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Benefits of knowing your illness/condition/disease to help others as well as yourself
It’s about time I posted that a couple of months ago my husband was diagnosed with Giant Cell Arteritis. I was somewhat overwhelmed by the diagnosis having had PMR, GCA/LVV myself over the past 5 and a half years and haven’t, until now, felt ready to share his story on the forum.
It’s about time I posted that a couple of months ago my husband was diagnosed with Giant Cell Arteritis. I was somewhat overwhelmed by the diagnosis having had PMR, GCA/LVV myself over the past 5 and a half years and haven’t, until now, felt ready to share his story on the forum.
123-go
in
PMRGCAuk
8 months ago
Tooth extraction and tocilizumab
Hi I am going to have to have a tooth extraction....dentist says chance of jaw necrosis from tocilizumab and I wonder if anyone has had this ....I know from here that it is only a small chance but its scary ! Also will I need to come off medications (tocilizumab and methotrexate) first? Advice appreciated
Hi I am going to have to have a tooth extraction....dentist says chance of jaw necrosis from tocilizumab and I wonder if anyone has had this ....I know from here that it is only a small chance but its scary ! Also will I need to come off medications (tocilizumab and methotrexate) first? Advice appreciated
WaltzG
in
PMRGCAuk
8 months ago
Autoimmune Registry
I didn't know there was an Autoimmune Registry. However polymyalgia rheumatica is not found through their opening page search although it is on the list as a vascular disease, as is giant cell arteritis. Maybe their search function is as useful as HU's (used to be)? :D Or maybe they just haven't got
I didn't know there was an Autoimmune Registry. However polymyalgia rheumatica is not found through their opening page search although it is on the list as a vascular disease, as is giant cell arteritis. Maybe their search function is as useful as HU's (used to be)? :D Or maybe they just haven't got
HeronNS
in
PMRGCAuk
9 months ago
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Follow up on RILP
So to recap, the neurologist diagnosed me with RILP which has fried my quad and the surgeon says I have radiation
enteritis
which resulted in the perforated bowel.
So to recap, the neurologist diagnosed me with RILP which has fried my quad and the surgeon says I have radiation
enteritis
which resulted in the perforated bowel.
Kentucky1
in
Advanced Prostate Cancer
1 year ago
How to pass the day
Eternities Day
Dawn whispers to your sleepy ears as nature awakens to herald daybreak. Quiet colours will bless your eyes, as suns soft rays do gently entice those leaden lids to rise and see the glory of my being. Stay with me awhile and see that glowing orb in haloed radiance
Eternities Day
Dawn whispers to your sleepy ears as nature awakens to herald daybreak. Quiet colours will bless your eyes, as suns soft rays do gently entice those leaden lids to rise and see the glory of my being. Stay with me awhile and see that glowing orb in haloed radiance
cycli
in
PMRGCAuk
11 months ago
Radiation enteritis tests?
Hi, I have RILP (Lumbar Plexopathy) and this has been my main problem for years but now the bowel problems are taking over - frequent flare ups of pain and diarrhoea lasting days. My insides feel inflamed and I feel very unwell. I have had a colonoscopy but was wondering if the damage is in the small
Hi, I have RILP (Lumbar Plexopathy) and this has been my main problem for years but now the bowel problems are taking over - frequent flare ups of pain and diarrhoea lasting days. My insides feel inflamed and I feel very unwell. I have had a colonoscopy but was wondering if the damage is in the small
Echium
in
Pelvic Radiation Disease Association
1 year ago
Newswire Spring 2023 - my thoughts
I just finally got round to reading this and am left feeling more inspired and positive on the whole. There is still a long way to go and so much to learn about the baffling diseases of PMR and GCA but when I think back to when I was first diagnosed and struggling between 2012 and 2015, there are definite
I just finally got round to reading this and am left feeling more inspired and positive on the whole. There is still a long way to go and so much to learn about the baffling diseases of PMR and GCA but when I think back to when I was first diagnosed and struggling between 2012 and 2015, there are definite
tangocharlie
in
PMRGCAuk
1 year ago
Hot flashes?
Am having ever more hot flashes and sweating around my neck over last several months. Could it be the steroids? In the distant past, was relying on welbutrin for depression but got hot flashes and changed to escatolepram. In the last few years I started taking a small dose of welbutrin in addition
Am having ever more hot flashes and sweating around my neck over last several months. Could it be the steroids? In the distant past, was relying on welbutrin for depression but got hot flashes and changed to escatolepram. In the last few years I started taking a small dose of welbutrin in addition
Merryfield
in
PMRGCAuk
1 year ago
Can you 'demand' Tocilizumab for GCA?
I was diagnosed with PMR in January 23, responded well to steroids (15mg) but quickly developed GCA symptoms (severe headache pain, blurred vision and jaw claudication) when these were reduced to 12.5mg after 3 weeks and 'normal' CRP/ESR tests. I was referred to Ambulatory care but an ultrasound showed
I was diagnosed with PMR in January 23, responded well to steroids (15mg) but quickly developed GCA symptoms (severe headache pain, blurred vision and jaw claudication) when these were reduced to 12.5mg after 3 weeks and 'normal' CRP/ESR tests. I was referred to Ambulatory care but an ultrasound showed
tweety_pie
in
PMRGCAuk
1 year ago
Tocilizumab
Hi. Has anyone had Tocilizumab injections for pmr? I've been looking at recent research which seems to suggest favourable outcomes for pmr sufferers who have problems tapering prednisolone.
Hi. Has anyone had Tocilizumab injections for pmr? I've been looking at recent research which seems to suggest favourable outcomes for pmr sufferers who have problems tapering prednisolone.
BlueMozart
in
PMRGCAuk
1 year ago
Gastric Enteritis Nightmare
About 4 weeks ago on a holiday in Greece I became really sick with what was diagnosed as Gastric
Enteritis
. Vomiting, terrible stomach pain , diarrhoea, the works. I felt so weak I could hardly walk. It was a weeks holiday and I was ill for the last 5 days of it.
About 4 weeks ago on a holiday in Greece I became really sick with what was diagnosed as Gastric
Enteritis
. Vomiting, terrible stomach pain , diarrhoea, the works. I felt so weak I could hardly walk. It was a weeks holiday and I was ill for the last 5 days of it.
Marty3
in
IBS Network
2 years ago
Update on my previous post trapped nerve and PMR.
After an MRI on my spine I do not have a trapped nerve in my back and my pain is two vertebrae bones crumbling. I have come to the conclusion that the pain in my back and bottom area is mainly my PMR flare, it is so bad I can't move without pain while in bed. Tried increasing my pred dosage from 6mg
After an MRI on my spine I do not have a trapped nerve in my back and my pain is two vertebrae bones crumbling. I have come to the conclusion that the pain in my back and bottom area is mainly my PMR flare, it is so bad I can't move without pain while in bed. Tried increasing my pred dosage from 6mg
Washingup
in
PMRGCAuk
1 year ago
Severe pain
I have been living with pelvic radiation disease, specifically radiation
enteritis
and radiation cystitis for many, many years. However, the flare ups I have are becoming more frequent (3 already in January) and increasingly difficult to get over.
I have been living with pelvic radiation disease, specifically radiation
enteritis
and radiation cystitis for many, many years. However, the flare ups I have are becoming more frequent (3 already in January) and increasingly difficult to get over.
BlueButterfly4
in
Pelvic Radiation Disease Association
1 year ago
Interesting Morning
Be careful out there if you get
enteritis
!!
Be careful out there if you get
enteritis
!!
President2012
in
AF Association
1 year ago
adverse reaction to contrast fluid in CT scan or coincidental gastro enteritis
Doctors are unsure of cause but said potentially gastro
enteritis
( but everyone else in family was fine on same food). They think the vomiting caused the bleed by creating a laceration in the oesophagus.
Doctors are unsure of cause but said potentially gastro
enteritis
( but everyone else in family was fine on same food). They think the vomiting caused the bleed by creating a laceration in the oesophagus.
Lyndylan
in
AF Association
1 year ago
Fantastic Book for PMR and GCA
On one of my earlier posts, a poster referred me to a book about PMR and GCA. My husband, 73 has been diagnosed with PMR. She recommended this book and it has been fantastic and eye opening and in many ways a Godsend, particularly for asking questions of the rheumatologist and his proactive GP who
On one of my earlier posts, a poster referred me to a book about PMR and GCA. My husband, 73 has been diagnosed with PMR. She recommended this book and it has been fantastic and eye opening and in many ways a Godsend, particularly for asking questions of the rheumatologist and his proactive GP who
Andymegv
in
PMRGCAuk
1 year ago
Steroid sparing agents
Could anyone tell me more about Steroid sparing agents please? I have read about Methotrexate and Tocilizumab (?) but not really sure when or if I would go on them ( I was only diagnosed with GCA at the end of January) - also, side effects etc? I see my Rheumatologist next Monday and want to armed with
Could anyone tell me more about Steroid sparing agents please? I have read about Methotrexate and Tocilizumab (?) but not really sure when or if I would go on them ( I was only diagnosed with GCA at the end of January) - also, side effects etc? I see my Rheumatologist next Monday and want to armed with
Janeval
in
PMRGCAuk
1 year ago
Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica - a very useful reference to show your doctor
https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429 This is Open Access so everyone can read it. It is something I think we should all have a read of, some will be beyond most of us and some is just plain boring but there are points in it everyone will understand and can bring to the notice
https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429 This is Open Access so everyone can read it. It is something I think we should all have a read of, some will be beyond most of us and some is just plain boring but there are points in it everyone will understand and can bring to the notice
PMRpro
Ambassador
in
PMRGCAuk
1 year ago
Do natural supplements work to reduce high cholesterol?
While strictly not a PMR issue I know there are a few whose cholesterol has risen markedly since being diagnosed. I am one of them. I have always had high-ish cholesterol but my last fasting blood test showed everything else perfectly normal but my cholesterol was up. I haven't seen the results
While strictly not a PMR issue I know there are a few whose cholesterol has risen markedly since being diagnosed. I am one of them. I have always had high-ish cholesterol but my last fasting blood test showed everything else perfectly normal but my cholesterol was up. I haven't seen the results
Pr0jection
in
PMRGCAuk
1 year ago
A giant cell arteritis suffer
A giant cell arteritis suffer on methotrexate and prednisolone. Has anyone been on this combination as well? How long did it take you to get off the steroids as i'm still on 4mg as struggling to get off them as symptoms keep returning once I reduce down any further.
A giant cell arteritis suffer on methotrexate and prednisolone. Has anyone been on this combination as well? How long did it take you to get off the steroids as i'm still on 4mg as struggling to get off them as symptoms keep returning once I reduce down any further.
BM16
in
PMRGCAuk
1 year ago
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