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Professor Graham Hughes Blog: April 2018
April 2018
01 April 2018
by Professor Graham R V Hughes MD FRCP
April, at least here in the South East of England, has continued the long, dark, wet winter. Even Scotland is doing better than us! The good news is that our website (www.ghic.world) is now fully up and running.
April 2018
01 April 2018
by Professor Graham R V Hughes MD FRCP
April, at least here in the South East of England, has continued the long, dark, wet winter. Even Scotland is doing better than us! The good news is that our website (www.ghic.world) is now fully up and running.
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
6 years ago
Awaiting Diagnosis
Hi, I am a newbie here. I am currently having numerous tests for autoimmune disease. My consultant wrote to me saying possible connective tissue disease alongside possible PBC. My AMA antibodies were positive at 100 and positive ANA at 3200. Im am undergoing muscle biopsies this week and nerve conduction
Hi, I am a newbie here. I am currently having numerous tests for autoimmune disease. My consultant wrote to me saying possible connective tissue disease alongside possible PBC. My AMA antibodies were positive at 100 and positive ANA at 3200. Im am undergoing muscle biopsies this week and nerve conduction
Tallulah73
in
PBC Foundation
6 years ago
Young PBC New Diagnosis
Hi everyone, So I recently have been diagnosed with PBC, but I am only 19 years old. I don't really know much about PBC so please let me know if you have any advice. Edit: I thought it would be important to let you guys know what my labs were. I have a positive AMA M2 and GTT test. My AST and ALT are
Hi everyone, So I recently have been diagnosed with PBC, but I am only 19 years old. I don't really know much about PBC so please let me know if you have any advice. Edit: I thought it would be important to let you guys know what my labs were. I have a positive AMA M2 and GTT test. My AST and ALT are
selinihun
in
PBC Foundation
6 years ago
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First Actemra infusion today
A bit nervous, today I will be having my first Actemra infusion. In January I started on 60 mg of prednisone, am down to 30 mg currently. My Rheumatologist wants me to start the Actemra so I can titrate off of the prednisone faster due to my experiencing so many negative side effects from prednisone
A bit nervous, today I will be having my first Actemra infusion. In January I started on 60 mg of prednisone, am down to 30 mg currently. My Rheumatologist wants me to start the Actemra so I can titrate off of the prednisone faster due to my experiencing so many negative side effects from prednisone
CRW-68
in
PMRGCAuk
6 years ago
Negative ANA?
I've not been diagnosed with Lupus, but I do have many of its symptoms. I've had a few blood tests and the ANA keeps coming back as negative. Has anyone had several negative ANA results and after several years get a positive? They seem to use this as the main diagnostic to confirm if you have Lupus
I've not been diagnosed with Lupus, but I do have many of its symptoms. I've had a few blood tests and the ANA keeps coming back as negative. Has anyone had several negative ANA results and after several years get a positive? They seem to use this as the main diagnostic to confirm if you have Lupus
chriscarter
in
LUPUS UK
6 years ago
Long wait is finally over
Today’s the day I’ve been waiting for months. My rheumatologist appointment after receiving the letter stating my Ana test came back strongly positive with an ANA of 1:640 with a homogeneous pattern. Firstly I know I’ll be asking what the hell that means?!?? Cause I haven’t a clue. But what am I supposed
Today’s the day I’ve been waiting for months. My rheumatologist appointment after receiving the letter stating my Ana test came back strongly positive with an ANA of 1:640 with a homogeneous pattern. Firstly I know I’ll be asking what the hell that means?!?? Cause I haven’t a clue. But what am I supposed
lisa___s
in
LUPUS UK
6 years ago
Positive ANA with Fibro diagnosis?
Have many symptoms of Lupus saw new Rheumatologist my last one retired i have most of the symptoms listed for Lupus which seem to be the same as Lupus i got my test results back and all negative except tge ANA is positive with speckled pattern and highest titer it can go up to. Anyone else have this
Have many symptoms of Lupus saw new Rheumatologist my last one retired i have most of the symptoms listed for Lupus which seem to be the same as Lupus i got my test results back and all negative except tge ANA is positive with speckled pattern and highest titer it can go up to. Anyone else have this
Michiganpbc
in
Fibromyalgia Action UK
6 years ago
Someone please help.
My wife had a positive ana of 1:100 last month. Then a kidney biopsy was performed due to hematuria. The biopsy results says iga nephropath non active non chronic. Her blood test for dsdna and other auto immune indicators are negatuve. She had a rash in her nose and her cheek this past week. Went to
My wife had a positive ana of 1:100 last month. Then a kidney biopsy was performed due to hematuria. The biopsy results says iga nephropath non active non chronic. Her blood test for dsdna and other auto immune indicators are negatuve. She had a rash in her nose and her cheek this past week. Went to
donnyray
in
LUPUS UK
6 years ago
New diagnosis; itching not improving
Hello, I started having severe nighttime itching in Oct 2016. Spent a year trying steroids, allergy meds and getting allergy tests which were negative. Liver biopsy last month confirmed PBC, stage 1 no fibrosis. My alk phos, ggt, lfts were mildly elevated. As is my cholesterol and iron level. My M2
Hello, I started having severe nighttime itching in Oct 2016. Spent a year trying steroids, allergy meds and getting allergy tests which were negative. Liver biopsy last month confirmed PBC, stage 1 no fibrosis. My alk phos, ggt, lfts were mildly elevated. As is my cholesterol and iron level. My M2
55mimi
in
PBC Foundation
6 years ago
Please help me understand
I am very confused and worried. My babyboy (10 years) may or may not at this point have lupus. We received lab results back with a positive Ana ifa... and a speckled Ana pattern 1.... as you can imagine none of this makes any sense to me at all. We have an appt in June for a emg/nerve conduction
I am very confused and worried. My babyboy (10 years) may or may not at this point have lupus. We received lab results back with a positive Ana ifa... and a speckled Ana pattern 1.... as you can imagine none of this makes any sense to me at all. We have an appt in June for a emg/nerve conduction
Dominobob
in
LUPUS UK
6 years ago
Positive ana 1.8 speckled neurologist ordered ana panel positive 19 high anti double stranded dna homogenous I don't understand is it lupus
Hello, my name is Kelly an I'm 40 years old. I'm exhausted all the time some days I can barely hold my head up. I hurt consistently. I have a red under the skin lacy like rash started My upper chest right under neck an has spread under skin up neck an across cheeks an nose gets worse in sun light.My
Hello, my name is Kelly an I'm 40 years old. I'm exhausted all the time some days I can barely hold my head up. I hurt consistently. I have a red under the skin lacy like rash started My upper chest right under neck an has spread under skin up neck an across cheeks an nose gets worse in sun light.My
KellyRenai
in
LUPUS UK
6 years ago
Newbie Advice
So I've been going backward and forward to my doctors quite some time and i've had thyroid tests that have been some what inconclusive but before I return this time I wondered if anyone has advice on the following results. This was a test done in april this year showing borderline and to retest. Pathology
So I've been going backward and forward to my doctors quite some time and i've had thyroid tests that have been some what inconclusive but before I return this time I wondered if anyone has advice on the following results. This was a test done in april this year showing borderline and to retest. Pathology
Sammie1986
in
Thyroid UK
6 years ago
Help with interpreting various blood results
Hi, I recently had a blood test for various things. (I have Psoriatic Arthritis, Fibromyalgia, Sjörgren's Syndrome, Hashimoto's Thyroiditis and some of the tests are because of the meds I take). I was hoping someone could interpret my results, i.e. if there's anything I should be concerned about. I'm
Hi, I recently had a blood test for various things. (I have Psoriatic Arthritis, Fibromyalgia, Sjörgren's Syndrome, Hashimoto's Thyroiditis and some of the tests are because of the meds I take). I was hoping someone could interpret my results, i.e. if there's anything I should be concerned about. I'm
Gnatsville
in
Thyroid UK
6 years ago
Worried for my 19 year old daughter!
I have SLE and was diagnosed in 2001 although I had been experiencing symptoms since 1991. My Aunty had rheumatoid arthritis and my father had raynauds syndrome. My daughter has IBS and I have suspected, Lupus for a while due to some mild symptoms. She had an ANA Test done which was negative and a blood
I have SLE and was diagnosed in 2001 although I had been experiencing symptoms since 1991. My Aunty had rheumatoid arthritis and my father had raynauds syndrome. My daughter has IBS and I have suspected, Lupus for a while due to some mild symptoms. She had an ANA Test done which was negative and a blood
Nokuse
in
LUPUS UK
6 years ago
Just beginning the confirmation and staging of my PBC diagnosis.
Hi All, I see from this site that I stumbled upon that I am not alone. My Alk Phos was rising each time I visited my Endo ( IDDM), so he referred me to G.I. in Manhattan. I was told that the IDDM was probably an autoimmune response. This PBC most likely the same. Lucky me! Another challenge. Tomorrow
Hi All, I see from this site that I stumbled upon that I am not alone. My Alk Phos was rising each time I visited my Endo ( IDDM), so he referred me to G.I. in Manhattan. I was told that the IDDM was probably an autoimmune response. This PBC most likely the same. Lucky me! Another challenge. Tomorrow
FranSP
in
PBC Foundation
6 years ago
Positive ENA screening test - Help I don't understand
I have just come back from an appointment with my GP who wanted to speak to me regarding my recent blood test. Unfortunately, I saw a different GP from usual who did not understand the results anymore than I did! She is going to write to the rheumatologist. So I have a positive ANA 1:320 (I have had
I have just come back from an appointment with my GP who wanted to speak to me regarding my recent blood test. Unfortunately, I saw a different GP from usual who did not understand the results anymore than I did! She is going to write to the rheumatologist. So I have a positive ANA 1:320 (I have had
HedgeEnd
in
LUPUS UK
6 years ago
hello
hey. i was diagnosed with depression & social anxiety in december of 2017. at the time i was prescribed zoloft to help me with these things , but my mom made me discontinue my use because she was afraid it would make my suicidal thoughts worse. i have attempted once & and am working through therapy to
hey. i was diagnosed with depression & social anxiety in december of 2017. at the time i was prescribed zoloft to help me with these things , but my mom made me discontinue my use because she was afraid it would make my suicidal thoughts worse. i have attempted once & and am working through therapy to
jay19tay
in
Anxiety and Depression Support
6 years ago
Aggressive metastic Very high alk phos
Hi I am new here. Diagnosed March 2018. Bone mets in skull, jaw, arms, spine, ribs, pelvic, hips. Too many to count. No Gleason score just says treat as high grade. Alk phos level 4038. 58% from bones 42% from liver. Has anyone had alk phos this high? Firmagon 03-26 and Lupron 04-09-2018.
Hi I am new here. Diagnosed March 2018. Bone mets in skull, jaw, arms, spine, ribs, pelvic, hips. Too many to count. No Gleason score just says treat as high grade. Alk phos level 4038. 58% from bones 42% from liver. Has anyone had alk phos this high? Firmagon 03-26 and Lupron 04-09-2018.
Br1950
in
Advanced Prostate Cancer
6 years ago
Blood results
Hi all, I've been poorly, for around 4 years now, seen lots of different specialists, had loads different tests etc & last week I had my bloods done again & they found I have a positive ANA, SSA & Smooth Muscle, but when I'm tested for Lupus, it's inconclusive, this will be my 2 test, now need testing
Hi all, I've been poorly, for around 4 years now, seen lots of different specialists, had loads different tests etc & last week I had my bloods done again & they found I have a positive ANA, SSA & Smooth Muscle, but when I'm tested for Lupus, it's inconclusive, this will be my 2 test, now need testing
Angellealea1
in
LUPUS UK
6 years ago
Speech Problems with Type 1A CMT
I was only diagnosed with Charcot Marie Tooth 1 years ago because the doctors I consulted in regional Australia, where I live, have no idea about CMT. I was treated for 30 years for arthritis - God, I was so angry. I now have a spinal cord stimulator in my back to lessen the pain of the Scoliosis
I was only diagnosed with Charcot Marie Tooth 1 years ago because the doctors I consulted in regional Australia, where I live, have no idea about CMT. I was treated for 30 years for arthritis - God, I was so angry. I now have a spinal cord stimulator in my back to lessen the pain of the Scoliosis
Hidden
in
Charcot-Marie-Tooth UK
6 years ago
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