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VEXAS, a new adult-onset autoinflammatory syndrome .
Image by @MithuRheum, Twitter. Somatic Mutations in UBA1 and Severe Adult-Onset Autoinflammatory Disease (VEXAS SYNDROME). "Most of these 25 patients (male) met clinical criteria for an inflammatory syndrome (relapsing polychondritis, SWEET'S SYNDROME, polyarteritis nodosa, or giant-cell arteritis) or
Image by @MithuRheum, Twitter. Somatic Mutations in UBA1 and Severe Adult-Onset Autoinflammatory Disease (VEXAS SYNDROME). "Most of these 25 patients (male) met clinical criteria for an inflammatory syndrome (relapsing polychondritis, SWEET'S SYNDROME, polyarteritis nodosa, or giant-cell arteritis) or
Shell567
Sweet's Syndrome UK
in
Sweet's Syndrome UK
4 years ago
Eye pain 3 days after Lucentis
So had my injection on Thursday pm and felt pain on leaving hospital but used to some discomfort. Felt sore and gritty so have been using hypromellose eye drops. Gritty feeling has gone but still feeling sore today, no redness though. Just called on call ophthalmologist who said I may have been scratched
So had my injection on Thursday pm and felt pain on leaving hospital but used to some discomfort. Felt sore and gritty so have been using hypromellose eye drops. Gritty feeling has gone but still feeling sore today, no redness though. Just called on call ophthalmologist who said I may have been scratched
MillieT
in
Macular Society
4 years ago
C4&5✅ First time with Coach Bennett; Giovanni 🤔😲😃 and Halloween
I’m a bit late with posting Wednesday’s Consolidation Run 4, no idea what I’ve been doing 🤷♀️ but anyway ... here goes 👍Please bear with me; we’ve just had a Zoom with a group of friends back home in England to celebrate the retirement of a good friend after 35 years working in the NHS... the trouble
I’m a bit late with posting Wednesday’s Consolidation Run 4, no idea what I’ve been doing 🤷♀️ but anyway ... here goes 👍Please bear with me; we’ve just had a Zoom with a group of friends back home in England to celebrate the retirement of a good friend after 35 years working in the NHS... the trouble
CazzaW
Graduate
in
Couch to 5K
4 years ago
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I m undergoing trastuzumab treatment for breast cancer. HER 2 +ve , done with chemo and surgery
How does trastuzumab treatment affect sex life of husband and wife .. any one experiencing loss of feelings , mood swings , dryness ?
How does trastuzumab treatment affect sex life of husband and wife .. any one experiencing loss of feelings , mood swings , dryness ?
Warrior4eternity
in
Breast Cancer India
4 years ago
PMR
I was wonder has anyone has a relapse of PMR and how was it ? I was PMR free for 7 years and the last two months I think it is back. I feel the same as I did then but no were as bad. I was wondering how long a relapse will last. I am diabetic and want to avoid Prednisone because of my sugar getting
I was wonder has anyone has a relapse of PMR and how was it ? I was PMR free for 7 years and the last two months I think it is back. I feel the same as I did then but no were as bad. I was wondering how long a relapse will last. I am diabetic and want to avoid Prednisone because of my sugar getting
smiley67
in
PMRGCAuk
4 years ago
First injection done - slight panic!
So I did my first buserelin injection this morning, which initially was fine, but after a few minutes I noticed a big red patch and bumpy rash which I hadn't been expecting! Queue slight panic and a call to the clinic to check 🙈 it's gone down now but I think I was so focused on the actual injection
So I did my first buserelin injection this morning, which initially was fine, but after a few minutes I noticed a big red patch and bumpy rash which I hadn't been expecting! Queue slight panic and a call to the clinic to check 🙈 it's gone down now but I think I was so focused on the actual injection
PurplePiggie
in
Fertility Network UK
4 years ago
Stomach Bloating causing Heart Palpitations
Hi anyone else having severe stomach bloating causing heart palpitations? In hospital briefly in August with AF since then nerves gone to pieces getting bad stomach bloating every day (as many as 50-60 big belches/burps) causes heart palpitations-stressed anxious it will go to full blown AF & end up
Hi anyone else having severe stomach bloating causing heart palpitations? In hospital briefly in August with AF since then nerves gone to pieces getting bad stomach bloating every day (as many as 50-60 big belches/burps) causes heart palpitations-stressed anxious it will go to full blown AF & end up
Micron5
in
British Heart Foundation
4 years ago
catecholamines
catecholamines https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4665535/ Recently, postsynaptic sympathetic norepinephrine nerve terminals were found to be degenerated as well as mesencephalic dopaminergic neurons. Cardiac norepinephrine denervation can be seen by meta-iodine-benzyl guanidine scintigraphy
catecholamines https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4665535/ Recently, postsynaptic sympathetic norepinephrine nerve terminals were found to be degenerated as well as mesencephalic dopaminergic neurons. Cardiac norepinephrine denervation can be seen by meta-iodine-benzyl guanidine scintigraphy
Hidden
in
Cure Parkinson's
4 years ago
Gallbladder Removal after effects
Hi, not sure if I am asking in the right group but anyone got any advice after having gallbladder removal, I am just over 4 weeks post op, having bouts of nausea and very very tired all the time. I am menopausal and have Hashimotos that I have posted about previously. Eating little but not got much appetite
Hi, not sure if I am asking in the right group but anyone got any advice after having gallbladder removal, I am just over 4 weeks post op, having bouts of nausea and very very tired all the time. I am menopausal and have Hashimotos that I have posted about previously. Eating little but not got much appetite
Christineblue
in
Gluten Free Guerrillas
4 years ago
All we need is Love 💖 (oxytocin)
Hello ladies... You probably all read about oxytocin’s effect on the other hormones. My question is what do you do to boost your oxytocin level? We’re always looking for things to cut out, avoid, supplements, surgery... But what do we actually do to improve our moods, happiness and self love? I’d love
Hello ladies... You probably all read about oxytocin’s effect on the other hormones. My question is what do you do to boost your oxytocin level? We’re always looking for things to cut out, avoid, supplements, surgery... But what do we actually do to improve our moods, happiness and self love? I’d love
happyseal
in
Endometriosis UK
4 years ago
FLOATERS POST LUCENTIS INJECTION
Whew I didn't realize i had joined this site at some time. I was very anxious when today this black floater,s appeared, I have been having these injections for 4+ years and today is the first time that I recall this happening. I became nauseous as the afternoon went on and eventually had a
Whew I didn't realize i had joined this site at some time. I was very anxious when today this black floater,s appeared, I have been having these injections for 4+ years and today is the first time that I recall this happening. I became nauseous as the afternoon went on and eventually had a
tayamae
in
Macular Society
4 years ago
Shielding lobby your MP's and anyone else you can
The idea that shieilding could cease on Aug 1st was always a political pipedream and only believed by fantacisists. I am appalled that people on this forem can be faced with with the choice of going to work or being sacked. I am lucky inthat I have been retired 6+ yearsmhowever I would love to return
The idea that shieilding could cease on Aug 1st was always a political pipedream and only believed by fantacisists. I am appalled that people on this forem can be faced with with the choice of going to work or being sacked. I am lucky inthat I have been retired 6+ yearsmhowever I would love to return
skodaguy
in
MPN Voice
4 years ago
Eyes
I recently wrote about my dry eyes. I have been to the opticians dry eye clinic and am doing everything he said. I also have another appointment with him later this month. I don't seem to see any improvement. About two days my eyes were quite good but then they go back to how they were. The thing I am
I recently wrote about my dry eyes. I have been to the opticians dry eye clinic and am doing everything he said. I also have another appointment with him later this month. I don't seem to see any improvement. About two days my eyes were quite good but then they go back to how they were. The thing I am
Bailybiscuit
in
NRAS
4 years ago
Receiving monthly Avastin injections now 5 days past due and I notice a decrease in vision
Being treated for CNV. Somehow, I was given a 5 week follow up form my next injection so instead of receiving my scheduled 4 week injection last week, I will get it this week. My vision was getting better and I was able to read things I couldn't read before. Yesterday my vision wasn't nearly as good
Being treated for CNV. Somehow, I was given a 5 week follow up form my next injection so instead of receiving my scheduled 4 week injection last week, I will get it this week. My vision was getting better and I was able to read things I couldn't read before. Yesterday my vision wasn't nearly as good
Edman777
in
Macular Society
4 years ago
Worried about Medication Hydroxychloroquine
Medication for RA Hydroxychloroquine I have been taking these tablets for nearly 3yrs I now have cataracts in both eyes and syrogens disease!! Has anyone else had a problem with this drug please l concerned about taking it. Thank you in anticipation .wakeham
Medication for RA Hydroxychloroquine I have been taking these tablets for nearly 3yrs I now have cataracts in both eyes and syrogens disease!! Has anyone else had a problem with this drug please l concerned about taking it. Thank you in anticipation .wakeham
wakeham
in
NRAS
4 years ago
46 with CNV and children
I am 46 year old male, in good health other than extreme myopia and CNV now, I have young children and work full time (my work involves using computer screens). Upon till age 45 I have been managing well in regards to my eye sight, had noticed however some darkening of vision in my right eye - had been
I am 46 year old male, in good health other than extreme myopia and CNV now, I have young children and work full time (my work involves using computer screens). Upon till age 45 I have been managing well in regards to my eye sight, had noticed however some darkening of vision in my right eye - had been
PHILhr
in
Macular Society
4 years ago
Ozone disinfector & sanitizer ?
The users of C-PAP machines for sleep apnea are recommended to use ozone disinfectors-sanitizers for their masks and hoses. The mask and hose is put into a tank with an activated ozone generator. I now use it also for additional disinfection (after washing and drying ) of face masks for virus-protection
The users of C-PAP machines for sleep apnea are recommended to use ozone disinfectors-sanitizers for their masks and hoses. The mask and hose is put into a tank with an activated ozone generator. I now use it also for additional disinfection (after washing and drying ) of face masks for virus-protection
janvog
in
CLL Support
4 years ago
Raising eyebrows on neuroinflammation: Study finds novel role for 'skin plumping' molecule
Scientists have discovered a novel mechanism and role in the brain for hyaluronic acid -- a clear, gooey substance popularized by cosmetic and skin care products. Hyaluronic acid may be the key in how an immune signal moves from the blood stream to the brain, activating the brain's resident immune cells
Scientists have discovered a novel mechanism and role in the brain for hyaluronic acid -- a clear, gooey substance popularized by cosmetic and skin care products. Hyaluronic acid may be the key in how an immune signal moves from the blood stream to the brain, activating the brain's resident immune cells
Kia17
in
Cure Parkinson's
4 years ago
Reducing the dose
Hello lovely people. I am continuing downwards from 60mg. Currently just reduced to 8.5 from 9. I have two possible side effects I am wondering about - the bad is the return of pelvic pain and slight difficulty getting out of bed because of it. It isn't too bad at the moment just reminds me of the
Hello lovely people. I am continuing downwards from 60mg. Currently just reduced to 8.5 from 9. I have two possible side effects I am wondering about - the bad is the return of pelvic pain and slight difficulty getting out of bed because of it. It isn't too bad at the moment just reminds me of the
Pippah45
in
PMRGCAuk
4 years ago
Allele burden results on Pegasys
After 22 months on Pegasys my Jak2 allele burden has gone from 28% 4 years ago to 24% today. I have pmf and control my blood counts with Pegasys. My counts have been normal for about a year and a half, with the exception of monocytes, which run high. I thought that some people might be interested in
After 22 months on Pegasys my Jak2 allele burden has gone from 28% 4 years ago to 24% today. I have pmf and control my blood counts with Pegasys. My counts have been normal for about a year and a half, with the exception of monocytes, which run high. I thought that some people might be interested in
charl17
in
MPN Voice
4 years ago
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