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Giant Cell Arteritis
Hi, can someone help with describing what the double vision element is with GCA? Most of the time my eye sight feels ok... except at certain distances say watching a game of football I see two copies of the player.. if I close one eye it’s ok! Also when driving I don’t necessarily see two cars as I wouldn
Hi, can someone help with describing what the double vision element is with GCA? Most of the time my eye sight feels ok... except at certain distances say watching a game of football I see two copies of the player.. if I close one eye it’s ok! Also when driving I don’t necessarily see two cars as I wouldn
Hidden
in
PMRGCAuk
4 years ago
Advice?
Newly diagnosed with PMR. Had a tapering dose of Prednisone (50mg x3 days, 40mg x 1 week, 30mg x 1 week and now on 20mg until I go back to Rheumatologist for follow up on May 27th). She proposed 3 medications to use for the future: Tocilizumab, Methotrexate or Hydrochloraquoin (sp?). I am interested
Newly diagnosed with PMR. Had a tapering dose of Prednisone (50mg x3 days, 40mg x 1 week, 30mg x 1 week and now on 20mg until I go back to Rheumatologist for follow up on May 27th). She proposed 3 medications to use for the future: Tocilizumab, Methotrexate or Hydrochloraquoin (sp?). I am interested
DianneRose409
in
PMRGCAuk
4 years ago
Blurred vision - alternatives to Tocilizumab
One of our PMRGCAuk members has sent the following question: "My mother has GCA which unfortunately resulted in 50% sight loss across both eyes. She has been on Tocilizumab for about 8 months now, and her steroids have been gradually reduced to now nil. Initially, she was happy to be off the steroids
One of our PMRGCAuk members has sent the following question: "My mother has GCA which unfortunately resulted in 50% sight loss across both eyes. She has been on Tocilizumab for about 8 months now, and her steroids have been gradually reduced to now nil. Initially, she was happy to be off the steroids
Skinnyjonny
in
PMRGCAuk
5 years ago
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I have to withhold my tocilizumab
I was taken into hospital again with cellulitis on my leg put on intravenous antibiotics and am now at home on antibiotic tablets. This means that I have to withhold my tocilizumab. My concern is that if I have a flare what should I do. Increase my pred and by how much? I am now on 8mgms. Tried to reduce
I was taken into hospital again with cellulitis on my leg put on intravenous antibiotics and am now at home on antibiotic tablets. This means that I have to withhold my tocilizumab. My concern is that if I have a flare what should I do. Increase my pred and by how much? I am now on 8mgms. Tried to reduce
Teekay2
in
PMRGCAuk
5 years ago
Slightly raised tummy right of belly button and pain
Then the
enteritis
stopped and got what I thought is constipation as very hard to pass and pebble like. During all this time there was a constant (and still is) pain just right side of belly button and it seems to me that it is swollen and hard at times.
Then the
enteritis
stopped and got what I thought is constipation as very hard to pass and pebble like. During all this time there was a constant (and still is) pain just right side of belly button and it seems to me that it is swollen and hard at times.
Mrsjulesflo
in
Crohn's and Colitis Support
5 years ago
Urea and Electrolytes
Serum Sodium range 133 - 146 Can I have some help please? In the last 5months my reading has been <133. What can I do to try to get it within the range?
Serum Sodium range 133 - 146 Can I have some help please? In the last 5months my reading has been <133. What can I do to try to get it within the range?
prunus
in
PMRGCAuk
5 years ago
Any Experience with Tocilizumab and GCA?
I am reading that it may reduce the likelihood of relapse and can reduce the long term dosage of Prednisone. Has anyone had experience with it, good or bad?
I am reading that it may reduce the likelihood of relapse and can reduce the long term dosage of Prednisone. Has anyone had experience with it, good or bad?
Brofort
in
PMRGCAuk
5 years ago
Tumor markers
I had a gastro
enteritis
, UTI and cellulitis. Does this seem normal? My dose was dropped from 125 to 75. But still I’m having side effects. Any replies will help. Thanks everyone!!
I had a gastro
enteritis
, UTI and cellulitis. Does this seem normal? My dose was dropped from 125 to 75. But still I’m having side effects. Any replies will help. Thanks everyone!!
Puppy_love
in
SHARE Metastatic Breast Cancer
5 years ago
Temporal Ultrasound May Be Useful in Giant Cell Arteritis Disease Monitoring (in patients paring corticosteroids with tocilizumab)
Thought this was an interesting article... wouldn't it be great if ultrasounds became the standard and most reliable source for monitoring and tracking GCA, in all patients, not just those paring their corticosteroids with tocilizumab. The more tracking/monitoring, the more data... the more data,
Thought this was an interesting article... wouldn't it be great if ultrasounds became the standard and most reliable source for monitoring and tracking GCA, in all patients, not just those paring their corticosteroids with tocilizumab. The more tracking/monitoring, the more data... the more data,
Hidden
in
PMRGCAuk
5 years ago
Headache and GCA
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4173245/ The article is entitled
Giant cell arteritis or tension-type headache?: A differential diagnostic dilemma
and details the presentation of an elderly lady who appeared to have a tension headache - but it was in fact GCA. It is probably a reference
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4173245/ The article is entitled
Giant cell arteritis or tension-type headache?: A differential diagnostic dilemma
and details the presentation of an elderly lady who appeared to have a tension headache - but it was in fact GCA. It is probably a reference
LilyBark
in
PMRGCAuk
5 years ago
California wildfires and stress/- update
I live in Northern California and have been enduring power blackouts for weeks. Today we have the 4th blackout in 3 weeks and are being told the blackouts could go on go another month as there is no rain in the forecast. Thank goodness no fires have started near me and I haven’t had to evacuate!
I live in Northern California and have been enduring power blackouts for weeks. Today we have the 4th blackout in 3 weeks and are being told the blackouts could go on go another month as there is no rain in the forecast. Thank goodness no fires have started near me and I haven’t had to evacuate!
Mstiles
in
PMRGCAuk
5 years ago
Update on previous post but cannot find it 🙄
Update MRI shows no new stroke so going with a flare up of gca. Back up to 20 mg pred daily and feeling loads better. My consultant is going to start me on tocilizumab soon just waiting for appointment. Weird symptoms for a flare and she's still suspicious of tia but hey as she keeps telling me I'm
Update MRI shows no new stroke so going with a flare up of gca. Back up to 20 mg pred daily and feeling loads better. My consultant is going to start me on tocilizumab soon just waiting for appointment. Weird symptoms for a flare and she's still suspicious of tia but hey as she keeps telling me I'm
Pamela60
in
PMRGCAuk
5 years ago
Clinical trial to test potential new therapy for giant cell arteritis
Well... at least they're looking for options! https://medicalxpress.com/news/2019-09-clinical-trial-potential-therapy-giant.html
Well... at least they're looking for options! https://medicalxpress.com/news/2019-09-clinical-trial-potential-therapy-giant.html
Hidden
in
PMRGCAuk
5 years ago
Mother has Giant Cell Arteritis - what does the future hold?
Having just been through a week of hospital after my mother has lost most her sight in one eye and is being treated for Giant Cell Arteritis - can anyone who has been through this tell me how the years play out after diagnosis? At the moment she’s terrified. Thank you zxxx
Having just been through a week of hospital after my mother has lost most her sight in one eye and is being treated for Giant Cell Arteritis - can anyone who has been through this tell me how the years play out after diagnosis? At the moment she’s terrified. Thank you zxxx
TheSmartestGiant70
in
PMRGCAuk
5 years ago
Please watch Video (Giant Cell and PMR and Tocilizumab)
Forgive me if this has already been discussed on here but this is a video put out about a month ago called "Giant Cell Arteritis: Breaking Down Barriers to Optimal Management". In this webcast, Dr. John Stone discusses best practices for integrating the latest clinical evidence surrounding new and emerging
Forgive me if this has already been discussed on here but this is a video put out about a month ago called "Giant Cell Arteritis: Breaking Down Barriers to Optimal Management". In this webcast, Dr. John Stone discusses best practices for integrating the latest clinical evidence surrounding new and emerging
lemarie1
in
PMRGCAuk
5 years ago
Colonoscopy Whilst on Steroids
Hello Again! I am wondering if you could let me have your opinions before I speak to the endoscopy unit. I am having a colonoscopy later this month. I know how to live! 😊 My question is, on the day prior to the procedure, I am allowed a light breakfast - which is when I would normally take my 3mg
Hello Again! I am wondering if you could let me have your opinions before I speak to the endoscopy unit. I am having a colonoscopy later this month. I know how to live! 😊 My question is, on the day prior to the procedure, I am allowed a light breakfast - which is when I would normally take my 3mg
Songbird69
in
PMRGCAuk
5 years ago
2nd Anniversary in other words - my 54th run
Gastro
Enteritis
& blisters (running minus socks - doh!) delayed me by two weeks. Nevertheless, i eventually ran for the 54th time this morning and clocked up a total of 265k in 36h 35m 16s since step one of C25k at the age of 63 (nerdy stuff eh? ) .
Gastro
Enteritis
& blisters (running minus socks - doh!) delayed me by two weeks. Nevertheless, i eventually ran for the 54th time this morning and clocked up a total of 265k in 36h 35m 16s since step one of C25k at the age of 63 (nerdy stuff eh? ) .
GibsonBBKing
Graduate
in
Couch to 5K
5 years ago
Reducing tocilizumab injections
I was told to try to take my tocilizumab injections every 4 weeks but struggled so much I have taken this last one after 3 weeks, before that 3 1/2 weeks twice. Does anyone have any experience of reducing the injections. I am feeling increasingly ill, sweating, extreme tiredness - signs the GCA is back
I was told to try to take my tocilizumab injections every 4 weeks but struggled so much I have taken this last one after 3 weeks, before that 3 1/2 weeks twice. Does anyone have any experience of reducing the injections. I am feeling increasingly ill, sweating, extreme tiredness - signs the GCA is back
christine2715
in
PMRGCAuk
5 years ago
Elevated D-dimer,negative scans
Ended up at the ER where they did a cat scan of the stomach and diagnosed me with a case of
enteritis
......fast forward to this week, I had a scheduled appointment with my heart doctor for palpitations and a check of my mitral valve prolapse.
Ended up at the ER where they did a cat scan of the stomach and diagnosed me with a case of
enteritis
......fast forward to this week, I had a scheduled appointment with my heart doctor for palpitations and a check of my mitral valve prolapse.
Appraiser
in
Advanced Prostate Cancer
5 years ago
So done with this
Hi everyone.. I was diagnose with Giant Cell Arteritis in Sep 2018 so I haven't had it for long it feels longer I hate the headaches,tiredness,body akes,and the weight gain from the prednisone ugh! 😢😢
Hi everyone.. I was diagnose with Giant Cell Arteritis in Sep 2018 so I haven't had it for long it feels longer I hate the headaches,tiredness,body akes,and the weight gain from the prednisone ugh! 😢😢
vicky561
in
PMRGCAuk
6 years ago
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