Search
Search
About
Log in
Join
Experiences with
Systemic sclerosis
Posts
Communities
370 public posts
Filter results
howdo gain weight? If you have reflux problems?
Hi, I have been diagnosed with
systemic
sclerosis
/myositis, I lost 20kg, and I eat a lot but have no weight gain, if I eat fats I have big problems with reflux. Is anyone here experiencing the same problem? Thank you
Hi, I have been diagnosed with
systemic
sclerosis
/myositis, I lost 20kg, and I eat a lot but have no weight gain, if I eat fats I have big problems with reflux. Is anyone here experiencing the same problem? Thank you
skinnynow
in
Scleroderma & Raynaud's UK (SRUK)
3 months ago
Positive Tests no skin involvement
I received a very high positive (+++) SCL70 which stated scleroderma/
systemic
sclerosis
. GP has referred me to rheumatology which I will likely be waiting atleast 8 weeks for (urgent referal 🫣).
I received a very high positive (+++) SCL70 which stated scleroderma/
systemic
sclerosis
. GP has referred me to rheumatology which I will likely be waiting atleast 8 weeks for (urgent referal 🫣).
LooseBananas
in
Scleroderma & Raynaud's UK (SRUK)
2 months ago
Rectal prolapse
I am considered an anaesthetic risk due tomy autoimmune disease (
systemic
sclerosis
) and heart failure. I am awaiting a decision ( for last 4 months) I am not sure what to do now as it impacting on my life so much, I am unable to walk very far so unable to go out. Any advice would be welcome.
I am considered an anaesthetic risk due tomy autoimmune disease (
systemic
sclerosis
) and heart failure. I am awaiting a decision ( for last 4 months) I am not sure what to do now as it impacting on my life so much, I am unable to walk very far so unable to go out. Any advice would be welcome.
bealepup
in
Bowel Disease Support
1 month ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Systemic Sclerosis - lip augmentation at Royal Free?
Diagnosed with diffuse cutaneous
systemic
sclerosis
- thankfully no fibrosis. I don't have any skin tightening yet, thankfully as on mycophenolate 2g and that has reversed the skin involvement I had on my hands.
Diagnosed with diffuse cutaneous
systemic
sclerosis
- thankfully no fibrosis. I don't have any skin tightening yet, thankfully as on mycophenolate 2g and that has reversed the skin involvement I had on my hands.
Nw6London
in
Scleroderma & Raynaud's UK (SRUK)
4 months ago
What to expect, medication etc - First appointment since Systemic Sclerosis diagnosis
Blood test done at the appointment showed
Systemic
Sclerosis
(anti TH/TO) as well. I was advised of this diagnosis over the phone at the beginning of June. My face to face appointment is 9th August.
Blood test done at the appointment showed
Systemic
Sclerosis
(anti TH/TO) as well. I was advised of this diagnosis over the phone at the beginning of June. My face to face appointment is 9th August.
Jules1821
in
Scleroderma & Raynaud's UK (SRUK)
2 months ago
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)
6 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)
8 months ago
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)
8 months ago
looking for information on pancreas insufficiency.
I have read up, but it seems there isn’t much information whether it is connected to
Systemic
sclerosis
.
I have read up, but it seems there isn’t much information whether it is connected to
Systemic
sclerosis
.
Buttsy
in
Scleroderma & Raynaud's UK (SRUK)
3 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)
8 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)
6 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)
1 year 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)
10 months 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)
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)
8 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)
10 months 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)
5 months ago
Recently Diagnosed
Hi Everyone, I’ve recently been diagnosed with Diffuse
Systemic
Sclerosis
at 35, after about 9 months of experiencing various symptoms.
Hi Everyone, I’ve recently been diagnosed with Diffuse
Systemic
Sclerosis
at 35, after about 9 months of experiencing various symptoms.
Sebastian2024
in
Scleroderma & Raynaud's UK (SRUK)
3 days ago
My folate deficiency merry-go-round.
.🥱 I have a couple of autoimmune disorders (autoimmune thyroiditis and mild
systemic
sclerosis
for which l take Levo and Hydroxychloroquine). I had wondered about pernicious anemia but my b12 is always in the 570/680 sort of range.
.🥱 I have a couple of autoimmune disorders (autoimmune thyroiditis and mild
systemic
sclerosis
for which l take Levo and Hydroxychloroquine). I had wondered about pernicious anemia but my b12 is always in the 570/680 sort of range.
Blue_feather
in
Pernicious Anaemia Society
5 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)
11 months ago
1
2
...
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