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Experiences with
Systemic sclerosis
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Nailfold infection
Is this connected to my
Systemic
Sclerosis
or just a coincident. Thanks for any thoughts on this.
Is this connected to my
Systemic
Sclerosis
or just a coincident. Thanks for any thoughts on this.
janetfmauk
in
Scleroderma & Raynaud's UK (SRUK)
4 months ago
Systemic Sclerosis and Itchy Scalp
Hi, I was diagnosed with SSC last year - typical symptoms. Recently my scaclp has been driving me mad with an ever increasing itchy patch. Can anyone recommend a soothing shampoo?
Hi, I was diagnosed with SSC last year - typical symptoms. Recently my scaclp has been driving me mad with an ever increasing itchy patch. Can anyone recommend a soothing shampoo?
Skrubbah
in
Scleroderma & Raynaud's UK (SRUK)
3 months ago
CREST systemic sclerosis
spent the day at the Sheffield hospital yesterday having a heart catheterisation and when all results were in the consultant said I have developed pulmonary hypertension on top of my Scleroderma. Don’t know how I feel about this yet.
spent the day at the Sheffield hospital yesterday having a heart catheterisation and when all results were in the consultant said I have developed pulmonary hypertension on top of my Scleroderma. Don’t know how I feel about this yet.
Joan59
in
Scleroderma & Raynaud's UK (SRUK)
7 months ago
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Life Insurance
Hi, Been diagnosed with ltd
systemic
sclerosis
and fibromyalgia Jun 23, has had Raynaud's for a good 10+ years. I'm currently looking at getting life insurance and have not been prepared for the difficulty! (Previous policy was done a long time ago prior to the change in my health.)
Hi, Been diagnosed with ltd
systemic
sclerosis
and fibromyalgia Jun 23, has had Raynaud's for a good 10+ years. I'm currently looking at getting life insurance and have not been prepared for the difficulty! (Previous policy was done a long time ago prior to the change in my health.)
beaglemum22
in
Scleroderma & Raynaud's UK (SRUK)
2 months ago
Newly diagnosed with limited systemic sclerosis
I was diagnosed in September 2023. I’m currently on prednisolone and hydroxycholoquine. I’ve struggled with fatigue for close to 2 years now and it has been the most debilitating symptom so far. In the past few weeks my hands have become very achey, they were slightly achey before but now it’s a lot
I was diagnosed in September 2023. I’m currently on prednisolone and hydroxycholoquine. I’ve struggled with fatigue for close to 2 years now and it has been the most debilitating symptom so far. In the past few weeks my hands have become very achey, they were slightly achey before but now it’s a lot
Morepasta
in
Scleroderma & Raynaud's UK (SRUK)
4 months ago
Topical steroid & osteoporosis
Hi, I have severe osteoporosis as well as diffuse
systemic
sclerosis
. I am having 6 monthly injections of denosumab. I also have chronic ulcers on feet which are being looked after by tissue viability. I have just finished a 2 week course of a strong topical steroid cream with this week off.
Hi, I have severe osteoporosis as well as diffuse
systemic
sclerosis
. I am having 6 monthly injections of denosumab. I also have chronic ulcers on feet which are being looked after by tissue viability. I have just finished a 2 week course of a strong topical steroid cream with this week off.
Loobyloo12
in
Scleroderma & Raynaud's UK (SRUK)
5 months ago
Outdoor working
Hi I was diagnosed with
systemic
sclerosis
in Jan this year. I am concerned about the effect my job has on my condition and if I should be looking to change. I work outdoors 5 days a week all year round.
Hi I was diagnosed with
systemic
sclerosis
in Jan this year. I am concerned about the effect my job has on my condition and if I should be looking to change. I work outdoors 5 days a week all year round.
ApusApus
in
Scleroderma & Raynaud's UK (SRUK)
2 months ago
Surgery and immuno suppressants
I would be interested to know the experience of others with
systemic
sclerosis
who have had to have surgery of any kind. Thank you.
I would be interested to know the experience of others with
systemic
sclerosis
who have had to have surgery of any kind. Thank you.
cheeselover342
in
Scleroderma & Raynaud's UK (SRUK)
5 months ago
Royal Free visit
I have positive ANA Centromere ,but that also doesn’t mean a definite diagnosis for
Systemic
Sclerosis
,they advised that can sometimes be caused by the Raynauds?.
I have positive ANA Centromere ,but that also doesn’t mean a definite diagnosis for
Systemic
Sclerosis
,they advised that can sometimes be caused by the Raynauds?.
Buttsy
in
Scleroderma & Raynaud's UK (SRUK)
3 months ago
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
10 months ago
Thin Leg
Is this anything to do with limited
systemic
sclerosis
(ANA centromere positive) or is it something else? should I mention to my rheumatologist or my GP? I take Plaquenil for joint pain/RA and omeprazole for GERD/hiatus hernia. I also have Raynaud's mainly hands and feet.
Is this anything to do with limited
systemic
sclerosis
(ANA centromere positive) or is it something else? should I mention to my rheumatologist or my GP? I take Plaquenil for joint pain/RA and omeprazole for GERD/hiatus hernia. I also have Raynaud's mainly hands and feet.
llamehtdos
in
Scleroderma & Raynaud's UK (SRUK)
7 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)
9 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
Elimination of symptoms through change of diet (such as AIP) - has anyone tried it?
I have been speaking with the sister of a friend recently, who is battling various autoimmune diseases for 16 years now (hashimoto, RA and recently also diagnosed with
systemic
sclerosis
and polymyositis), who has told me about this.
I have been speaking with the sister of a friend recently, who is battling various autoimmune diseases for 16 years now (hashimoto, RA and recently also diagnosed with
systemic
sclerosis
and polymyositis), who has told me about this.
hunkyd0ry
in
Scleroderma & Raynaud's UK (SRUK)
26 days ago
Tofacitinib
Hi, I’ve posted on here a few times about large areas of calcinosis ( I have diffuse
systemic
sclerosis
) but as it’s a rare side of dSSc I have had very little response regarding others having this .
Hi, I’ve posted on here a few times about large areas of calcinosis ( I have diffuse
systemic
sclerosis
) but as it’s a rare side of dSSc I have had very little response regarding others having this .
Eden1234
in
Scleroderma & Raynaud's UK (SRUK)
1 month 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)
11 months 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)
10 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
5 months 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)
10 months 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)
11 months ago
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