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91% of lupus patients report using steroids to manage symptoms
Global survey highlights urgent need for treatments with fewer side effects About 91% of lupus patients report they are currently taking or had been using oral steroids to manage their symptoms, according to a global survey of more than 7,700 patients. The World Lupus Federation (WLF) released findings
Global survey highlights urgent need for treatments with fewer side effects About 91% of lupus patients report they are currently taking or had been using oral steroids to manage their symptoms, according to a global survey of more than 7,700 patients. The World Lupus Federation (WLF) released findings
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 months ago
Do I Poke The Bear?
I had my B12 jab last week, I get these every 2 months and am grateful to have them. I've suffered B12 issues since childhood, have dim memories of blood tests and B12 jabs back in the day. I changed surgeries in the early 90's due to moving and have been with this practice ever since. So I'm not sure
I had my B12 jab last week, I get these every 2 months and am grateful to have them. I've suffered B12 issues since childhood, have dim memories of blood tests and B12 jabs back in the day. I changed surgeries in the early 90's due to moving and have been with this practice ever since. So I'm not sure
Sparklingsunshine
in
Pernicious Anaemia Society
2 months ago
Lupus Diagnosis Experience: Webinar Q&A with Beth, Khiry & Maryann - Tuesday 21st May
On World Lupus Day, we launched a brand new diagnosis awareness video featuring Beth, Khiry and Maryann who kindly shared their experiences receiving a diagnosis for lupus. We are holding a free webinar on Tuesday 21st May at 6:00pm - 7:30pm (BST) featuring Beth, Khiry and Maryann as they discuss their
On World Lupus Day, we launched a brand new diagnosis awareness video featuring Beth, Khiry and Maryann who kindly shared their experiences receiving a diagnosis for lupus. We are holding a free webinar on Tuesday 21st May at 6:00pm - 7:30pm (BST) featuring Beth, Khiry and Maryann as they discuss their
nakita_cambow
Moderator
in
LUPUS UK
2 months ago
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Are Functional Motor Symptoms Influenced by Glutamate and Glutamine Fluctuations?
I was reading an old post and someone commented about this, so naturally I asked the question and found this study: https://www.neurologylive.com/view/functional-motor-symptoms-influenced-glutamate-glutamine-fluctuations Interesting reading and saying that the "functional movements" are down to biology
I was reading an old post and someone commented about this, so naturally I asked the question and found this study: https://www.neurologylive.com/view/functional-motor-symptoms-influenced-glutamate-glutamine-fluctuations Interesting reading and saying that the "functional movements" are down to biology
Lady4
in
Functional Neurological Disorder - FND Hope
6 months ago
How UV affects us
Looking west Isle of Wight, Taken on a local walk a few weeks ago. I found this an internet explanation. Thanks to Striated Cacara. UV rays damage the cells of the skin. When the cells of the skin become damaged from UV light, it causes them to die, in a process known as apoptosis. In a person without
Looking west Isle of Wight, Taken on a local walk a few weeks ago. I found this an internet explanation. Thanks to Striated Cacara. UV rays damage the cells of the skin. When the cells of the skin become damaged from UV light, it causes them to die, in a process known as apoptosis. In a person without
IsleofWight1
in
LUPUS UK
2 months ago
Dicyclomine will work with Docetaxel ?
Will this work ? https://www.genengnews.com/topics/cancer/ibs-drug-restores-chemotherapy-effectiveness-against-resistant-prostate-cancer/
Will this work ? https://www.genengnews.com/topics/cancer/ibs-drug-restores-chemotherapy-effectiveness-against-resistant-prostate-cancer/
Manilo
in
Advanced Prostate Cancer
6 months ago
We could tell in advance if enzalutamide works on a patient: computational biology
hopefully it will be clinically tested soon ”For the study in Nature Communications, Mitrofanova's team developed computational algorithms to discover why the prostate cancer drug enzalutamide (sold under the brand name Xtandi) never works for some patients and why it eventually stops working in others
hopefully it will be clinically tested soon ”For the study in Nature Communications, Mitrofanova's team developed computational algorithms to discover why the prostate cancer drug enzalutamide (sold under the brand name Xtandi) never works for some patients and why it eventually stops working in others
Maxone73
in
Advanced Prostate Cancer
6 months ago
Low Testosterone and value of continuing Hormone Therapy
83 year old male with a question: My understanding is that the role of hormone therapy is to lower one’s testosterone level. Does hormone therapy provide additional benefits in fighting prostate cancer beyond lowering testosterone levels? I was diagnosed with high grade prostate cancer (Gleason 10
83 year old male with a question: My understanding is that the role of hormone therapy is to lower one’s testosterone level. Does hormone therapy provide additional benefits in fighting prostate cancer beyond lowering testosterone levels? I was diagnosed with high grade prostate cancer (Gleason 10
saniku
in
Advanced Prostate Cancer
6 months ago
need some guidance, feeling desperate..
My husband has advanced, Stage IV castration resistant prostate cancer. When he was diagnosed in May 2022 his PSA was 4700, he has widespread bone metastases. He stopped responding to Docetaxel, Pluvicto and is now not responding to Cabazitaxel, his PSA is now over 700. He is feeling good, no pain
My husband has advanced, Stage IV castration resistant prostate cancer. When he was diagnosed in May 2022 his PSA was 4700, he has widespread bone metastases. He stopped responding to Docetaxel, Pluvicto and is now not responding to Cabazitaxel, his PSA is now over 700. He is feeling good, no pain
Kiki27
in
Advanced Prostate Cancer
6 months ago
Extra steroids?
Having had my first cold since before the pandemic after Christmas, I went off the to the doctors about 10 days ago because although I felt I'd recovered I was deaf in one ear and had sticky eyes. One ear hadn't 'popped' on the flight out or back to the UK and once the cold kicked in it got worse. Currently
Having had my first cold since before the pandemic after Christmas, I went off the to the doctors about 10 days ago because although I felt I'd recovered I was deaf in one ear and had sticky eyes. One ear hadn't 'popped' on the flight out or back to the UK and once the cold kicked in it got worse. Currently
ladygigger
in
PMRGCAuk
6 months ago
GP wants to put me on statins but reluctant to take due to underactive thyroid and liver issues
hi - I have an underactive thyroid / hashimotos. I’m on 100mg of Levothyroxine my latest results are TSH 0.034 FREE T3 4.6 FREE THYROXINE 17.7 My GP wanted to reduce my thyroxine but I actually feel good at the moment so he’s agreed to keep it at 100mg only after a bit of arguing and having
hi - I have an underactive thyroid / hashimotos. I’m on 100mg of Levothyroxine my latest results are TSH 0.034 FREE T3 4.6 FREE THYROXINE 17.7 My GP wanted to reduce my thyroxine but I actually feel good at the moment so he’s agreed to keep it at 100mg only after a bit of arguing and having
Fergus883782
in
Thyroid UK
2 months ago
Creatine
I am on Ursofalk and very well fortunately. I take Bezafibrate for itch (life saver). I have embark on a fitness journey of Crossfit and after 12 months wish to improve even more. I am advised by my coach to take Creatine and that this is natural and improves performance and muscle recovery. Anyone
I am on Ursofalk and very well fortunately. I take Bezafibrate for itch (life saver). I have embark on a fitness journey of Crossfit and after 12 months wish to improve even more. I am advised by my coach to take Creatine and that this is natural and improves performance and muscle recovery. Anyone
amt50
in
PBC Foundation
6 months ago
Discoid lupus help please!
Hello, I've posted before whilst waiting for dermatology appointment this June for suspected discoid lupus. My initial "thing" was a small scaley patch on my eyebrow, which isn't typical looking of discoid lupus and only came up following biopsy. Well now I have a rather bigger "thing" come up on my
Hello, I've posted before whilst waiting for dermatology appointment this June for suspected discoid lupus. My initial "thing" was a small scaley patch on my eyebrow, which isn't typical looking of discoid lupus and only came up following biopsy. Well now I have a rather bigger "thing" come up on my
Nome11
in
LUPUS UK
2 months ago
Coffee - links to autoimmune?
Dear PA members - there seems to be many articles about negative and positive impacts of coffee/caffeine on autoimmune diseases. Does anyone know /researched if coffee has a negative or positive impact on AG PA? Its not clear. Many thanks
Dear PA members - there seems to be many articles about negative and positive impacts of coffee/caffeine on autoimmune diseases. Does anyone know /researched if coffee has a negative or positive impact on AG PA? Its not clear. Many thanks
PAapr22
in
Pernicious Anaemia Society
2 months ago
Help with vitamins
My ferritin and B12 keep going down despite the fact that I take supplements. Since being diagnosed with Hypothyroidism, Coeliac and SIBO they were steadily going up - I got my ferritin from 2 to 75, but in the last year it’s gone down to 39. My B12 is at 318 and was almost 500 a year ago. Does anyone
My ferritin and B12 keep going down despite the fact that I take supplements. Since being diagnosed with Hypothyroidism, Coeliac and SIBO they were steadily going up - I got my ferritin from 2 to 75, but in the last year it’s gone down to 39. My B12 is at 318 and was almost 500 a year ago. Does anyone
Flossiewestie2020
in
Thyroid UK
2 months ago
New experiences of diagnosis video for World Lupus Day
This World Lupus Day we're launching a new video with Khiry, Beth, and Maryann sharing their experiences of receiving a diagnosis of lupus. You can watch the video here: https://www.youtube.com/watch?v=7VxG2WbrsGI You can also read this blog article in which Khiry, Beth, and Maryann talk about their
This World Lupus Day we're launching a new video with Khiry, Beth, and Maryann sharing their experiences of receiving a diagnosis of lupus. You can watch the video here: https://www.youtube.com/watch?v=7VxG2WbrsGI You can also read this blog article in which Khiry, Beth, and Maryann talk about their
Debbie_kinsey
Administrator
in
LUPUS UK
2 months ago
Article: Exciting time for biological use in Lupus
https://www.healio.com/news/rheumatology/20240425/exciting-time-biologic-use-in-moderate-to-severe-lupus-rose-45-since-2021?utm_source=selligent&utm_medium=email&utm_campaign=news
https://www.healio.com/news/rheumatology/20240425/exciting-time-biologic-use-in-moderate-to-severe-lupus-rose-45-since-2021?utm_source=selligent&utm_medium=email&utm_campaign=news
VeeWat
in
LUPUS UK
2 months ago
Getting on with life.
My prostate has been removed, my psa is rising. I am not on medication. Basically, just getting on with life. Refusing to let this nonsense get me down. Thoughts anyone ?
My prostate has been removed, my psa is rising. I am not on medication. Basically, just getting on with life. Refusing to let this nonsense get me down. Thoughts anyone ?
Scouse0151
in
Advanced Prostate Cancer
6 months ago
PET Brain Scans Find ‘Smoldering’ Inflammation in Multiple Sclerosis Patients
A new study from Brigham and Women’s Hospital suggests PET brain scans could reveal hidden inflammation in patients with multiple sclerosis (MS) who are being treated with highly effective treatments. The findings were published in Clinical Nuclear Medicine.
https://appliedradiology.com/Articles
A new study from Brigham and Women’s Hospital suggests PET brain scans could reveal hidden inflammation in patients with multiple sclerosis (MS) who are being treated with highly effective treatments. The findings were published in Clinical Nuclear Medicine.
https://appliedradiology.com/Articles
BettysMom
in
My MSAA Community
2 months ago
Atarax 25mg...has anyone used it?
It's an antihistamine with sedative effects. My pharmacy suggested it as I sleep very badly and I have hay fever. After checking with my Lupus Specialist it was OK to take with my other meds I also searched online and saw its also used to treat lupus rashes and itchy skin. I'm hoping it might help my
It's an antihistamine with sedative effects. My pharmacy suggested it as I sleep very badly and I have hay fever. After checking with my Lupus Specialist it was OK to take with my other meds I also searched online and saw its also used to treat lupus rashes and itchy skin. I'm hoping it might help my
AnonLupi
in
LUPUS UK
2 months ago
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