Search
Search
About
Log in
Join
Experiences with
Systemic sclerosis
Posts
Communities
370 public posts
Filter results
Anyone applied for/ been awarded PIP?
I’m wondering whether anyone on here has been successful in applying for PIP due to the problems caused by
Systemic
sclerosis
and if so what points/ areas it was awarded on. Unfortunately since my diagnosis last year I’m increasingly struggling.
I’m wondering whether anyone on here has been successful in applying for PIP due to the problems caused by
Systemic
sclerosis
and if so what points/ areas it was awarded on. Unfortunately since my diagnosis last year I’m increasingly struggling.
Horseymum
in
Scleroderma & Raynaud's UK (SRUK)
7 months ago
Is it possible for me to get back to skateboard with autoimmune disease ever?Or do I need to give it up forever?
Hi everyone I have an autoimmune disease they say it might be lupus and myosis and
Systemic
Sclerosis
. I don't even now which one it is or if it's all of them combined. I got diagnosed in 2022 and at this point all exercise and sports declined to none.
Hi everyone I have an autoimmune disease they say it might be lupus and myosis and
Systemic
Sclerosis
. I don't even now which one it is or if it's all of them combined. I got diagnosed in 2022 and at this point all exercise and sports declined to none.
Crow9
in
LUPUS UK
9 months ago
Systemic Sclerosis symptoms during pregnancy
Was diagnosed with limited cutaneous
systemic
sclerosis
5 years ago (Scl-70 and ANA positive) but had symptoms since I was 11.
Was diagnosed with limited cutaneous
systemic
sclerosis
5 years ago (Scl-70 and ANA positive) but had symptoms since I was 11.
Redcurrant7
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
I have been diagnosed with SSc-PAH
I have had lots of tests done and they have found i have mild Emphysema and
systemic
sclerosis
associated pulmonary arterial hypertension (SSc-PAH) and would like to talk to someone with similar condition.
I have had lots of tests done and they have found i have mild Emphysema and
systemic
sclerosis
associated pulmonary arterial hypertension (SSc-PAH) and would like to talk to someone with similar condition.
Shackackarn
in
Lung Conditions Community Forum
1 year ago
Scleroderma and Multiple Sclerosis
Hello, one of our members in our group has been diagnosed with both Scleroderma and Multiple Sclerosis. Is there anyone out there who also has this dire combination who she can chat with? Thank you Heather
Hello, one of our members in our group has been diagnosed with both Scleroderma and Multiple Sclerosis. Is there anyone out there who also has this dire combination who she can chat with? Thank you Heather
NZHeather
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
PICC LINE CATHETER FOR SYSTEMIC SCLEROSIS
I have been diagnosed with
systemic
sclerosis
and have been undergoing treatment with various medications. Recently, my doctors planned to prescribe intravenous cyclophosphamide and methylprednisolone to help manage my condition.
I have been diagnosed with
systemic
sclerosis
and have been undergoing treatment with various medications. Recently, my doctors planned to prescribe intravenous cyclophosphamide and methylprednisolone to help manage my condition.
Lo1234
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Gut and hands!
As luck would have it the same GP who happened to have a special interest in rheumatology and dermatology, immediately suspected
systemic
sclerosis
and referred me to specialists in both fields.
As luck would have it the same GP who happened to have a special interest in rheumatology and dermatology, immediately suspected
systemic
sclerosis
and referred me to specialists in both fields.
cheeselover342
in
Scleroderma & Raynaud's UK (SRUK)
10 months ago
systemic sclerosis
I have Sjogren's and
Systemic
sclerosis
but all the Doctors ignore the intolerable symptom of hot and cold I suffer
I have Sjogren's and
Systemic
sclerosis
but all the Doctors ignore the intolerable symptom of hot and cold I suffer
sessull
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Tips for starting mycophenolate
(Diagnosed with diffuse
systemic
sclerosis
.) Are there any precautions / tips you can share - especially in respect to sun exposure and any other common side effects?
(Diagnosed with diffuse
systemic
sclerosis
.) Are there any precautions / tips you can share - especially in respect to sun exposure and any other common side effects?
Nw6London
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Infertility with Scleroderma & Raynauds?
Hi all, I was diagnosed with limited
systemic
sclerosis
two years ago. Also have severe Raynauds and Hashimotos. I've recently been told that my eggs were so bad they were falling apart when trying to be fertilised through IVF. We've just given up after five failed rounds.
Hi all, I was diagnosed with limited
systemic
sclerosis
two years ago. Also have severe Raynauds and Hashimotos. I've recently been told that my eggs were so bad they were falling apart when trying to be fertilised through IVF. We've just given up after five failed rounds.
kayray87
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Random leg warmth
I have
systemic
sclerosis
(thankfully mildly), fibromyalgia and a few other add ons. In the last few days I keep getting a warm sensation in the front of my left thigh muscle. It's quite random and doesn't last long. Dr.
I have
systemic
sclerosis
(thankfully mildly), fibromyalgia and a few other add ons. In the last few days I keep getting a warm sensation in the front of my left thigh muscle. It's quite random and doesn't last long. Dr.
Oleander1
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Fatigue and joint and body pain- what helps?
I received my formal diagnosis of limited
systemic
sclerosis
last week and am waiting to have ECHO and PFT to see it has affected my organs yet.
I received my formal diagnosis of limited
systemic
sclerosis
last week and am waiting to have ECHO and PFT to see it has affected my organs yet.
Horseymum
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Mycophenolate, sun protection and swimwear
Hi, I'm currently on mycophenolate (mg / x2 / twice daily) and in the active stages of
systemic
sclerosis
. I have had some very mild skin tightening on the hands, but this has reversed. I used to be on hydroxychloroquine for about 6m then moved on to my mycophenolate.
Hi, I'm currently on mycophenolate (mg / x2 / twice daily) and in the active stages of
systemic
sclerosis
. I have had some very mild skin tightening on the hands, but this has reversed. I used to be on hydroxychloroquine for about 6m then moved on to my mycophenolate.
Nw6London
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
left side throat ,tongue discomfort
I am wondering if this could be related to
systemic
sclerosis
? I am very worried though as my brother had throat cancer which started in his tonsil bed, anything unusual in that area really scares me, but I feel my GP will probably just dismiss this feeling.
I am wondering if this could be related to
systemic
sclerosis
? I am very worried though as my brother had throat cancer which started in his tonsil bed, anything unusual in that area really scares me, but I feel my GP will probably just dismiss this feeling.
Buttsy
in
Scleroderma & Raynaud's UK (SRUK)
11 months ago
systemic sine sclerosis
Sines
systemic
sclerosis
morning all I have a question alongside all of my other symptoms I seem to be getting sore gums and ulcers in my mouth this happens when I’m in a flare up and is painful and distressing any tips ??
Sines
systemic
sclerosis
morning all I have a question alongside all of my other symptoms I seem to be getting sore gums and ulcers in my mouth this happens when I’m in a flare up and is painful and distressing any tips ??
Jaq1971
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
need to have pacemaker fitted
Hi I have had Diffuse
Systemic
Sclerosis
for about 14 years and been told very recently I need a pacemaker. Just wondered if anyone here has had one fitted and what their story is, i.e., why pacemaker had to be fitted, , how was the procedure and how they are now. Thanks in advance 😊
Hi I have had Diffuse
Systemic
Sclerosis
for about 14 years and been told very recently I need a pacemaker. Just wondered if anyone here has had one fitted and what their story is, i.e., why pacemaker had to be fitted, , how was the procedure and how they are now. Thanks in advance 😊
Eden1234
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Does the pill/coil halt progression?
Last weekend I finally had my laparoscopy on the NHS and received my diagnosis and treatment, I couldn’t have been happier. Please read my story here and get in touch if you want any advice: https://www.instagram.com/p/CzUKTp4tkwb/?igshid=anZzcWtpdjNuZmN3 But now I have been left feeling lost, my
Last weekend I finally had my laparoscopy on the NHS and received my diagnosis and treatment, I couldn’t have been happier. Please read my story here and get in touch if you want any advice: https://www.instagram.com/p/CzUKTp4tkwb/?igshid=anZzcWtpdjNuZmN3 But now I have been left feeling lost, my
Sophhh
in
Endometriosis UK
10 months ago
new normal blood tests
Now I’m definitively diagnosed with antibody positive
systemic
sclerosis
and get Mycophenolate, Iloprost and Losartan amongst others. Most of my problems are in stomach and lower GI.
Now I’m definitively diagnosed with antibody positive
systemic
sclerosis
and get Mycophenolate, Iloprost and Losartan amongst others. Most of my problems are in stomach and lower GI.
OldTed60
in
Scleroderma & Raynaud's UK (SRUK)
10 months ago
Weight Loss and Systemic Sclerosis
Hello Everyone I have realiaed that in the last 8 months I loss 17 lbs and has had frequent infections and pnuemonia. Now am really wondering if something is is going on. The doctors hvae me doing a set of tests, ST Scan on my lungs and I have to also do a gastrophy test. Anyone else has ever been through
Hello Everyone I have realiaed that in the last 8 months I loss 17 lbs and has had frequent infections and pnuemonia. Now am really wondering if something is is going on. The doctors hvae me doing a set of tests, ST Scan on my lungs and I have to also do a gastrophy test. Anyone else has ever been through
Anniw
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
rapid weight loss
hey all just a question I was diagnosed with
systemic
sine
sclerosis
in November last year and have many issues but I have lost 3 stone in 6 months had anyone else had a rapid weight loss with this condition ?
hey all just a question I was diagnosed with
systemic
sine
sclerosis
in November last year and have many issues but I have lost 3 stone in 6 months had anyone else had a rapid weight loss with this condition ?
Jaq1971
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
1
2
3
...
19
Next page
10
Filter results
Clear filters
Posted in
All communities
Scleroderma & Raynaud's UK (SRUK)
258 results
Endometriosis UK
19 results
Thyroid UK
15 results
View top 10 communities
Sort by
Most Relevant
Newest