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NICE are looking for patient experts for the NICE Scientific Advisory Panel for GCA
The experience we are looking for in these patient experts - It could also involve attending a meeting in London at some stage. We are looking for someone with Giant Cell Arteritis who is not yet in remission (but has relapsing disease) and has been on glucocorticoid-based treatment long-term and is
The experience we are looking for in these patient experts - It could also involve attending a meeting in London at some stage. We are looking for someone with Giant Cell Arteritis who is not yet in remission (but has relapsing disease) and has been on glucocorticoid-based treatment long-term and is
John_Mills
Vasculitis UK
in
Vasculitis UK
7 years ago
NICE approves Tocilizumab for Giant Cell Arteritis!
PMRGCAuk is delighted to announce that today is a really big day! NICE, the National Institute of Health and Clinical Excellence, has approved the use of tocilizumab on the second round of consultation, subject to their final appraisal report on 22 March. It will only be available for relapsing and refractory
PMRGCAuk is delighted to announce that today is a really big day! NICE, the National Institute of Health and Clinical Excellence, has approved the use of tocilizumab on the second round of consultation, subject to their final appraisal report on 22 March. It will only be available for relapsing and refractory
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
7 years ago
Corticoid-sparing agents
Therapeutic Advances in Chronic Disease Update on the management of giant cell arteritis Janet Roberts, Alison Clifford First Published March 28, 2017 Review Article Review of corticoid-sparing agents.
Therapeutic Advances in Chronic Disease Update on the management of giant cell arteritis Janet Roberts, Alison Clifford First Published March 28, 2017 Review Article Review of corticoid-sparing agents.
LCHRISTOP10
in
PMRGCAuk
7 years ago
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New to GCA
Just got diagnosed with Giant cell arteritis. Have so many questions and feeling scared. Did the pills help? How long have you been on them? Do you get to a point that you are good and you are cured? Please advise..
Just got diagnosed with Giant cell arteritis. Have so many questions and feeling scared. Did the pills help? How long have you been on them? Do you get to a point that you are good and you are cured? Please advise..
viamonv
in
PMRGCAuk
7 years ago
Looks like I need to watch what I say
I like to share my experiences, what I do and how I feel. Whenever that happens it opens up a whole world of replies. It looks like my last post was a step to far for this forum. I am not sorry for what I said, but I will refrain from talking about my experiences in life with PMR. For those of us that
I like to share my experiences, what I do and how I feel. Whenever that happens it opens up a whole world of replies. It looks like my last post was a step to far for this forum. I am not sorry for what I said, but I will refrain from talking about my experiences in life with PMR. For those of us that
JulianJ
in
PMRGCAuk
7 years ago
Websites - useful stuff, articles, resources
I've been keeping a Word doc on articles that I knew I'd want to refer back to. Not sure if anyone interested, but here it is. Please forgive the format, I didn't know how to add a Word doc so I copied and pasted. . Articles on: Few side effects due to PMR compared with an age-matched cohort not taking
I've been keeping a Word doc on articles that I knew I'd want to refer back to. Not sure if anyone interested, but here it is. Please forgive the format, I didn't know how to add a Word doc so I copied and pasted. . Articles on: Few side effects due to PMR compared with an age-matched cohort not taking
Insight329
in
PMRGCAuk
7 years ago
Steroid withdrawal symptoms
Hi, I'm new to this, came off steroids after three and a half years. I had giant cell arteritis and polymialgia have aching arms and sometimes legs very stiff, seen GP today who suggested it was probably "my age" I'm 72 - do they not accept that it could be withdrawal symptoms.? Anyone else has this
Hi, I'm new to this, came off steroids after three and a half years. I had giant cell arteritis and polymialgia have aching arms and sometimes legs very stiff, seen GP today who suggested it was probably "my age" I'm 72 - do they not accept that it could be withdrawal symptoms.? Anyone else has this
Jcmcd
in
PMRGCAuk
7 years ago
Can medicine side effects start even after being on the drugs for a long time?
Hey everyone I am having to rethink what I thought was a quick bout of gastro
enteritis
. I feel constantly nauseous but no vomiting. Dry heaves in the morning and dry mouth. Even when I looked at my mtx last week I felt sick! But this doesn’t seem to correlate with when I take it.
Hey everyone I am having to rethink what I thought was a quick bout of gastro
enteritis
. I feel constantly nauseous but no vomiting. Dry heaves in the morning and dry mouth. Even when I looked at my mtx last week I felt sick! But this doesn’t seem to correlate with when I take it.
Bon1
in
NRAS
7 years ago
Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. Kate Gilbert PhD
Just finished this book... I HIGHLY recommend to someone newly diagnosed like me!
Just finished this book... I HIGHLY recommend to someone newly diagnosed like me!
Hidden
in
PMRGCAuk
7 years ago
Tocilizumab is not approved by NHS England for GCA on cost grounds
I am very sorry to have to share the news that NICE, the National Institute for Health and Clinical Excellence, has rejected approval of tocilizumab for GCA. Their decision is open to consultation, and we would like as many GCA patients as possible to comment on their website about this decision. Tocilizumab
I am very sorry to have to share the news that NICE, the National Institute for Health and Clinical Excellence, has rejected approval of tocilizumab for GCA. Their decision is open to consultation, and we would like as many GCA patients as possible to comment on their website about this decision. Tocilizumab
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
7 years ago
2017 sees several new drugs for rheumatic illnesses - including GCA
2017 has been a good year for new drugs for inflammatory rheumatoid conditions, and at last tocilizumab has been approved by the FDA in the US for Giant Cell Arteritis. Let's hope that before long it's approved by NICE for the UK too! http://bit.ly/2z94Pxi
2017 has been a good year for new drugs for inflammatory rheumatoid conditions, and at last tocilizumab has been approved by the FDA in the US for Giant Cell Arteritis. Let's hope that before long it's approved by NICE for the UK too! http://bit.ly/2z94Pxi
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
7 years ago
Giant Cell Arteritis - Tocilizumab - NICE
If you have had any experience of being treated with Tocilizumab for GCA/TA - favourable or unfavourable then please can you contact, me, John Mills ASAP John.mills@vasculitis.org.uk - the NICE assessment committee meets next week and I would like some anecdotal evidence to present at the meeting. Thank
If you have had any experience of being treated with Tocilizumab for GCA/TA - favourable or unfavourable then please can you contact, me, John Mills ASAP John.mills@vasculitis.org.uk - the NICE assessment committee meets next week and I would like some anecdotal evidence to present at the meeting. Thank
John_Mills
Vasculitis UK
in
Vasculitis UK
7 years ago
GCA and Tocilizumab
I am taking the above for GCA and have had two infusions and two injections. My latest bloods are great re CRP and ESR but I now have high cholesterol - 7 - not sure how bad 7 is and whether the drug has caused it. I have never had high cholesterol before. Also I have a bad cough, which I think I caught
I am taking the above for GCA and have had two infusions and two injections. My latest bloods are great re CRP and ESR but I now have high cholesterol - 7 - not sure how bad 7 is and whether the drug has caused it. I have never had high cholesterol before. Also I have a bad cough, which I think I caught
christine2715
in
PMRGCAuk
7 years ago
Hot flushes (and gratuitous baby photo).
I know we've discussed this before and I am much more in control of hot flushes now. I was wondering.... I moved smoothly from menopausal hot flushes to steroidal (or is it PMR I forget) flushes and now get one or 2 flushes in 24 hours, always one once I have got up for the loo around 6/7am. Do the
I know we've discussed this before and I am much more in control of hot flushes now. I was wondering.... I moved smoothly from menopausal hot flushes to steroidal (or is it PMR I forget) flushes and now get one or 2 flushes in 24 hours, always one once I have got up for the loo around 6/7am. Do the
IdasMum
in
PMRGCAuk
7 years ago
PMR / CRA assesment
I have had complete blood work up relative to a PMR ~ ESR 61 2-30mm/hr; LO Hemoglobin, Hematocrit, RBC, Albumin ~ HI Neutrophils, Leukocyte Esterase, Alpha 1 Globulin. Rest of flags ok. There must be food, exercise to bring these in line without use of steroids
I have had complete blood work up relative to a PMR ~ ESR 61 2-30mm/hr; LO Hemoglobin, Hematocrit, RBC, Albumin ~ HI Neutrophils, Leukocyte Esterase, Alpha 1 Globulin. Rest of flags ok. There must be food, exercise to bring these in line without use of steroids
hedgehog8
in
PMRGCAuk
7 years ago
More seizures!!
Hi all thought i would bring you up to date as not posted for a while. After having a seizure in feb I was told it could be a one off, no such luck as had another in june again at night and almost the same time as before! They kept me in hospital for a few days so I could see the Neurologist, bit of
Hi all thought i would bring you up to date as not posted for a while. After having a seizure in feb I was told it could be a one off, no such luck as had another in june again at night and almost the same time as before! They kept me in hospital for a few days so I could see the Neurologist, bit of
jlyndauk2002
in
PMRGCAuk
7 years ago
Dysentery anyone?? 😳
Half an hour later the doctor turns up to check and says she thinks it is gastro
enteritis
of some sort and she can't see a cut.
Half an hour later the doctor turns up to check and says she thinks it is gastro
enteritis
of some sort and she can't see a cut.
Mifford
in
LUPUS UK
7 years ago
Running with stress incontinence
Not long after this I was laid low by a severe bout of gastro-
enteritis
or food poisoning. I spent two weeks on the loo, and the diarrhoea had blood in it. The gastro cleared up eventually but the blood didn’t.
Not long after this I was laid low by a severe bout of gastro-
enteritis
or food poisoning. I spent two weeks on the loo, and the diarrhoea had blood in it. The gastro cleared up eventually but the blood didn’t.
SavageMyrtle
Graduate
in
Couch to 5K
7 years ago
I'm new here !!!
Hello everyone, I have had IBS for about twenty years, it started after gastro
enteritis
...most of the time I have coped with various treatments,medicine and herbal stuff.
Hello everyone, I have had IBS for about twenty years, it started after gastro
enteritis
...most of the time I have coped with various treatments,medicine and herbal stuff.
Samkav
in
IBS Network
7 years ago
GCA and Tocilizumab
I have just heard that I have funding and approval from the NHS to take Tocilizumab and will be having my first infusion this week or the week after. Then I have weekly injections after. I wondered if anyone knew if there are any immediate effects. Also do you go on taking other medications. I am on
I have just heard that I have funding and approval from the NHS to take Tocilizumab and will be having my first infusion this week or the week after. Then I have weekly injections after. I wondered if anyone knew if there are any immediate effects. Also do you go on taking other medications. I am on
christine2715
in
PMRGCAuk
7 years ago
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