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Systemic sclerosis
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I'm struggling
Unfortunately I already have been suffering for many, many years from Chronic Migraine, Fibromyalgia, Asthma, Eczema and
Systemic
Sclerosis
and in turn depression and anxiety. I tried to take my own life in 2021 and very nearly succeeded.
Unfortunately I already have been suffering for many, many years from Chronic Migraine, Fibromyalgia, Asthma, Eczema and
Systemic
Sclerosis
and in turn depression and anxiety. I tried to take my own life in 2021 and very nearly succeeded.
Kittycat2013
in
Neuro Support
1 year ago
ongoing health
I am fully aware my
systemic
sclerosis
and fibromyalgia raynaulds and esophigul spasms gerd and all of the other things that come with sclerosis are still battles I will continue to fight and that’s ok I will do this as no other choice .
I am fully aware my
systemic
sclerosis
and fibromyalgia raynaulds and esophigul spasms gerd and all of the other things that come with sclerosis are still battles I will continue to fight and that’s ok I will do this as no other choice .
Jaq1971
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Hysterectomy advice
Any advice on this would be appreciated mentioned Gynaecologist who hadn’t heard of
systemic
sclerosis
.
Any advice on this would be appreciated mentioned Gynaecologist who hadn’t heard of
systemic
sclerosis
.
Buttsy
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
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Newly Diagnosed Diffuse Systemic Sclerosis will I be able to go back to work?
Hi all, my symptoms started in November 22 and have rapidly progressed. I struggle with mobility I can’t walk far due to swollen feet and legs causing extremely tight skin and have very little use of my hands and fingers. Fatigue hits me occasionally and walking from one room to another is like completing
Hi all, my symptoms started in November 22 and have rapidly progressed. I struggle with mobility I can’t walk far due to swollen feet and legs causing extremely tight skin and have very little use of my hands and fingers. Fatigue hits me occasionally and walking from one room to another is like completing
Vicky_S
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
new job reasonable adjustments
I have had limited
systemic
sclerosis
for over 10 years with raynauds, fatigue and some digestive issues as the most noticeable symptoms. I can ask HR for reasonable adjustments- has anyone done this and if so, what did you find were the most helpful changes?
I have had limited
systemic
sclerosis
for over 10 years with raynauds, fatigue and some digestive issues as the most noticeable symptoms. I can ask HR for reasonable adjustments- has anyone done this and if so, what did you find were the most helpful changes?
quebec
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
scared newly diagnosed
I’m afraid of this diagnosis it has been two years of constant back and forth to many doctors and nobody seemed to understand what was happening to me I had no skin issues only a few spots on my hands but my ANA has come back positive for
systemic
sclerosis
it is attacking my oesophagus I cannot take
I’m afraid of this diagnosis it has been two years of constant back and forth to many doctors and nobody seemed to understand what was happening to me I had no skin issues only a few spots on my hands but my ANA has come back positive for
systemic
sclerosis
it is attacking my oesophagus I cannot take
Jaq1971
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
Implant or Injections
I am 21 diagnosed endo laparoscopy last year & had hormonal coil which is due for removal in December (I think it was containing my pain but now it isn’t)My pain is increasing dramatically so consultant has recommended implant or injections when coil is removed. I’m wondering how I am supposed to decide
I am 21 diagnosed endo laparoscopy last year & had hormonal coil which is due for removal in December (I think it was containing my pain but now it isn’t)My pain is increasing dramatically so consultant has recommended implant or injections when coil is removed. I’m wondering how I am supposed to decide
BT20
in
Endometriosis UK
1 year ago
Just diagnosed scleroderma/myositis - any help or guidance appreciated
I have just been diagnosed with overlap autoimmune disease-
systemic
sclerosis
/myositis - symptoms include raynauds, interstitial lung disease, (ILD), thickened fingers with pain and stiffness, achy thighs and upper arms.
I have just been diagnosed with overlap autoimmune disease-
systemic
sclerosis
/myositis - symptoms include raynauds, interstitial lung disease, (ILD), thickened fingers with pain and stiffness, achy thighs and upper arms.
ruablue
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Tocilizumab for systemic sclerosis (with mild ILD) - any skin improvement?
Hello dear community, I have
systemic
sclerosis
with mild ILD. Although my lung fibrosis is mild, my skin situation is getting worse.
Hello dear community, I have
systemic
sclerosis
with mild ILD. Although my lung fibrosis is mild, my skin situation is getting worse.
FelixFelicis
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
autoimmune hearing problems
Along with my UCTD with
systemic
sclerosis
gut problems I’ve developed, I’ve had hearing problems for years. I’ve never really thought it could be another autoimmune problem but recently I couldn’t hear my own voice.
Along with my UCTD with
systemic
sclerosis
gut problems I’ve developed, I’ve had hearing problems for years. I’ve never really thought it could be another autoimmune problem but recently I couldn’t hear my own voice.
Halfwayuphill
in
LUPUS UK
1 year ago
autoimmune ear problems?
Along with my UCTD with
systemic
sclerosis
gut problems I’ve developed, I’ve had hearing problems for years. I’ve never really thought it could be another autoimmune problem but recently I couldn’t hear my own voice.
Along with my UCTD with
systemic
sclerosis
gut problems I’ve developed, I’ve had hearing problems for years. I’ve never really thought it could be another autoimmune problem but recently I couldn’t hear my own voice.
Halfwayuphill
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
cold face
I have
systemic
sclerosis
, Raynaud’s, and fibromyalgia (plus other stuff). I also have stiffness and aching on the right side of my face neck and shoulder which I think is myofascial pain syndrome. However, those areas also feel very cold as though I am sitting in a draught .
I have
systemic
sclerosis
, Raynaud’s, and fibromyalgia (plus other stuff). I also have stiffness and aching on the right side of my face neck and shoulder which I think is myofascial pain syndrome. However, those areas also feel very cold as though I am sitting in a draught .
Oleander1
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
Swollen painful fingers, systemic sclerosis
They sent me for nail fold capillaroscopy & thermography in August - The results for both came back as 'Abnormal' (I could see during the test that the capillaries were damaged) Rheumatologist says its possibly early
Systemic
Sclerosis
or other connective tissue disease, and secondary Raynauds, awaiting
They sent me for nail fold capillaroscopy & thermography in August - The results for both came back as 'Abnormal' (I could see during the test that the capillaries were damaged) Rheumatologist says its possibly early
Systemic
Sclerosis
or other connective tissue disease, and secondary Raynauds, awaiting
andy7551
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
Urinary issues worried about hypertension
But a few other test have come back negative so haven’t been officially diagnosed for limited
systemic
sclerosis
yet. Any information or similarity with other people symptoms and advice would be welcomed. Thanks 🙏
But a few other test have come back negative so haven’t been officially diagnosed for limited
systemic
sclerosis
yet. Any information or similarity with other people symptoms and advice would be welcomed. Thanks 🙏
Buttsy
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Functional autoantibodies, a new paradigm in autoimmunity?
Title : As per this post Link : https://www.sciencedirect.com/science/article/abs/pii/S1568997207001115 [i]Abstract[/i] [i]The recent detection of stimulatory autoantibodies as a characteristic feature of
systemic
sclerosis
(scleroderma), established the presence of such autoantibodies as a characteristic
Title : As per this post Link : https://www.sciencedirect.com/science/article/abs/pii/S1568997207001115 [i]Abstract[/i] [i]The recent detection of stimulatory autoantibodies as a characteristic feature of
systemic
sclerosis
(scleroderma), established the presence of such autoantibodies as a characteristic
humanbean
in
Thyroid UK
1 year ago
How medical training works
S/he may be a single-handed Consultant, which means what it says: is the sole Consultant Rheumatologist magically expected to be omniscient concerning everything from tennis elbow to
systemic
sclerosis
and of course is not. If a nice sensible person s/he looks up things, consults colleagues.
S/he may be a single-handed Consultant, which means what it says: is the sole Consultant Rheumatologist magically expected to be omniscient concerning everything from tennis elbow to
systemic
sclerosis
and of course is not. If a nice sensible person s/he looks up things, consults colleagues.
Mayadill
in
PMRGCAuk
1 year ago
Systemic sclerosis and mycofit
I was on pulse therapy with cyclophosphamide infusion but the cycle of cyclophosphamide has been already finished so I have been prescribed mycofit by my doctor but this medicine cause some intestinal bowl problem and also some potential side effects like vomiting, nausea also increase the risk of skin
I was on pulse therapy with cyclophosphamide infusion but the cycle of cyclophosphamide has been already finished so I have been prescribed mycofit by my doctor but this medicine cause some intestinal bowl problem and also some potential side effects like vomiting, nausea also increase the risk of skin
Lo1234
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
ANCA MPO and Systemic sclerosis positive - Suddenly ESR 93
Hello, ANCA MPO and
Systemic
sclerosis
positive - No response to methotrexate/steroids Rituxan infusions June 2022- 6 months later, no response - Repeat Rituxan infusions December December Labs: ANCA and Scl-70 positive; IgM <25 ESR 93 markedly elevated - ESR Labs: 07/22 through 09/01/22 - "
Hello, ANCA MPO and
Systemic
sclerosis
positive - No response to methotrexate/steroids Rituxan infusions June 2022- 6 months later, no response - Repeat Rituxan infusions December December Labs: ANCA and Scl-70 positive; IgM <25 ESR 93 markedly elevated - ESR Labs: 07/22 through 09/01/22 - "
irishponies
in
Vasculitis UK
2 years ago
Systemic sclerosis
Hello everyone. I would like to know about health system in the UK and the rituximab and iloprost.
Hello everyone. I would like to know about health system in the UK and the rituximab and iloprost.
Lo1234
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
SUDDEN increase in Sed rate, or erythrocyte sedimentation rate (ESR
Hello, I want to thank everyone that shared their personal insights replying to my post "ANCA MPO and
Systemic
sclerosis
positive - Sudden ESR 93". Your comments are invaluable and I appreciate every word. Thank you, This post is focused on ESR.
Hello, I want to thank everyone that shared their personal insights replying to my post "ANCA MPO and
Systemic
sclerosis
positive - Sudden ESR 93". Your comments are invaluable and I appreciate every word. Thank you, This post is focused on ESR.
irishponies
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
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