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Survey about patient care
Do you live with vasculitis, lupus, scleroderma or Sjögren's syndrome and are a UK resident? Please participate in the survey : https://ipsos.uk/RAIRDAsurvey2024 The aim of the survey is to provide valuable insights into what is working well and areas of improvement in patients' care. The survey in
Do you live with vasculitis, lupus, scleroderma or Sjögren's syndrome and are a UK resident? Please participate in the survey : https://ipsos.uk/RAIRDAsurvey2024 The aim of the survey is to provide valuable insights into what is working well and areas of improvement in patients' care. The survey in
zoe69
Vasculitis UK
in
Vasculitis UK
4 months ago
Provenge (only) - impact on overall survival
I just got insurance approval for Provenge...out of pocket is really high so now I'm doing a cost benefit analysis in my mind. I've seen many different articles showing that Provenge ALONE only extends overall survival by 4-15 months. Does that sound correct? Tall_Allen mentioned adding xofigio for
I just got insurance approval for Provenge...out of pocket is really high so now I'm doing a cost benefit analysis in my mind. I've seen many different articles showing that Provenge ALONE only extends overall survival by 4-15 months. Does that sound correct? Tall_Allen mentioned adding xofigio for
Gl448
in
Advanced Prostate Cancer
7 months ago
Help us develop a new information resource on lupus and the menopause
We're developing new information resources about lupus and the menopause. We want to find out what people want to know about the topic and how they want to learn that information, for example through a booklet, a webinar, or a video. You can tell us your thoughts via our short survey: https://forms.gle
We're developing new information resources about lupus and the menopause. We want to find out what people want to know about the topic and how they want to learn that information, for example through a booklet, a webinar, or a video. You can tell us your thoughts via our short survey: https://forms.gle
Debbie_kinsey
Administrator
in
LUPUS UK
4 months ago
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iwatch setting - AF history or AF alert?
Prior to my ablation last October I had persistent Afib. Since then I have been in NSR. I have kept my iwatch monitor set to record “AF history” and it has consistently shown AF load to be 2% or under on the weekly notifications. Should I stay on this setting or should I now set it to show alerts the
Prior to my ablation last October I had persistent Afib. Since then I have been in NSR. I have kept my iwatch monitor set to record “AF history” and it has consistently shown AF load to be 2% or under on the weekly notifications. Should I stay on this setting or should I now set it to show alerts the
Rainfern
in
Atrial Fibrillation Support
3 months ago
Weird leg pain
Hi everyone, I'm hoping someone can shed some light on this weird symptom! For almost 10 years now I have had pain in my outer calf about two inches up from my ankle on both sides. It comes on with the slightest exertion but is not there all the time. The achy pain builds and builds until I feel like
Hi everyone, I'm hoping someone can shed some light on this weird symptom! For almost 10 years now I have had pain in my outer calf about two inches up from my ankle on both sides. It comes on with the slightest exertion but is not there all the time. The achy pain builds and builds until I feel like
Womble84
in
Endometriosis UK
3 months ago
May - Vasculitis Awareness Month
May - Day 30 Vasculitis Awareness Month - Large Vessel Vasculitis is rare, can be complex and can be difficult to diagnose as symptoms may confuse the clinicians. Take a moment to read Maxine's story! To donate to VasculitisUK ‘s campaign this month to support patients and research - https://justgiving.com
May - Day 30 Vasculitis Awareness Month - Large Vessel Vasculitis is rare, can be complex and can be difficult to diagnose as symptoms may confuse the clinicians. Take a moment to read Maxine's story! To donate to VasculitisUK ‘s campaign this month to support patients and research - https://justgiving.com
zoe69
Vasculitis UK
in
Vasculitis UK
3 months ago
Low Dose Aspirin for Heart Disease
My cardiologist wants me to take a daily low dose aspirin, but I am hesitant as I have a history of proteinuria. I know the studies are inconclusive as to whether or not it helps (and even my cardiologist admits that), but I have a bad valve and my risk is moderately high for sudden death/stroke. I'm
My cardiologist wants me to take a daily low dose aspirin, but I am hesitant as I have a history of proteinuria. I know the studies are inconclusive as to whether or not it helps (and even my cardiologist admits that), but I have a bad valve and my risk is moderately high for sudden death/stroke. I'm
GoodHealthIsAJourney
in
Early CKD Support
3 months ago
To poop or not to poop, that is the question
I am about to embark on taking a phosphorous binder. I will be taking Sevelamer or Renvela at 800mg, one tablet with meals. I only eat two meals a day. WHAT can I do to prevent constipation. I already have an issue with it because of Ozempic and being on dialysis. I had to stop eating oatmeal every day
I am about to embark on taking a phosphorous binder. I will be taking Sevelamer or Renvela at 800mg, one tablet with meals. I only eat two meals a day. WHAT can I do to prevent constipation. I already have an issue with it because of Ozempic and being on dialysis. I had to stop eating oatmeal every day
Bassetmommer
in
Kidney Dialysis
7 months ago
The Flare That Keeps on Giving
I was diagnosed with PMR in August, 2022. I also have multiple sclerosis, autoimmune thyroid disease (Grave’s) and Sjogren’s Disease. With a few ups and downs when I had to temporarily increase the dose before dropping back to just above where I had been before the flare, my taper using DL’s slow 5 week
I was diagnosed with PMR in August, 2022. I also have multiple sclerosis, autoimmune thyroid disease (Grave’s) and Sjogren’s Disease. With a few ups and downs when I had to temporarily increase the dose before dropping back to just above where I had been before the flare, my taper using DL’s slow 5 week
Donna5658
in
PMRGCAuk
4 months ago
I am still struggling with treatment decisions - Help please.
I am struggling to decide on my treatment. The main point of conflict is HT or not, and LDR Brachytherapy (if I am eligible - because of a previous HOLEP) or IMRT. I also wonder if I should push hard for a 10-day earlier consultation at the risk of bad feeling. I welcome advice. In the UK - Referral
I am struggling to decide on my treatment. The main point of conflict is HT or not, and LDR Brachytherapy (if I am eligible - because of a previous HOLEP) or IMRT. I also wonder if I should push hard for a 10-day earlier consultation at the risk of bad feeling. I welcome advice. In the UK - Referral
Nordman
in
Advanced Prostate Cancer
7 months ago
Testosterone and adrenal glands
Hello all, so I finished 10 rounds of chemo docetaxel last year in September. My PSA was down to 2.8 Oct 5th. I had an orchiectomy Oct 15. My PSA started to rise. Nov 5th PSA 5.15. Dec 6th PSA 7.85. Jan 11 PSA 16.23 I have had CT and bone scan early October and another set of scans early January
Hello all, so I finished 10 rounds of chemo docetaxel last year in September. My PSA was down to 2.8 Oct 5th. I had an orchiectomy Oct 15. My PSA started to rise. Nov 5th PSA 5.15. Dec 6th PSA 7.85. Jan 11 PSA 16.23 I have had CT and bone scan early October and another set of scans early January
Eugmn
in
Advanced Prostate Cancer
7 months ago
Mirtazapine
I am taking Mirtazapine for anxiety and it has reduced my tremor quite a bit has anyone else found this?
I am taking Mirtazapine for anxiety and it has reduced my tremor quite a bit has anyone else found this?
percalona
in
Cure Parkinson's
7 months ago
Paroxysmal atrial fribulation
Me again all taking 1.25 mg of bisoprolol and 120 mmg of digoxin afib seems to be better at the moment still getting a few ectopic s working on these some how as nothing left in the medication bucket of the nhs at the moment just a general question my sleeping bpm seems to be about 44 to 50 anyone
Me again all taking 1.25 mg of bisoprolol and 120 mmg of digoxin afib seems to be better at the moment still getting a few ectopic s working on these some how as nothing left in the medication bucket of the nhs at the moment just a general question my sleeping bpm seems to be about 44 to 50 anyone
Aprilla12345
in
Atrial Fibrillation Support
3 months ago
Traclamus levels are high
I'm taking traclamus 3mg in the morning and 2mg at night consultant phoned 2day and says the level has gone up to 6 got to have another blood test in next 6wks he didn't mention he was worried about it but i am had my transplant in 2018 anyone on here to help also if he lowers the traclamus will it
I'm taking traclamus 3mg in the morning and 2mg at night consultant phoned 2day and says the level has gone up to 6 got to have another blood test in next 6wks he didn't mention he was worried about it but i am had my transplant in 2018 anyone on here to help also if he lowers the traclamus will it
Shaunwood
in
British Liver Trust
7 months ago
Barry
Hi, Diagnosed with advanced prostate cancer gleeson score 4+4, psa level 77, about 10 months ago on testosterone injections every 6 months (degarelix) , wondering how long i can go on like this before cancer comes back to bones and what will be my options then, can you survive for many years on just
Hi, Diagnosed with advanced prostate cancer gleeson score 4+4, psa level 77, about 10 months ago on testosterone injections every 6 months (degarelix) , wondering how long i can go on like this before cancer comes back to bones and what will be my options then, can you survive for many years on just
littlemount
in
Advanced Prostate Cancer
7 months ago
Warfarin
Has anyone experienced Warfarin failing you more than once? I have had three different instances where I had large clots in my lungs while on it. I am still on it (after my coverage from work denied paying for Framing injections - the only anticoagulant that hasn't failed me). Just wondering if this
Has anyone experienced Warfarin failing you more than once? I have had three different instances where I had large clots in my lungs while on it. I am still on it (after my coverage from work denied paying for Framing injections - the only anticoagulant that hasn't failed me). Just wondering if this
Willow7733
in
Hughes Syndrome APS Forum
3 months ago
PCA Cure and when?
7 months into my fight against castration sensitive prostate cancer. PSA is 0 on ADT and Abiraterone and methylprednisolone. Averaged 8,600 steps/day. I have just started to add occasional sprinting. I am taking multiple supplements. I am greatful that my PSA is 0. I work everyday and pray for
7 months into my fight against castration sensitive prostate cancer. PSA is 0 on ADT and Abiraterone and methylprednisolone. Averaged 8,600 steps/day. I have just started to add occasional sprinting. I am taking multiple supplements. I am greatful that my PSA is 0. I work everyday and pray for
Nowhereman9
in
Advanced Prostate Cancer
7 months ago
I NEVER LEARN
Hello everyone, It's 5:44 AM in California and the paramedics have just left. I called them as while lying in bed I felt nauseous, and stomach felt odd so I put my oximeter on my finger and watched it go down to 29 and then back up to baseline HR for me of 50 and it really freaked me out but I tried
Hello everyone, It's 5:44 AM in California and the paramedics have just left. I called them as while lying in bed I felt nauseous, and stomach felt odd so I put my oximeter on my finger and watched it go down to 29 and then back up to baseline HR for me of 50 and it really freaked me out but I tried
kocoach
in
Atrial Fibrillation Support
3 months ago
Nutrition and Autoimmune Thyroid disease: An expert talk
[i]TONIGHT: Join Nicole Goode, (Sunday 21st April 2024, 7pm) for an informative and engaging online expert talk on nutrition and autoimmune thyroid disease![/i] [i]Book your place via Eventbrite at: [/i] https://www.eventbrite.co.uk/e/nutrition-and-autoimmune-thyroid-disease-talk-by-nicole-goode-registration
[i]TONIGHT: Join Nicole Goode, (Sunday 21st April 2024, 7pm) for an informative and engaging online expert talk on nutrition and autoimmune thyroid disease![/i] [i]Book your place via Eventbrite at: [/i] https://www.eventbrite.co.uk/e/nutrition-and-autoimmune-thyroid-disease-talk-by-nicole-goode-registration
helvella
Thyroid UK
in
Thyroid UK
4 months ago
PBC/AIH
Hi I habe PBC crossovered with AiH . I understand it’s not hereditary but can run in families . Nobody else in my family has this (that I know of ) should my siblings / children go and get their bloods done ? I wasn’t diagnosed until i had stage 4 cirrhosis… as i had no symptoms , this was picked
Hi I habe PBC crossovered with AiH . I understand it’s not hereditary but can run in families . Nobody else in my family has this (that I know of ) should my siblings / children go and get their bloods done ? I wasn’t diagnosed until i had stage 4 cirrhosis… as i had no symptoms , this was picked
She-66
in
British Liver Trust
7 months ago
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