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GCA and black outs?
Hi I'm new to this forum. Dx with pmr April this year. CRP 106. 20mg prednisolone. Worked well so slowly down to 7mg by beginning of November when all symptoms came back within days. then fell over but thought nothing of it. Following week started to feel really unwell. Husband found me unconscious
Hi I'm new to this forum. Dx with pmr April this year. CRP 106. 20mg prednisolone. Worked well so slowly down to 7mg by beginning of November when all symptoms came back within days. then fell over but thought nothing of it. Following week started to feel really unwell. Husband found me unconscious
Devonspinner
in
PMRGCAuk
6 years ago
Could this be PMR or Steroid side effect ?
I have been on Pred for 4 years and am reducing from 7 to 6.75 mg again. I had a very strenuous and stressful day on Saturday, going to a funeral and driving home took nearly 2 hours. The longest journey I have done for 3 years is about 15/20 minutes. When I got home I was so tired I needed a rest
I have been on Pred for 4 years and am reducing from 7 to 6.75 mg again. I had a very strenuous and stressful day on Saturday, going to a funeral and driving home took nearly 2 hours. The longest journey I have done for 3 years is about 15/20 minutes. When I got home I was so tired I needed a rest
NursePeggy
in
PMRGCAuk
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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"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
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
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
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
Muscle heaviness .
Hello I can feel the PMR is active in my body ,it is a wierd feeling which I expect you all can relate too.I also have intermittent one -sided shoulder pain.The question which I would like to ask however ,concerns the muscles in my upper arms and thighs (including lower buttocks!)They feel heavy and
Hello I can feel the PMR is active in my body ,it is a wierd feeling which I expect you all can relate too.I also have intermittent one -sided shoulder pain.The question which I would like to ask however ,concerns the muscles in my upper arms and thighs (including lower buttocks!)They feel heavy and
Dewdrop456
in
PMRGCAuk
6 years ago
Radiation effects are they normal
Now I’ve researched and found it’s common to have radiation
enteritis
which most get when having pelvic bed radiated. Seeing oncologist tomorrow because he also has 5 weeks left of radiTion. My question is anyone experience such uncomfortable throbbing to the abdomen also?
Now I’ve researched and found it’s common to have radiation
enteritis
which most get when having pelvic bed radiated. Seeing oncologist tomorrow because he also has 5 weeks left of radiTion. My question is anyone experience such uncomfortable throbbing to the abdomen also?
Armywifedublin
in
Advanced Prostate Cancer
6 years ago
Pred tapering starts tomorrow
I was diagnosed with GCA/PMR May 7th and started on 60mg of prednisone. I will be lowering that dose to 50mg tomorrow. The doctor wants me to consider Tocilizumab weekly infusions. I have read the study and understand the side effects, but I would like to hear some of your thoughts and/or experiences
I was diagnosed with GCA/PMR May 7th and started on 60mg of prednisone. I will be lowering that dose to 50mg tomorrow. The doctor wants me to consider Tocilizumab weekly infusions. I have read the study and understand the side effects, but I would like to hear some of your thoughts and/or experiences
kay7954
in
PMRGCAuk
6 years ago
Eejit!!!!
Well, I guess there's a first time for everything... but feel I like a right idiot!!! It was 1:30 this afternoon, before I realised, I had forgotten to take my Prednisolone! I wondered why I felt weird and sluggish, just off... it was like I was going in slow motion and couldn't get going. Not
Well, I guess there's a first time for everything... but feel I like a right idiot!!! It was 1:30 this afternoon, before I realised, I had forgotten to take my Prednisolone! I wondered why I felt weird and sluggish, just off... it was like I was going in slow motion and couldn't get going. Not
Hidden
in
PMRGCAuk
6 years ago
Lumber puncture
So today a neurologist came in at 11:00. Did a lumber puncture right in the room. Now it’s a waiting game. Which I hate. Gave me gababapentin. For headache. I only had 2 doses and I can’t tell if it’s working. Or how long it takes to kick in. I’m hoping to go home tomorrow. But my right leg is bothering
So today a neurologist came in at 11:00. Did a lumber puncture right in the room. Now it’s a waiting game. Which I hate. Gave me gababapentin. For headache. I only had 2 doses and I can’t tell if it’s working. Or how long it takes to kick in. I’m hoping to go home tomorrow. But my right leg is bothering
Hali12
in
PMRGCAuk
6 years ago
Who the Hell is Ali ibn Isa?
He may be the guy who documented the very first written account of a TAB (Temporal Artery Biopsy) procedure; sometime between 940 to 1010 A.D!!! Go Ali! Another very technical (and to me, the layperson) mind boggling editorial about recent advances in giant cell arteritis and impacts to how the disease
He may be the guy who documented the very first written account of a TAB (Temporal Artery Biopsy) procedure; sometime between 940 to 1010 A.D!!! Go Ali! Another very technical (and to me, the layperson) mind boggling editorial about recent advances in giant cell arteritis and impacts to how the disease
Hidden
in
PMRGCAuk
6 years ago
Any bowel problems with GPA?
Hi, for several months now I've had a change in bowel habit. Colonoscopy clear thank goodness. But the problem continues and have had a couple of episodes of near incontince of faeces. And deep rectal pain. Just wondered if any one else has had similar symptoms.
Hi, for several months now I've had a change in bowel habit. Colonoscopy clear thank goodness. But the problem continues and have had a couple of episodes of near incontince of faeces. And deep rectal pain. Just wondered if any one else has had similar symptoms.
ludo
in
Vasculitis UK
6 years ago
The Lighter Side: THUNDERBIRDS are ‘GO’! At Last, the ‘Write Me Funny…’ book website goes ‘Live’ ;-)
Greetings Polymylingers and Pred Playmates everywhere. I hope you're well (or as well as can be), and bearing-up after the Icy Winter weather. :-) I know. Just when you thought (or perhaps hoped?) I’d gone away permanently, I’m BACK - and delighted to announce that the long awaited website giving
Greetings Polymylingers and Pred Playmates everywhere. I hope you're well (or as well as can be), and bearing-up after the Icy Winter weather. :-) I know. Just when you thought (or perhaps hoped?) I’d gone away permanently, I’m BACK - and delighted to announce that the long awaited website giving
markbenjamin57
in
PMRGCAuk
6 years ago
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
6 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
6 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
6 years ago
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
6 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
6 years ago
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