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Hey everyone my name is Lee, I run a lupus awareness page on Instagram and Facebook under Lupus1on1. I also host a monthly support group (currently via Zoom) to support other warriors. I was diagnosed with SLE in 2015 and Sjogren's syndrome in 2016. Please feel free to check out my pages and message
Hey everyone my name is Lee, I run a lupus awareness page on Instagram and Facebook under Lupus1on1. I also host a monthly support group (currently via Zoom) to support other warriors. I was diagnosed with SLE in 2015 and Sjogren's syndrome in 2016. Please feel free to check out my pages and message
Lupus1on1
in
LUPUS UK
4 years ago
W6R3... then injury!
Got within 60 seconds of completing the full 25 minutes, (boring, rather than exhausting) and I pulled a muscle in my calf!! Think I was trying to run faster downhill at the end; a) Jo Whiley told me to sprint if I can b) I’d run up 2 steep hills and wanted to make time up on my PB. Then the muscle
Got within 60 seconds of completing the full 25 minutes, (boring, rather than exhausting) and I pulled a muscle in my calf!! Think I was trying to run faster downhill at the end; a) Jo Whiley told me to sprint if I can b) I’d run up 2 steep hills and wanted to make time up on my PB. Then the muscle
Mitchm77
in
Couch to 5K
4 years ago
Intralipid infusion
Hi hi Those of you have gone through intralipid infusion in FET. How many infusion did you go through? When was your first one (before FET or same day) and did you take prednisolone with it? Hope you have a nice day.
Hi hi Those of you have gone through intralipid infusion in FET. How many infusion did you go through? When was your first one (before FET or same day) and did you take prednisolone with it? Hope you have a nice day.
JanuaRuna
in
Fertility Network UK
4 years ago
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Has anyone switched injection medicine? My first post to you all.
I have a bleeding retina and have been getting Eylea injections for one year, 2 rounds of laser surgery and my vision keeps deteriorated. I feel sick for 1 to 2 days after each injection. I have asked to switch to Lucentis which is not as strong. Has anyone had any luck in switching medicine?
I have a bleeding retina and have been getting Eylea injections for one year, 2 rounds of laser surgery and my vision keeps deteriorated. I feel sick for 1 to 2 days after each injection. I have asked to switch to Lucentis which is not as strong. Has anyone had any luck in switching medicine?
Thisisapain
in
Macular Society
4 years ago
Dry tongue back pain
Just me again. 😩 I keep waking up with dry mouth in the middle of the night. My tongue is red irritated and slightly swollen. I’m worried this is a sign of something terrible and I can’t get back to sleep. Also my mid to lower back is hurting so much. I feel like I’m an old woman at age 37!
Just me again. 😩 I keep waking up with dry mouth in the middle of the night. My tongue is red irritated and slightly swollen. I’m worried this is a sign of something terrible and I can’t get back to sleep. Also my mid to lower back is hurting so much. I feel like I’m an old woman at age 37!
JBCADR
in
Pernicious Anaemia Society
4 years ago
What medication do I stop before blood tests?
Having blood tests for thyroid function. I know not to take my levothyroxine before the test, but do I also need to stop vitamin b2? I take 400mg B2 and 80mg Propanalol to help prevent migraines, not sure if they will interfere with results? Thanks
Having blood tests for thyroid function. I know not to take my levothyroxine before the test, but do I also need to stop vitamin b2? I take 400mg B2 and 80mg Propanalol to help prevent migraines, not sure if they will interfere with results? Thanks
Mum23girls
in
Thyroid UK
4 years ago
Edoxaban side effects
My husband takes Edoxaban 60mgs daily he hasn’t been great since starting these.His HB went down to 12.9 he very occasionally has double vision and occasionally dizzy feeling at different times.GP not concerned but I’m worried all other blood tests perfect. Has anyone else experienced this. Thank you
My husband takes Edoxaban 60mgs daily he hasn’t been great since starting these.His HB went down to 12.9 he very occasionally has double vision and occasionally dizzy feeling at different times.GP not concerned but I’m worried all other blood tests perfect. Has anyone else experienced this. Thank you
Golfinglegend500
in
AF Association
4 years ago
Critical illness Insurance & ET
I’m very stressed... I’ve had to refer my critical illness claim to the Financial Ombudsman as my insurers are still refusing to pay. My Haematologist has written several times to them explaining my condition but their complaints department are still refusing to pay. Has anyone else had the same
I’m very stressed... I’ve had to refer my critical illness claim to the Financial Ombudsman as my insurers are still refusing to pay. My Haematologist has written several times to them explaining my condition but their complaints department are still refusing to pay. Has anyone else had the same
Fizzydog
in
MPN Voice
4 years ago
Blood pressure and DRY AMD
I have just had to go on blood pressure tablets.i have dry AMD..research information says basically that this will speed up the deterioration of AMD..I'm scared about losing my eyesight..but have to take the pills..anybody got more information or first hand experience with is problem.im feeling cornered
I have just had to go on blood pressure tablets.i have dry AMD..research information says basically that this will speed up the deterioration of AMD..I'm scared about losing my eyesight..but have to take the pills..anybody got more information or first hand experience with is problem.im feeling cornered
horseaddict
in
Macular Society
4 years ago
B12 injections
Hi just phoned my doctors surgery - on hold for 31 minutes and when i tried to make appointment was told i have to email nurse who will check my records and see if I am eligible !!! I have been having them for many many years and now they are casting doubt on whether that was necessary !!! I had a lung
Hi just phoned my doctors surgery - on hold for 31 minutes and when i tried to make appointment was told i have to email nurse who will check my records and see if I am eligible !!! I have been having them for many many years and now they are casting doubt on whether that was necessary !!! I had a lung
Whitch
in
Pernicious Anaemia Society
4 years ago
B12 injection
Hi just phoned my doctors surgery - on hold for 31 minutes and when i tried to make appointment was told i have to email nurse who will check my records and see if I am eligible !!! I have been having them for many many years and now they are casting doubt on whether that was necessary !!! I had a
Hi just phoned my doctors surgery - on hold for 31 minutes and when i tried to make appointment was told i have to email nurse who will check my records and see if I am eligible !!! I have been having them for many many years and now they are casting doubt on whether that was necessary !!! I had a
Whitch
in
Thyroid UK
4 years ago
Hi everyone
Was just wondering if you can take pregnenolone as this is supposed to help with arthritis or DHEA whilst on thyroxine. I am menopausal at the moment and read that these are the natural way and can help instead of HRT
Was just wondering if you can take pregnenolone as this is supposed to help with arthritis or DHEA whilst on thyroxine. I am menopausal at the moment and read that these are the natural way and can help instead of HRT
Wilky21
in
Thyroid UK
4 years ago
Trabeculectomy circumstances
Hello, for those of you who have had a trabeculectomy suggested or performed, what are some of the circumstances you have experienced leading up to that? Currently my IOPs are at 29 and 27 after residing in the teens for many years. I'm 53, I take three sets of eye drops (and have taken different types
Hello, for those of you who have had a trabeculectomy suggested or performed, what are some of the circumstances you have experienced leading up to that? Currently my IOPs are at 29 and 27 after residing in the teens for many years. I'm 53, I take three sets of eye drops (and have taken different types
CTinUS
in
Glaucoma UK
4 years ago
Is it returning, am I paranoid ?
GCA diagnosed about 5 years ago. Biopsy was insufficient so diagnosis on basis of symptoms. I had Ben on pred for 6 week for Pmr by then anyway any the artery they took was too small. Consultant to me well over a year ago that it had run it’s course and was gone. Both the GCA an the PMR. The Pmr has
GCA diagnosed about 5 years ago. Biopsy was insufficient so diagnosis on basis of symptoms. I had Ben on pred for 6 week for Pmr by then anyway any the artery they took was too small. Consultant to me well over a year ago that it had run it’s course and was gone. Both the GCA an the PMR. The Pmr has
doubtfully
in
PMRGCAuk
4 years ago
Bereavement & support
I lost my dad to covid in April. It’s surrounding me and all I hear about all day every day is covid / lockdown / quarantine / deaths and illness etc. It’s overwhelming. I’ve been going through a downward spiral of self destruction, binge drinking until I can’t remember things and even lashing out when
I lost my dad to covid in April. It’s surrounding me and all I hear about all day every day is covid / lockdown / quarantine / deaths and illness etc. It’s overwhelming. I’ve been going through a downward spiral of self destruction, binge drinking until I can’t remember things and even lashing out when
maemae86
in
Mental Health Support
4 years ago
MS diagnosis vs CIS Diagnosis
Hey guys....my neurologist diagnosed me with RRMS a few weeks ago... i have been waiting on my rebif... the doctor put on the paper work CIS... probably because I’ve only had one episode... so lifeline assistance said RRMS is a requirement for them... my doctor never told me he changed my diagnosis.
Hey guys....my neurologist diagnosed me with RRMS a few weeks ago... i have been waiting on my rebif... the doctor put on the paper work CIS... probably because I’ve only had one episode... so lifeline assistance said RRMS is a requirement for them... my doctor never told me he changed my diagnosis.
Newlyfe
in
My MSAA Community
4 years ago
If my wet MD eye "fails," can someone tell me what to expect? How about the effects on my other eye, if any?
My wonderful opthamologist, who has been injecting Avastin for about 18 months in my wet MD eye, told me during a recent visit that "You've really beaten the odds, Mary. Most people fail within the first 4-8 months." When I got home, I thought about the word "fail," which has an ominous sound. I googled
My wonderful opthamologist, who has been injecting Avastin for about 18 months in my wet MD eye, told me during a recent visit that "You've really beaten the odds, Mary. Most people fail within the first 4-8 months." When I got home, I thought about the word "fail," which has an ominous sound. I googled
whiskbroom
in
Macular Society
4 years ago
Lots of black & circular floaters + bloodshot eye after my last Avastin injection. Should I worry?
I have been having regular Avastin shots for 18 months, with no progression of the wet MD. I've had floaters before, but not this many so frequently. I've also had large black circular floaters (from the glycerin used in the packing, from what I've read) which eventually disappeared. Now my floaters
I have been having regular Avastin shots for 18 months, with no progression of the wet MD. I've had floaters before, but not this many so frequently. I've also had large black circular floaters (from the glycerin used in the packing, from what I've read) which eventually disappeared. Now my floaters
whiskbroom
in
Macular Society
4 years ago
Lupus SLE - Dry Mouth
Hi there, I’ve SLE which has been very well managed on hydroxychloroquine and Methotrexate. However, this past four months I’ve had a VERY stressful time. Constant minimal sleep, no appetite and weight loss. Now on anti depressants too. I’m now suffering from a dry mouth in that I can’t get through
Hi there, I’ve SLE which has been very well managed on hydroxychloroquine and Methotrexate. However, this past four months I’ve had a VERY stressful time. Constant minimal sleep, no appetite and weight loss. Now on anti depressants too. I’m now suffering from a dry mouth in that I can’t get through
Sin123
in
LUPUS UK
4 years ago
Eyes burning, bloodshot, blurred eye sight.
I woke up with a shock late last night, with incredibly painful eyes. They appeared very bloodshot and were watering copiously. I was unable to open the worst eye properly and my vision seemed distorted and blurred. I poured eyedrops ( for dry eyes) into them and did an eyebath. Eventually it settled
I woke up with a shock late last night, with incredibly painful eyes. They appeared very bloodshot and were watering copiously. I was unable to open the worst eye properly and my vision seemed distorted and blurred. I poured eyedrops ( for dry eyes) into them and did an eyebath. Eventually it settled
SheffieldJane
in
PMRGCAuk
4 years ago
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