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Systemic sclerosis
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New Diagnosis
Hi, I have been diagnosed in recent months with
Systemic
Sclerosis
. Type and severity not yet known. I am trying to come to terms with all possible associations; symptoms, medication, lifestyle. It is quite overwhelming but everyone on here seems to know so much about their own diagnoses!
Hi, I have been diagnosed in recent months with
Systemic
Sclerosis
. Type and severity not yet known. I am trying to come to terms with all possible associations; symptoms, medication, lifestyle. It is quite overwhelming but everyone on here seems to know so much about their own diagnoses!
Jedale
in
Scleroderma & Raynaud's UK (SRUK)
4 years ago
HELP! What do I do next?
I had a phone call today with my NHS consultant, I have always suffered from heavy painful periods, excessive pain and very bad hormonal acne for as long I’ve had my periods from age 11 - I am now 23. I had a diagnostic laparoscopy last August to diagnose endometriosis (they didn’t find any) and they
I had a phone call today with my NHS consultant, I have always suffered from heavy painful periods, excessive pain and very bad hormonal acne for as long I’ve had my periods from age 11 - I am now 23. I had a diagnostic laparoscopy last August to diagnose endometriosis (they didn’t find any) and they
Private12
in
Endometriosis UK
4 years ago
COIL, HORMONES... PLEASE HELP
Hi everyone, I have been advised to take my copper coil out to put the hormonal coil in to manage symptoms that look like endometriosis. However, they haven't done laparoscopy so we aren't sure yet if I do have endo. It is confusing, frustrating and overwhelming, I am not a fan of the idea of putting
Hi everyone, I have been advised to take my copper coil out to put the hormonal coil in to manage symptoms that look like endometriosis. However, they haven't done laparoscopy so we aren't sure yet if I do have endo. It is confusing, frustrating and overwhelming, I am not a fan of the idea of putting
SandraRC
in
Endometriosis UK
4 years ago
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Itchy red scalp, hair loss, TEVA thyroxine
I'm female, 30, i have been on thyroid meds for 9 years, starting with Actavis mostly, 50mcg...my thyroid was only SLIGHTLY under when i was 21 and diagnosed, i was obese at time, eating badly, i also have an autoimmune condition, called
systemic
sclerosis
....
I'm female, 30, i have been on thyroid meds for 9 years, starting with Actavis mostly, 50mcg...my thyroid was only SLIGHTLY under when i was 21 and diagnosed, i was obese at time, eating badly, i also have an autoimmune condition, called
systemic
sclerosis
....
haiiroika
in
Thyroid UK
4 years ago
wales
I have
systemic
sclerosis
and ild but no letter yet
I have
systemic
sclerosis
and ild but no letter yet
haulotte
in
Scleroderma & Raynaud's UK (SRUK)
4 years ago
Scleroderma
Hi I was told by the rheumatologist I have scleroderma
systemic
sclerosis
waiting to have CT mri scan etc. test on my lungs and heart, also a chance my non hodgkin's has returned to after many years remission are they linked in anyway??
Hi I was told by the rheumatologist I have scleroderma
systemic
sclerosis
waiting to have CT mri scan etc. test on my lungs and heart, also a chance my non hodgkin's has returned to after many years remission are they linked in anyway??
Milliemoozie
in
Scleroderma & Raynaud's UK (SRUK)
4 years ago
Limited cutaneous systemic sclerosis, secondary Raynauds and IEM versus COVID-19
Hello Reading confusing reports about this, should we who have this be self isolating? I have no lung involvement and don’t take immune-suppressant drugs. Thank you x
Hello Reading confusing reports about this, should we who have this be self isolating? I have no lung involvement and don’t take immune-suppressant drugs. Thank you x
-missymoo
in
Scleroderma & Raynaud's UK (SRUK)
4 years ago
RITUXIMAB FOR SYSTEMIC SCLEROSIS?
Hi, My consultant has stated that cyclophosphamide is the only treatment left available to me as I'm on highest dose of mycophenolate and it has kinda done all it can. My illness is relatively stable with my lung decline only minimal now but have terribly curled hands which have me struggling with everything
Hi, My consultant has stated that cyclophosphamide is the only treatment left available to me as I'm on highest dose of mycophenolate and it has kinda done all it can. My illness is relatively stable with my lung decline only minimal now but have terribly curled hands which have me struggling with everything
momo17
in
Scleroderma & Raynaud's UK (SRUK)
5 years ago
Vascular bypass
Hello, I have Raynaud’s disease and
systemic
sclerosis
. I have a blood clot in my right leg and am about to have a vascular bypass to try and resolve it. Has anyone had this procedure before?
Hello, I have Raynaud’s disease and
systemic
sclerosis
. I have a blood clot in my right leg and am about to have a vascular bypass to try and resolve it. Has anyone had this procedure before?
Thomson24
in
Scleroderma & Raynaud's UK (SRUK)
5 years ago
Period issues
I recently had gotten the hormonal coil, and 3 weeks later I had to get it removed as one the worst periods of my life nearly pushed it out completely, I was gonna get a new one the same day however it hurt 10x more than the first time I had it inserted. If the coil doesn't help my periods I'm running
I recently had gotten the hormonal coil, and 3 weeks later I had to get it removed as one the worst periods of my life nearly pushed it out completely, I was gonna get a new one the same day however it hurt 10x more than the first time I had it inserted. If the coil doesn't help my periods I'm running
starfoam
in
Women's Health
5 years ago
Ineffective oesophageal motility and excessive acid reflux
Hi all, I have a history limited cutaneous
systemic
sclerosis
. I recently had 24 hour PH and Manometry test to check for oesophageal motility issues due to food getting stuck when I eat and chocking episodes and to see the severity of the reflux I’m having.
Hi all, I have a history limited cutaneous
systemic
sclerosis
. I recently had 24 hour PH and Manometry test to check for oesophageal motility issues due to food getting stuck when I eat and chocking episodes and to see the severity of the reflux I’m having.
-missymoo
in
Oesophageal & Gastric Cancer
5 years ago
Feast or famine?
Lovely to get all this medical treatment I hear you say BUT how the heck am I supposed to do my own enenema ( cant spell that) on Monday with one hand, fibromyalgia, COPD, Spina Bifida, Scoliosis and
Systemic
Sclerosis
????
Lovely to get all this medical treatment I hear you say BUT how the heck am I supposed to do my own enenema ( cant spell that) on Monday with one hand, fibromyalgia, COPD, Spina Bifida, Scoliosis and
Systemic
Sclerosis
????
Hidden
in
Fibromyalgia Action UK
5 years ago
Raynauds and cataract operation
I have primary Sjogrens with overlap diffuse
systemic
sclerosis
and bonus Raynauds on top. The steroids I take for lung fibrosis caused cataracts. I had my right cataract op Last Friday. During the procedure I would hear an automated voice saying "continuous irrigation".
I have primary Sjogrens with overlap diffuse
systemic
sclerosis
and bonus Raynauds on top. The steroids I take for lung fibrosis caused cataracts. I had my right cataract op Last Friday. During the procedure I would hear an automated voice saying "continuous irrigation".
Stelvio
in
Scleroderma & Raynaud's UK (SRUK)
5 years ago
Renal decline questions? Unsure if I’m getting the best advice
Diagnosed with limited cutaneous
systemic
sclerosis
in 2017 secondary Raynauds started 15 years ago. Severe Raynauds, recent GI issues including IEM - ineffective oesophageal motility, GORD, mild Oesphagitus (spelling).
Diagnosed with limited cutaneous
systemic
sclerosis
in 2017 secondary Raynauds started 15 years ago. Severe Raynauds, recent GI issues including IEM - ineffective oesophageal motility, GORD, mild Oesphagitus (spelling).
-missymoo
in
Scleroderma & Raynaud's UK (SRUK)
5 years ago
Ineffective oesophageal motility and excessive reflux questions
Hi all, Diagnosed with limited cutaneous
systemic
sclerosis
and secondary Raynauds in 2017 with worsening GI issues and potential Kidney problems. I recently had 24 hour PH and Manometry test to check for oesophageal motility issues and to see the severity of the reflux I’m having.
Hi all, Diagnosed with limited cutaneous
systemic
sclerosis
and secondary Raynauds in 2017 with worsening GI issues and potential Kidney problems. I recently had 24 hour PH and Manometry test to check for oesophageal motility issues and to see the severity of the reflux I’m having.
-missymoo
in
Scleroderma & Raynaud's UK (SRUK)
5 years ago
Coming off PPIs for endoscopy
I've was diagnosed with limited
systemic
sclerosis
5 years ago although I've had symptoms for a lot longer, including reflux for 30 years and swallowing problems when eating for about 5.
I've was diagnosed with limited
systemic
sclerosis
5 years ago although I've had symptoms for a lot longer, including reflux for 30 years and swallowing problems when eating for about 5.
cowhide
in
Scleroderma & Raynaud's UK (SRUK)
5 years ago
Kidney function and scleroderma
I was diagnosed with limited
systemic
sclerosis
in 2017. Looking through my blood test notes, I can see that I have always had eGFR rate above 90 which is normal. In January 2019 that dropped to 88, and then to 76 in April.
I was diagnosed with limited
systemic
sclerosis
in 2017. Looking through my blood test notes, I can see that I have always had eGFR rate above 90 which is normal. In January 2019 that dropped to 88, and then to 76 in April.
quebec
in
Scleroderma & Raynaud's UK (SRUK)
5 years ago
The Real Roles of Vit D in Connective Tissue Diseases
Basic/clinical research include,
systemic
sclerosis
, capillaroscopy, tendocrine system of vitamin D, chronotherapy of rheumatoid arthritis. https://www.youtube.com/watch?
Basic/clinical research include,
systemic
sclerosis
, capillaroscopy, tendocrine system of vitamin D, chronotherapy of rheumatoid arthritis. https://www.youtube.com/watch?
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
5 years ago
Recent bloods show elevated creatine. Systemic sclerosis and secondary Raynauds sufferer.
Hi all I suffer with
Systemic
sclerosis
and secondary Raynauds with GI issues including dyspagia, GORD and Oesophagitis. I’ve recently had bloods taken and they found I have elevated creatine, could this be linked to the disease? Can the test be a one off elevation? Feeling concerned.
Hi all I suffer with
Systemic
sclerosis
and secondary Raynauds with GI issues including dyspagia, GORD and Oesophagitis. I’ve recently had bloods taken and they found I have elevated creatine, could this be linked to the disease? Can the test be a one off elevation? Feeling concerned.
-missymoo
in
Scleroderma & Raynaud's UK (SRUK)
5 years ago
Misty Rushing is a CRNA (nurse anesthesiologist) and a Functional Medicine 25th Dec 2019
In March 2013 she was diagnosed with severe Pulmonary Hypertension secondary to Limited
Systemic
Sclerosis
or Scleroderma. She became disabled and oxygen dependent overnight and told she had 5-10 years to live.
In March 2013 she was diagnosed with severe Pulmonary Hypertension secondary to Limited
Systemic
Sclerosis
or Scleroderma. She became disabled and oxygen dependent overnight and told she had 5-10 years to live.
liveurlife
Volunteer
in
LDN Research Trust
5 years ago
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