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Experiences with
Vanishing White Matter (VWM) disease
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CRP Rise
Stopped pred in July this year & been fine since. Had bloods November & was told although bloods look good my ANCA has gone up. To be on safe side I am now being given rutuximab as maintenance once a year. Have had a lingering cold for a few weeks now & not felt my greatest had bloods before my infusion
Stopped pred in July this year & been fine since. Had bloods November & was told although bloods look good my ANCA has gone up. To be on safe side I am now being given rutuximab as maintenance once a year. Have had a lingering cold for a few weeks now & not felt my greatest had bloods before my infusion
juli-pa
in
Vasculitis UK
6 months ago
Travel Insurance
Hello all, I was diagnosed with Liver Cirrhosis last October with Gastric Varices that where treated with a coil at the time. Can anyone advise as to any travel insurance companies that specialise in Liver disease conditions? Best regards Gary
Hello all, I was diagnosed with Liver Cirrhosis last October with Gastric Varices that where treated with a coil at the time. Can anyone advise as to any travel insurance companies that specialise in Liver disease conditions? Best regards Gary
RoryG2023
in
British Liver Trust
5 months ago
Delayed Lynparza (Olaparib)Reaction
I started Lynparza (Olaparib) on 5/19 (PSA 172). By 7/5 (+7 weeks ) my PSA was 222 and it was decided to discontinue the drug, get a port, and prepare for chemo. At the first chemo appt on 8/10 (+12 weeks), the blood test showed that my PSA had fallen to 194. The general literature says you evaluate
I started Lynparza (Olaparib) on 5/19 (PSA 172). By 7/5 (+7 weeks ) my PSA was 222 and it was decided to discontinue the drug, get a port, and prepare for chemo. At the first chemo appt on 8/10 (+12 weeks), the blood test showed that my PSA had fallen to 194. The general literature says you evaluate
OhioGuy2
in
Advanced Prostate Cancer
9 months ago
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Are you ready to kick neurotoxins to the curb?
You can start by not eating them and clean up your diet. The next step is to remove neurotoxins from your personal care and cleaning products. Edit: Would you be more motivated to change your lifestyle if you understood how Roundup is used and why it's poison? Roundup kills any actively growing plant
You can start by not eating them and clean up your diet. The next step is to remove neurotoxins from your personal care and cleaning products. Edit: Would you be more motivated to change your lifestyle if you understood how Roundup is used and why it's poison? Roundup kills any actively growing plant
SilentEchoes
in
Cure Parkinson's
9 months ago
3rd Rheumy says I no longer have PMR but Rheumatoid Arthritis from X-rays and blood tests and prescribed Leflunomide
does this stuff work? The side effects for liver damage potential looks scary to me, someone that once was misdiagnosed with liver cancer and sent to Cleveland for transplant. Yes, fatty liver at age 59. Don’t drink or smoke. Pre diabetic/diabetic Also, does PMR segway into rheumatoid arthritis?
does this stuff work? The side effects for liver damage potential looks scary to me, someone that once was misdiagnosed with liver cancer and sent to Cleveland for transplant. Yes, fatty liver at age 59. Don’t drink or smoke. Pre diabetic/diabetic Also, does PMR segway into rheumatoid arthritis?
EngineerMatthew
in
PMRGCAuk
7 months ago
Overactive Bladder Syndrome
Bit strange to post this here but bear with me please. It seems that many of the med's for OAB have a side effect of high heart rate. I've been diagnosed with Paroxysmal Tachycardia and am trying Tolterodine for my OAB (which increased my comfort level considerably) but have had to stop as my monthly
Bit strange to post this here but bear with me please. It seems that many of the med's for OAB have a side effect of high heart rate. I've been diagnosed with Paroxysmal Tachycardia and am trying Tolterodine for my OAB (which increased my comfort level considerably) but have had to stop as my monthly
Oggy99
in
AF Association
9 months ago
Peginterferon
I'm wondering if anyone else is struggling with poor appetite while being o peginterferon.I have been on it for 4 years diagnosed with MF. The dose has gradually been raised but was then put up again to 135 weekly a few months ago because my spleen was enlarging.im now waiting for another appointment
I'm wondering if anyone else is struggling with poor appetite while being o peginterferon.I have been on it for 4 years diagnosed with MF. The dose has gradually been raised but was then put up again to 135 weekly a few months ago because my spleen was enlarging.im now waiting for another appointment
caroline_284
in
MPN Voice
9 months ago
And again news about clinical trials
Clinical trial tests creatine monohydrate and exercise to preserve muscle mass in prostate cancer
https://www.news-medical.net/news/20231011/Clinical-trial-tests-creatine-monohydrate-and-exercise-to-preserve-muscle-mass-in-prostate-cancer-patients.aspx (hint: been a natural bodybuilder from
Clinical trial tests creatine monohydrate and exercise to preserve muscle mass in prostate cancer
https://www.news-medical.net/news/20231011/Clinical-trial-tests-creatine-monohydrate-and-exercise-to-preserve-muscle-mass-in-prostate-cancer-patients.aspx (hint: been a natural bodybuilder from
Maxone73
in
Advanced Prostate Cancer
9 months ago
Nightly leg cramps
Hi Warriors: I have GCA since June 2023. Down to 35 mg pred from 60 mg. Tapering down by 5mg every 2 weeks til I get to l5mg. Then will go much slower. I am having very painful leg cramps every night that wake me up. after about 3/4 hrs sleep. I have to get up and walk around. Last night I took 2
Hi Warriors: I have GCA since June 2023. Down to 35 mg pred from 60 mg. Tapering down by 5mg every 2 weeks til I get to l5mg. Then will go much slower. I am having very painful leg cramps every night that wake me up. after about 3/4 hrs sleep. I have to get up and walk around. Last night I took 2
Groda
in
PMRGCAuk
9 months ago
ibs and chest pain
have had ibs for years now and get pain everyday then the anxiety kicks in and gives me chest pain. Had every scan known to man only to be told it’s just ibs,tried every medication and nothing works because the anxiety takes over anti anxiety medication and cbt does nothing to ease the pain.Doctor basically
have had ibs for years now and get pain everyday then the anxiety kicks in and gives me chest pain. Had every scan known to man only to be told it’s just ibs,tried every medication and nothing works because the anxiety takes over anti anxiety medication and cbt does nothing to ease the pain.Doctor basically
Fencer58
in
IBS Network
6 months ago
Hi new here
Hi hoping I can understand my underactive thyriod more , living in sunny Devon
Hi hoping I can understand my underactive thyriod more , living in sunny Devon
nannynett
in
Thyroid UK
7 months ago
Persistent Atrial Fibrillation
I caught a bad cold (tested negative for COVID) in November 2022 and on the day that started, I went into AFib. I wasn’t given any treatment because I was already on Warfarin due to my aortic valve replacement in March 2015. I finally saw a consultant about the AFib in May 2023 and was put on Isosorbide
I caught a bad cold (tested negative for COVID) in November 2022 and on the day that started, I went into AFib. I wasn’t given any treatment because I was already on Warfarin due to my aortic valve replacement in March 2015. I finally saw a consultant about the AFib in May 2023 and was put on Isosorbide
Gill123
in
Atrial Fibrillation Support
3 months ago
Great purchase
I want to make everyone aware of an amazing book by the world reknowned PBC expert. I encourage everyone, especially those newly diagnosed, to purchase this book - both editions if possible. Dr. Jones has been one of the contributors to The PBC Foundation's Thursdays' live Q&A sessions. This information
I want to make everyone aware of an amazing book by the world reknowned PBC expert. I encourage everyone, especially those newly diagnosed, to purchase this book - both editions if possible. Dr. Jones has been one of the contributors to The PBC Foundation's Thursdays' live Q&A sessions. This information
DonnaBoll
Administrator
in
PBC Foundation
5 months ago
High gamma gt
Hi. My husband has cirrhosis and at the moment is compensated. He is worried because his latest gamma gt blood test was over 600. Should we be worried. He has no hospital appointment till after Christmas
Hi. My husband has cirrhosis and at the moment is compensated. He is worried because his latest gamma gt blood test was over 600. Should we be worried. He has no hospital appointment till after Christmas
trekmum
in
British Liver Trust
9 months ago
QoL Please, always
Friends, please remember to include the letters "QoL" in front of your title whenever you post about quality of life things that are not directly related to prostate cancer
Friends, please remember to include the letters "QoL" in front of your title whenever you post about quality of life things that are not directly related to prostate cancer
Darryl
Partner
in
Advanced Prostate Cancer
9 months ago
Straw therapy for low speech volume
Hubby has low volume speech. He is currently doing work with the Parkinson’s Voice Project (PVP) with some success — IF he keeps up with it. We recently saw exercises for help projecting with volume using a straw (you blow into a glass of water), supposedly this helps with increasing the muscle tone
Hubby has low volume speech. He is currently doing work with the Parkinson’s Voice Project (PVP) with some success — IF he keeps up with it. We recently saw exercises for help projecting with volume using a straw (you blow into a glass of water), supposedly this helps with increasing the muscle tone
1rocketman
in
Cure Parkinson's
9 months ago
AFIB AFTER EATING
I was diagnosed with Afib 2 yrs ago. I was given metoprolol, Pradaxa and told to lose weight.I get Afib episodes 7-8 times per month lasting 4 sec to the longest very recently was 8 minutes. In the past 2 months I have been getting palpitaions after eating, which triggers the Afib. Anybody else has
I was diagnosed with Afib 2 yrs ago. I was given metoprolol, Pradaxa and told to lose weight.I get Afib episodes 7-8 times per month lasting 4 sec to the longest very recently was 8 minutes. In the past 2 months I have been getting palpitaions after eating, which triggers the Afib. Anybody else has
Fibby55
in
AF Association
6 months ago
Robotic surgery?
My mitral valve is deteriorating and surgery is in my future. I’m 72, in good health besides aFib and my valve. I’m interested in robotic surgery and if I would qualify. Curious what other folks experience is.
My mitral valve is deteriorating and surgery is in my future. I’m 72, in good health besides aFib and my valve. I’m interested in robotic surgery and if I would qualify. Curious what other folks experience is.
Ptschannen
in
Atrial Fibrillation Support
3 months ago
Help with getting a diagnosis
Hi all, I have been struggling for years now with symptoms of hypothyroidism. It’s all really come on over the last couple of years. My weight is out of control, I’m freezing all the time, my hair is dry and brittle, plus many other textbook underactive thyroid symptoms. I’ve been to the doctors
Hi all, I have been struggling for years now with symptoms of hypothyroidism. It’s all really come on over the last couple of years. My weight is out of control, I’m freezing all the time, my hair is dry and brittle, plus many other textbook underactive thyroid symptoms. I’ve been to the doctors
Punkyoungirl
in
Thyroid UK
7 months ago
Psa doubled in less than a month
I had 10 infusions of Doxytaxel. I started reading about the consequences of CDK12 and was concerned that since I have this mutation doxy was not a treatment of choice. After giving time for the PSA to settle I had a test which showed that it doubled in close to 3 months. In preparation for a CT and
I had 10 infusions of Doxytaxel. I started reading about the consequences of CDK12 and was concerned that since I have this mutation doxy was not a treatment of choice. After giving time for the PSA to settle I had a test which showed that it doubled in close to 3 months. In preparation for a CT and
spencoid2
in
Advanced Prostate Cancer
9 months ago
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