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Focus group with Kuma Health - 8th March 10.30am until 12pm!
We at Kuma Health are passionate about improving the lives of people with lupus. We're designing new tools and resources to make lupus care easier and more effective, and we need your voice! Join our focus group to share your experiences and help us: • Understand the challenges you face daily • Get
We at Kuma Health are passionate about improving the lives of people with lupus. We're designing new tools and resources to make lupus care easier and more effective, and we need your voice! Join our focus group to share your experiences and help us: • Understand the challenges you face daily • Get
michaellasmith
Administrator
in
LUPUS UK
3 months ago
PSA analysis 6 months after radiation
In January I will be 6 months post radiation to the prostrate and complete pelvic area. I was on Lupron for 6 months - 1 month prior and 5 months post radiation. I also was on Casodex for one month prior to the start of Lupron to lessen the flare. At 3 months post radiation PSA and Testosterone were
In January I will be 6 months post radiation to the prostrate and complete pelvic area. I was on Lupron for 6 months - 1 month prior and 5 months post radiation. I also was on Casodex for one month prior to the start of Lupron to lessen the flare. At 3 months post radiation PSA and Testosterone were
Mgtd
in
Advanced Prostate Cancer
6 months ago
worrying heart rate through the night
I have started to wear my Fitbit to bed after my AF diagnosis but I am very worried that it says, while in AF all night, my heart beat ranges from39 to 169. I take Carvedilol 12.5mg and Apixaban 5mg twice a day. It has taken me ages to be brave enough to wear it at night but I’m thinking I might be
I have started to wear my Fitbit to bed after my AF diagnosis but I am very worried that it says, while in AF all night, my heart beat ranges from39 to 169. I take Carvedilol 12.5mg and Apixaban 5mg twice a day. It has taken me ages to be brave enough to wear it at night but I’m thinking I might be
Wilky57
in
Atrial Fibrillation Support
1 month ago
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Have the new guide-lines on B12 deficiency/ Pernicious Anaemia been published yet?
They have been so delayed. .
They have been so delayed. .
wedgewood
in
Pernicious Anaemia Society
3 months ago
T3 only and heart rate
Hi all, I was started on liothyronine only 6 months ago and it has been life changing. It has resolved 4 years of debilitating symptoms, including chronic fatigue. I have faulty D102 and am a poor converter. I was finally taken off levothyroxine following abnormal ECG and tachycardia. I had a scan and
Hi all, I was started on liothyronine only 6 months ago and it has been life changing. It has resolved 4 years of debilitating symptoms, including chronic fatigue. I have faulty D102 and am a poor converter. I was finally taken off levothyroxine following abnormal ECG and tachycardia. I had a scan and
Mhaire
in
Thyroid UK
1 month ago
Would you like to know more about your antiarrhythmic medication?
Upon diagnosis of Atrial fibrillation (AF) many are prescribed antiarrhythmic medication(s). These help to restore the normal (sinus) heart rhythm. They work by blocking specific electrical conduction channels in the heart. Some can slow the activation of the heart muscle, and others slow the recovery
Upon diagnosis of Atrial fibrillation (AF) many are prescribed antiarrhythmic medication(s). These help to restore the normal (sinus) heart rhythm. They work by blocking specific electrical conduction channels in the heart. Some can slow the activation of the heart muscle, and others slow the recovery
TracyAdmin
Partner
in
Atrial Fibrillation Support
1 month ago
Half moons on fingers
Hey guys, I have an underactive thyroid and know the importance of getting vitamin levela checked Is it true that lack of or small half moons can be a sign of deficiencies? Just took a photo or my fingers, what do people think? If zoomed in, can just about see half moon on some
Hey guys, I have an underactive thyroid and know the importance of getting vitamin levela checked Is it true that lack of or small half moons can be a sign of deficiencies? Just took a photo or my fingers, what do people think? If zoomed in, can just about see half moon on some
yewotc23
in
Thyroid UK
3 months ago
Atrial Fibrillation
I'm in the process of finding out which blood thinner is best for me. Started with bisoprolol 1.25mg twice daily and feeling ill so have changed to Edoxaban causing cold hands and feet and breathlessness. I feel that my Cardiologist hasn't taken into consideration my other health conditions, i.e. Asthma
I'm in the process of finding out which blood thinner is best for me. Started with bisoprolol 1.25mg twice daily and feeling ill so have changed to Edoxaban causing cold hands and feet and breathlessness. I feel that my Cardiologist hasn't taken into consideration my other health conditions, i.e. Asthma
magriff1
in
Pain Concern
1 month ago
Low O2
CAPS survivor here. Lately my O2 has been consistently between 87% -93% resting and walking. A trip to the ER the other day showed no PE and clear lungs. They want to follow up with pulmonologist but I think it's my blood flow. My lungs feel fine! I'm on warfarin. Anybody else going through this?
CAPS survivor here. Lately my O2 has been consistently between 87% -93% resting and walking. A trip to the ER the other day showed no PE and clear lungs. They want to follow up with pulmonologist but I think it's my blood flow. My lungs feel fine! I'm on warfarin. Anybody else going through this?
grandmagigitovivi
in
Hughes Syndrome APS Forum
1 month ago
Advice needed on thyroxine management
I am hoping someone can advise me about my thyroxine dose. Here's a little background: In September 2023, I was underweight and having trouble gaining weight and suffering from anxiety. I had been on 75mcg of levothyroxine daily for an underactive thyroid. I had recently developed pins and needles
I am hoping someone can advise me about my thyroxine dose. Here's a little background: In September 2023, I was underweight and having trouble gaining weight and suffering from anxiety. I had been on 75mcg of levothyroxine daily for an underactive thyroid. I had recently developed pins and needles
SarrahMay
in
Thyroid UK
3 months ago
Two weeks after ablation and I'm on the list for a cardioversion
It's two weeks today since I had an ablation for AF. I wasn't in AF before or immediately after the procedure but felt bad on day two with racing irregular pulse, dizziness etc. I had an ecg last week which showed me to be in AF and the arrhythmia nurse has called to let me know and tell me that I've
It's two weeks today since I had an ablation for AF. I wasn't in AF before or immediately after the procedure but felt bad on day two with racing irregular pulse, dizziness etc. I had an ecg last week which showed me to be in AF and the arrhythmia nurse has called to let me know and tell me that I've
JoDogBlue
in
Atrial Fibrillation Support
1 month ago
Orgovyx and its side effects on the heart's electrical system
I've been taking Orgovyx for over two years with few side effects. But I have been experiencing episodes of dizziness and light-headedness over the last few months. My cardiologist has diagnosed bradycardia (a slow heart beat that can cause such episodes). I will need a pacemaker. I know a side effect
I've been taking Orgovyx for over two years with few side effects. But I have been experiencing episodes of dizziness and light-headedness over the last few months. My cardiologist has diagnosed bradycardia (a slow heart beat that can cause such episodes). I will need a pacemaker. I know a side effect
Boonster
in
Advanced Prostate Cancer
2 months ago
INR meter
Hi all, I had a stroke when I was 27 years old and 10 years later I got diagnosed with Palindromic Rheumatism, a form or Arthritis. With both, current medication is Warfarin and X is required. I feel limited about the regular INR control lead by coagulation variability. Thinking to get an INR meter
Hi all, I had a stroke when I was 27 years old and 10 years later I got diagnosed with Palindromic Rheumatism, a form or Arthritis. With both, current medication is Warfarin and X is required. I feel limited about the regular INR control lead by coagulation variability. Thinking to get an INR meter
HectorManzanoDiaz
in
Anticoagulation Support
2 months ago
Bevacizumab v Niraparib
I've had chemo/debulking surgery/ chemo, and have just come to the end of the post surgery chemo. I've been told all along that I will continue with Bevacizumab as a maintenance treatment (I've had 3 rounds of it alongside chemo, 2 before the surgery and 1 after). I caught COVID towards the end of
I've had chemo/debulking surgery/ chemo, and have just come to the end of the post surgery chemo. I've been told all along that I will continue with Bevacizumab as a maintenance treatment (I've had 3 rounds of it alongside chemo, 2 before the surgery and 1 after). I caught COVID towards the end of
LovemyJackRussell
in
My Ovacome
2 months ago
Prednisone for treatment of AIG
I've just been started on Prednisone or Prednisolone, immunosuppressant steroids, for treatment of Autoimmune Gastritis/autoimmune PA. This has recently, within the last few years been shown to possibly heal AIG, although not entirely cure. It is also used to prevention immune system rejection of organ
I've just been started on Prednisone or Prednisolone, immunosuppressant steroids, for treatment of Autoimmune Gastritis/autoimmune PA. This has recently, within the last few years been shown to possibly heal AIG, although not entirely cure. It is also used to prevention immune system rejection of organ
Rexz
in
Pernicious Anaemia Society
3 months ago
Fibroscan update
Hello. I had a fibroscan at a BLT roadshow 6 months ago which scared me as it was 11.7kpa and cap 218. I'm a 45yo female. I was sent for an ARFI ultrasound after this by my GP, which scored me as being at the lower end of F2 fibrosis ( 1.25m/s) with mild to moderate fatty infiltration. The ultrasound
Hello. I had a fibroscan at a BLT roadshow 6 months ago which scared me as it was 11.7kpa and cap 218. I'm a 45yo female. I was sent for an ARFI ultrasound after this by my GP, which scored me as being at the lower end of F2 fibrosis ( 1.25m/s) with mild to moderate fatty infiltration. The ultrasound
Dontworrydarling
in
British Liver Trust
6 months ago
chemo and genetic testing questions
My husband’s genetic testing of the biopsies came back. It’s 19 pages and I am having a super difficult time interpreting. His Oncologist Urologist is overwhelmed with duties and we probably won’t get reviewed at the level we need. attaching the executive summary. They said he tests positive for SPOP
My husband’s genetic testing of the biopsies came back. It’s 19 pages and I am having a super difficult time interpreting. His Oncologist Urologist is overwhelmed with duties and we probably won’t get reviewed at the level we need. attaching the executive summary. They said he tests positive for SPOP
Sunnysailor
in
Advanced Prostate Cancer
2 months ago
eating gluten prior to biopsy
Hi, I was diagnosed with coeliac disease a few years ago during covid. At that time (lockdown), the second stage of diagnosis was suspended. In my case, my blood results and the fact that I have first degree relatives with coeliac disease and I also have thyroid disease all combined to mean there was
Hi, I was diagnosed with coeliac disease a few years ago during covid. At that time (lockdown), the second stage of diagnosis was suspended. In my case, my blood results and the fact that I have first degree relatives with coeliac disease and I also have thyroid disease all combined to mean there was
lauram1978
in
Gluten Free Guerrillas
5 months ago
Lupus flare
Hi has anyone experience a lupus flare which was tiggered by a suspected infection? Ended up in hospital but they couldnt detect where the infection / virus was dispite full blood tests, urine tests as well as blood and urine culuture tests. Pretty scary.Thanks
Hi has anyone experience a lupus flare which was tiggered by a suspected infection? Ended up in hospital but they couldnt detect where the infection / virus was dispite full blood tests, urine tests as well as blood and urine culuture tests. Pretty scary.Thanks
Flows
in
LUPUS UK
3 months ago
Ambroxol update
I just received this from PD front line: Dear Mr..In January of this year, Cure Parkinson’s and partners announced funding for the starting up of a Phase 3 clinical trial to evaluate the disease modifying potential of a cough medicine called ambroxol in people with Parkinson’s. Preclinical data in models
I just received this from PD front line: Dear Mr..In January of this year, Cure Parkinson’s and partners announced funding for the starting up of a Phase 3 clinical trial to evaluate the disease modifying potential of a cough medicine called ambroxol in people with Parkinson’s. Preclinical data in models
CuriousMe12
in
Cure Parkinson's
6 months ago
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