally right approaches of approaching cancer treatment. While written for medicos, it is still a relevant read for those of us facing treatment: http://www.cancernetwork.com/blog/nobodys-poster-child (Free membership
AussieNeil
Partner
in
CLL Support
10 years ago
Tiredness
Please can you good folk tell me whether extreme tiredness is linked to reduction of preds. It has taken a while but I am now down to 12.5 with no problems with pain. Fluid retention is not good (maybe due somewhat to the heat) and my hot flushes are worse. But my main concern is that I keep falling
Please can you good folk tell me whether extreme tiredness is linked to reduction of preds. It has taken a while but I am now down to 12.5 with no problems with pain. Fluid retention is not good (maybe due somewhat to the heat) and my hot flushes are worse. But my main concern is that I keep falling
patdencass
in
PMRGCAuk
10 years ago
FISH Results; Co-existance of Trisomy 12 & 13q deletion
Hello, I have been recently diagnosed with CLL and have received the results of my bone marrow biopsy and FISH test. "These FISH studies detected Trisomy 12 and deletion of one or both 13q loci in 40% of interphase nuclei." I haven't been able to find much information on the significance of having
Hello, I have been recently diagnosed with CLL and have received the results of my bone marrow biopsy and FISH test. "These FISH studies detected Trisomy 12 and deletion of one or both 13q loci in 40% of interphase nuclei." I haven't been able to find much information on the significance of having
kpminn
in
CLL Support
10 years ago
News flash—the way most oncologists create income is by giving chemotherapy
This very US centric article by Rebecca Bechhold, MD on the Cancer Network (free membership) expands on recent topics in the news and here on a study that found that cancer centre advertising emphasises positive outcomes and says nothing about side effects or costs and direct-to-consumer marketing of
This very US centric article by Rebecca Bechhold, MD on the Cancer Network (free membership) expands on recent topics in the news and here on a study that found that cancer centre advertising emphasises positive outcomes and says nothing about side effects or costs and direct-to-consumer marketing of
AussieNeil
Partner
in
CLL Support
10 years ago
Help, FCR OR BR?
My oncologist has telephoned me today giving me an option of either FCR or BR. As I am 11q del I thought I had only one option! She told me that the FLAIR trial will be starting in 6-8 weeks time but as my WBC is at 387 and my Hg is 95 she would like me to start treatment now. I am 52 years old now and
My oncologist has telephoned me today giving me an option of either FCR or BR. As I am 11q del I thought I had only one option! She told me that the FLAIR trial will be starting in 6-8 weeks time but as my WBC is at 387 and my Hg is 95 she would like me to start treatment now. I am 52 years old now and
flutterbye
in
CLL Support
10 years ago
Rapid Generation of Virus-Specific T Cells Helps Fight Off Infection in Immunocompromised Patients
The lengthy, complex, and costly process required to produce target specific T-Cells to fight cancers and viruses is a huge barrier that needs to be overcome if this technique is ever going to be more than a laboratory curiosity that benefits only a select few patients. Despite this, researchers continue
The lengthy, complex, and costly process required to produce target specific T-Cells to fight cancers and viruses is a huge barrier that needs to be overcome if this technique is ever going to be more than a laboratory curiosity that benefits only a select few patients. Despite this, researchers continue
AussieNeil
Partner
in
CLL Support
10 years ago
UK Prioritisation of Patient Need Survey
Leukaemia & Lymphoma Research is undertaking its most comprehensive ever UK survey of the needs of patients with blood cancers and related blood disorders. http://leukaemialymphomaresearch.org.uk/patient-survey It is hoped that the online questionnaire, which opened on 2 July and runs for two months
Leukaemia & Lymphoma Research is undertaking its most comprehensive ever UK survey of the needs of patients with blood cancers and related blood disorders. http://leukaemialymphomaresearch.org.uk/patient-survey It is hoped that the online questionnaire, which opened on 2 July and runs for two months
HAIRBEAR_UK
Administrator
in
CLL Support
10 years ago
Neurologist saying B12 is a 'red herring' - what should I do? :/
Sorry if this seems a bit too much repeated info on my case, but wanted to include some past info, so I could ask an opinion on the problem I have .... In march I started to experience strong numbness and tingling in my left hand to the point it was hard to feel things - (have had multiple occurrences
Sorry if this seems a bit too much repeated info on my case, but wanted to include some past info, so I could ask an opinion on the problem I have .... In march I started to experience strong numbness and tingling in my left hand to the point it was hard to feel things - (have had multiple occurrences
laurabeebee
in
Pernicious Anaemia Society
10 years ago
Bone marrow transplant with MF
I have been recently diagnosed with MF and am in the initial phase (being treated with PEGASYS). In your recent MF leaflet the article appears to indicated that a bone marrow transplant is a 'last resort' ('not commonly recommended'.... advanced disease). My hermatologist here in France appears to want
I have been recently diagnosed with MF and am in the initial phase (being treated with PEGASYS). In your recent MF leaflet the article appears to indicated that a bone marrow transplant is a 'last resort' ('not commonly recommended'.... advanced disease). My hermatologist here in France appears to want
crapaud
in
MPN Voice
10 years ago
Plymouth & Cornwall Support
Dear All Re: - Polymyalgia Rheumatica – Giant Cell Arteritis – Temporal Arteritis support meeting for the Devon & Cornwall Area The next support meeting for PMR and PMRGCA for the Devon & Cornwall area will be held on the following date? The nearest meeting so far has been Taunton so we have now started
Dear All Re: - Polymyalgia Rheumatica – Giant Cell Arteritis – Temporal Arteritis support meeting for the Devon & Cornwall Area The next support meeting for PMR and PMRGCA for the Devon & Cornwall area will be held on the following date? The nearest meeting so far has been Taunton so we have now started
Hidden
in
PMRGCAuk
10 years ago
GvHD of the lungs
Hi all I am new to this site. I am not posting about myself but about my 32 year old brother. 9 years ago he had a stem cell transplant to treat leukaemia (I was his donor), which has been in remission ever since. We have been lucky enough to have 9 good years during which time he has worked full time
Hi all I am new to this site. I am not posting about myself but about my 32 year old brother. 9 years ago he had a stem cell transplant to treat leukaemia (I was his donor), which has been in remission ever since. We have been lucky enough to have 9 good years during which time he has worked full time
elliemh
in
Lung Conditions Community Forum
10 years ago
Achilles' heel to lower defenses of antibiotic-resistant bacteria found
[i]'Researchers at the University of East Anglia (UAE) in England have now uncovered an Achille's heel in the bacterial cell defenses that could mean that bacteria wouldn't develop drug-resistance in the first place. : : "The really exciting thing about this research is that new drugs will specifically
[i]'Researchers at the University of East Anglia (UAE) in England have now uncovered an Achille's heel in the bacterial cell defenses that could mean that bacteria wouldn't develop drug-resistance in the first place. : : "The really exciting thing about this research is that new drugs will specifically
AussieNeil
Partner
in
CLL Support
10 years ago
Plymouth Cornwall & South Devon Support Meeting.
The next meeting of the Plymouth, West Devon and Cornwall Support Group for Polymyalgia Rheumatica and Giant Cell Arteritis. is to be held at Community room No 7 Pendeen Close Southway Plymouth PL6 6SB on the 30th July at 2pm Wendy from PMRGCA will be coming as well to offer her support. For more details
The next meeting of the Plymouth, West Devon and Cornwall Support Group for Polymyalgia Rheumatica and Giant Cell Arteritis. is to be held at Community room No 7 Pendeen Close Southway Plymouth PL6 6SB on the 30th July at 2pm Wendy from PMRGCA will be coming as well to offer her support. For more details
Hidden
in
PMRGCAuk
10 years ago
Hello everyone I have been away for 4 weeks so am catching up at the moment. I have had PMR for 7 yrs am on 10g pred, propranolol , thyroxin
and amitriptilyne 20gs. However recently I find that if I take amitryptiline after 7 30pm I wake in the night having hallucinations which is quite disturbing. Is any one else taking this med and getting the same problem I am fine if I take it on time.Thank you all for your helpful tips in the past Kathy
and amitriptilyne 20gs. However recently I find that if I take amitryptiline after 7 30pm I wake in the night having hallucinations which is quite disturbing. Is any one else taking this med and getting the same problem I am fine if I take it on time.Thank you all for your helpful tips in the past Kathy
lucky12
in
PMRGCAuk
10 years ago
Why do doctors keep refering to 'temporal' arteritis instead of using the term 'giant cell' arteritis?
I read that giant cells can inflame any artery, causing lesions, blockages and damage to vital organs which can result in disability or death. This title is a misnomer and should be challenged! My very ignorant GP said I need only be concerned about having GCA headaches. When I said I had heart pain
I read that giant cells can inflame any artery, causing lesions, blockages and damage to vital organs which can result in disability or death. This title is a misnomer and should be challenged! My very ignorant GP said I need only be concerned about having GCA headaches. When I said I had heart pain
Hidden
in
PMRGCAuk
10 years ago
Am I just just b12 deficient or PA? So confused what to do next :(
Can anyone help me please, I am so confused as what to do next.... Over the years I have had periods of numbness, pins and needles in my hands and feet, tiredness, mind fog etc which drs tests usually brought down to iron/folate deficiency. However this time was the worst it's been. In march I started
Can anyone help me please, I am so confused as what to do next.... Over the years I have had periods of numbness, pins and needles in my hands and feet, tiredness, mind fog etc which drs tests usually brought down to iron/folate deficiency. However this time was the worst it's been. In march I started
laurabeebee
in
Pernicious Anaemia Society
10 years ago
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