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Giant Cell Arteritis and Tocilizumab Patient Experience Needed
If you have been treated with Tocilizumab for Giant Cell Arteritis VUK would like to hear of your experiences both good and bad. Please contact John Mills email John.mills@vasculitis.org.uk as soon as possible
If you have been treated with Tocilizumab for Giant Cell Arteritis VUK would like to hear of your experiences both good and bad. Please contact John Mills email John.mills@vasculitis.org.uk as soon as possible
Suzym2u
Vasculitis UK
in
Vasculitis UK
7 years ago
For those diagnosed with Giant Cell Arteritis - this was tweeted just a few minutes ago
A breakthrough in the treatment of GCA @RheumatologyUK @PMRGCAuk @vascuk Please follow this link https://www.ncbi.nlm.nih.gov/pubmed/28745999
A breakthrough in the treatment of GCA @RheumatologyUK @PMRGCAuk @vascuk Please follow this link https://www.ncbi.nlm.nih.gov/pubmed/28745999
Suzym2u
Vasculitis UK
in
Vasculitis UK
7 years ago
Newbie with Temporal Arteritis. New drug Tocilizumab (actrema)
Hi, I am new and have been reading a lot of good info an was so comforted when I read a post by another newbie who also has been in this battle alone. It has been 28 months and I just relapsed(Flared) I was down to 10mg now back to 35. I also relapsed Christmas Eve. My Rheumatologist wants me to go on
Hi, I am new and have been reading a lot of good info an was so comforted when I read a post by another newbie who also has been in this battle alone. It has been 28 months and I just relapsed(Flared) I was down to 10mg now back to 35. I also relapsed Christmas Eve. My Rheumatologist wants me to go on
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PMRGCAuk
7 years ago
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Giant cell arteritis
I just this minute signed up with healthunlocked. I am looking to talk with someone who has giant cell arteritis....particularly if you are experiencing fatigue.
I just this minute signed up with healthunlocked. I am looking to talk with someone who has giant cell arteritis....particularly if you are experiencing fatigue.
Buddyk
in
PMRGCAuk
7 years ago
arterial arteritis
Hi all, I have just joined . I was was diagnosed with pmr 17months ago and am on 7mg of predisolone every 2nd day and managing. However I have recently been experiencing headaches, problems reading and an excelleration of most of the symptoms and I am suspecting arterial arteritis. Appointment with gp
Hi all, I have just joined . I was was diagnosed with pmr 17months ago and am on 7mg of predisolone every 2nd day and managing. However I have recently been experiencing headaches, problems reading and an excelleration of most of the symptoms and I am suspecting arterial arteritis. Appointment with gp
blackstone1
in
PMRGCAuk
7 years ago
Cause of Hot Flashes?
Are hot flashes caused by PMR or prednisone withdrawal, or can they be caused by either one?
Are hot flashes caused by PMR or prednisone withdrawal, or can they be caused by either one?
Steve2002
in
PMRGCAuk
7 years ago
GIANT CELL TEMPORAL ARTERITIS AND THE LINK TO SEIZURES
It is 4 years plus since I was diagnosed with GCA [double vision etc,etc] and 2 years ago when down to 1mg of Prednisolone I had a relapse. I'm down to 2.5 mg of Pred now and continuing with a slow reduction. However, last year I had a seizure and had three more since. There is a research paper by P.L.Silbert
It is 4 years plus since I was diagnosed with GCA [double vision etc,etc] and 2 years ago when down to 1mg of Prednisolone I had a relapse. I'm down to 2.5 mg of Pred now and continuing with a slow reduction. However, last year I had a seizure and had three more since. There is a research paper by P.L.Silbert
Richard2012
in
PMRGCAuk
7 years ago
Tocilizumab
Does anyone have any experience of having been given this drug (by intravenous infusion once a month)? Used as steroid sparing agent. also ... does anyone have any blood tests results for Plasma IL-6. (Cost seems to be same as CRP but more sensitive to extent to which Prednisalone is working).
Does anyone have any experience of having been given this drug (by intravenous infusion once a month)? Used as steroid sparing agent. also ... does anyone have any blood tests results for Plasma IL-6. (Cost seems to be same as CRP but more sensitive to extent to which Prednisalone is working).
Tonylynn
in
PMRGCAuk
8 years ago
actemra
Basel, 24 January 2017 FDA grants priority review for Roche’s Actemra/RoActemra (tocilizumab) supplemental biologics license application for giant cell arteritis, a form of vasculitis Roche recently announced positive results from a Phase III clinical trial in giant cell arteritis (GCA) There have
Basel, 24 January 2017 FDA grants priority review for Roche’s Actemra/RoActemra (tocilizumab) supplemental biologics license application for giant cell arteritis, a form of vasculitis Roche recently announced positive results from a Phase III clinical trial in giant cell arteritis (GCA) There have
mamacline
in
PMRGCAuk
8 years ago
My recent experience of Giant Cell Arteritis
Hello, for the information of others, I am posting my recent experience of GCA as follows:- I have been suffering from pains in my neck, shoulders and cheeks. My head got so sensitive I could not even comb my hair and my jaws were so painful I could hardly eat any solids. After several visits to my
Hello, for the information of others, I am posting my recent experience of GCA as follows:- I have been suffering from pains in my neck, shoulders and cheeks. My head got so sensitive I could not even comb my hair and my jaws were so painful I could hardly eat any solids. After several visits to my
marpil
in
PMRGCAuk
8 years ago
Cause of GCA chicken pox and shingles virus??
Picked up the following today from a Facebook group for GCA based largely in USA thought this may be of interest to share:- A new study developed at the University of Colorado School of Medicine at the Anschutz Medical Campus links the virus that causes chicken pox and shingles to a condition that inflames
Picked up the following today from a Facebook group for GCA based largely in USA thought this may be of interest to share:- A new study developed at the University of Colorado School of Medicine at the Anschutz Medical Campus links the virus that causes chicken pox and shingles to a condition that inflames
DevonMichael
in
PMRGCAuk
8 years ago
Advice needed
I have been on Laxidu powders 1 or 2 nightly following.a bowel cancer scare some years ago which luckily turned out to be diverticular disease (not diverticulitis itself). I now hear that they can cause problems such as hoarseness etc. Does anyone have any info regarding this.
I have been on Laxidu powders 1 or 2 nightly following.a bowel cancer scare some years ago which luckily turned out to be diverticular disease (not diverticulitis itself). I now hear that they can cause problems such as hoarseness etc. Does anyone have any info regarding this.
Gillymar
in
PMRGCAuk
8 years ago
Tocilizumab and Giant Cell Arteritis
John Mills on behalf of VUK is Interested in hearing about the experiences of anyone who has been treated with Tocilizumab for treating GCA. (Good or Bad) NICE are doing an appraisal of this drug and VUK have been invited to take part in the consultation. Please contact John.mills@vasculitis.org.uk
John Mills on behalf of VUK is Interested in hearing about the experiences of anyone who has been treated with Tocilizumab for treating GCA. (Good or Bad) NICE are doing an appraisal of this drug and VUK have been invited to take part in the consultation. Please contact John.mills@vasculitis.org.uk
Suzym2u
in
PMRGCAuk
8 years ago
Tocilizumab for Giant Cell Arteritis (Temporal Arteritis)
John Mills on behalf of VUK are interested in hearing about the experiences of anyone who has been treated with Tocilizumab for treating GCA. (Good or Bad) NICE are doing an appraisal of this drug and VUK have been invited to take part in the consultation. Please contact John.mills@vasculitis.org.uk
John Mills on behalf of VUK are interested in hearing about the experiences of anyone who has been treated with Tocilizumab for treating GCA. (Good or Bad) NICE are doing an appraisal of this drug and VUK have been invited to take part in the consultation. Please contact John.mills@vasculitis.org.uk
Suzym2u
Vasculitis UK
in
Vasculitis UK
8 years ago
What to buy OH for Christmas
As Christmas is looming again I thought I'd tell you how to bring back that childhood feeling of the excitement at being faced with a pile of presents not knowing what you were about to unwrap. I don't know about anyone else but now that gifts are often requests rather than surprises Christmas has kind
As Christmas is looming again I thought I'd tell you how to bring back that childhood feeling of the excitement at being faced with a pile of presents not knowing what you were about to unwrap. I don't know about anyone else but now that gifts are often requests rather than surprises Christmas has kind
ShellyC23
in
PMRGCAuk
8 years ago
14 year old with possible Endo - chronic, consistent pain
My daughter is 14, This all started back in May she was hospitalized for 4 days with UTI, Kidney infection & possible
enteritis
after going through lower back pain before her period - severe pain - extreme pain on her right side - nothing showed up on x-rays, ultrasound, ct scan.
My daughter is 14, This all started back in May she was hospitalized for 4 days with UTI, Kidney infection & possible
enteritis
after going through lower back pain before her period - severe pain - extreme pain on her right side - nothing showed up on x-rays, ultrasound, ct scan.
mkesselpdx
in
Endometriosis UK
8 years ago
Professor Dasgupta on video
Hello everyone! At the PMRGCAuk AGM held in June, Professor Bhaskar Dasgupta, whose name many of you will be familiar with (he is President of our charity and a leading expert on PMR and GCA), spoke about why 2016 is a landmark year for Polymyalgia Rheumatica and Giant Cell Arteritis. Here is a link
Hello everyone! At the PMRGCAuk AGM held in June, Professor Bhaskar Dasgupta, whose name many of you will be familiar with (he is President of our charity and a leading expert on PMR and GCA), spoke about why 2016 is a landmark year for Polymyalgia Rheumatica and Giant Cell Arteritis. Here is a link
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
8 years ago
Giant Cell Arteritis and Mycophenolate
I am a 64 year old male who has suffered from GCA for 6 years. I did manage to get down to 3.5mgs of prednisilone a day although would have relapses. My new consultant was keen for me to have a scan to see how the inflammation was behaving however that then really set me back. I had to come off my drugs
I am a 64 year old male who has suffered from GCA for 6 years. I did manage to get down to 3.5mgs of prednisilone a day although would have relapses. My new consultant was keen for me to have a scan to see how the inflammation was behaving however that then really set me back. I had to come off my drugs
Stkeyna
in
PMRGCAuk
8 years ago
tocilizumab for gpa?
hi all, my wife was diagnosed with gpa almost five years ago which seems to be rumbling on and has been refused funding for rituximab but has been told she can have tocilizumab. have any of you had treatment with this drug for small and medium vessel vasculitis and with what results as most of the
hi all, my wife was diagnosed with gpa almost five years ago which seems to be rumbling on and has been refused funding for rituximab but has been told she can have tocilizumab. have any of you had treatment with this drug for small and medium vessel vasculitis and with what results as most of the
roobub
in
Vasculitis UK
8 years ago
Plymouth Devon & Cornwall PMR/GCA meet up 15th June 10.30
Re: - Polymyalgia Rheumatica – Giant Cell Arteritis – Temporal Arteritis support meeting for the Devon & Cornwall Area PMRGCA UK is holding their next support group meeting in the Plymouth area for anyone with PMR or their carers To be held in room 3 Saltash Wesley Methodist Church Callington
Re: - Polymyalgia Rheumatica – Giant Cell Arteritis – Temporal Arteritis support meeting for the Devon & Cornwall Area PMRGCA UK is holding their next support group meeting in the Plymouth area for anyone with PMR or their carers To be held in room 3 Saltash Wesley Methodist Church Callington
Hidden
in
PMRGCAuk
8 years ago
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