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Systemic sclerosis
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Sclerodactyly treatment suggestions?
I was diagnosed with
systemic
sclerosis
in September after suffering from Reynauds disease for many years and carpal tunnel syndrome more recently. Among other things this has now also locked my hands in to a claw shape which is called sclerodactyly.
I was diagnosed with
systemic
sclerosis
in September after suffering from Reynauds disease for many years and carpal tunnel syndrome more recently. Among other things this has now also locked my hands in to a claw shape which is called sclerodactyly.
SKivell
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Mini Pill vs Hormonal Coil
When will the mini pull become affective. I’ve been on the mini pill for about 3 1/2 months after being discharged from hospital and I’m bleeding everyday. I’ve been passing large clumps of tissue and clots the size of my hand. The pain is still there and I’m constantly exhausted as I’ve been bleeding
When will the mini pull become affective. I’ve been on the mini pill for about 3 1/2 months after being discharged from hospital and I’m bleeding everyday. I’ve been passing large clumps of tissue and clots the size of my hand. The pain is still there and I’m constantly exhausted as I’ve been bleeding
Littlebug77
in
Endometriosis UK
3 years ago
Chronic osteomyelitis and systemic sclerosis
I have 2 questions related to
systemic
sclerosis
and Raynaud's. 1. Does anyone with
systemic
sclerosis
and Raynaud's phenomenon have a non-healing ulcer and chronic osteomyelitis in their feet? 2.
I have 2 questions related to
systemic
sclerosis
and Raynaud's. 1. Does anyone with
systemic
sclerosis
and Raynaud's phenomenon have a non-healing ulcer and chronic osteomyelitis in their feet? 2.
Lo1234
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
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Systemic sclerosis and vein
I'm curious whether anyone with scleroderma or
systemic
sclerosis
has trouble opening veins for IV drugs?, And if anyone has established a cvp line for IV medications?
I'm curious whether anyone with scleroderma or
systemic
sclerosis
has trouble opening veins for IV drugs?, And if anyone has established a cvp line for IV medications?
Lo1234
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Third Covid jab as primary dose
Like many on here I take mycophenolate for limited
systemic
sclerosis
(3gms/day in my case) so I am immunosuppressed. It was recently confirmed that those immunosuppressed would be given a third jab as part of their primary course due to failure to produce antibodies.
Like many on here I take mycophenolate for limited
systemic
sclerosis
(3gms/day in my case) so I am immunosuppressed. It was recently confirmed that those immunosuppressed would be given a third jab as part of their primary course due to failure to produce antibodies.
cowhide
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Is this normal?
Hey everyone. My doctor has said after speaking with a gynaecologist that I have endo - I haven’t had a scan and finding it impossible to get one. I’ve been in agony for two weeks now, started during my period and still here afterwards - at first the pain was in the middle and now it’s moved to the right
Hey everyone. My doctor has said after speaking with a gynaecologist that I have endo - I haven’t had a scan and finding it impossible to get one. I’ve been in agony for two weeks now, started during my period and still here afterwards - at first the pain was in the middle and now it’s moved to the right
abbiecx_
in
Endometriosis UK
3 years ago
Hello I am
Hi my name is Danny and I’ve been married for 30 years to a wonderful supportive wife. I’ve been dealing with multiple sclerosis since is early as 2004, but was not diagnosed until 2009. I have been missed diagnosed twice between 2000 and 2009. Had a lumbar fusion in 2006 of my L4 L5 S1. Found in 2009
Hi my name is Danny and I’ve been married for 30 years to a wonderful supportive wife. I’ve been dealing with multiple sclerosis since is early as 2004, but was not diagnosed until 2009. I have been missed diagnosed twice between 2000 and 2009. Had a lumbar fusion in 2006 of my L4 L5 S1. Found in 2009
Hidden
in
My MSAA Community
3 years ago
Scollosis in Systemic sclerosis.
So, I want to ask Is there any role of
systemic
sclerosis
in developing scollosis? Or Anyone else who has been diagnosed with
systemic
sclerosis
have developed scollosis?
So, I want to ask Is there any role of
systemic
sclerosis
in developing scollosis? Or Anyone else who has been diagnosed with
systemic
sclerosis
have developed scollosis?
Lo1234
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Thoughts on hormonal coil?
Hello again everyone! Some TMI HERE - I'm physically and mentally exhausted currently with my pain and endometriosis symptoms. I had a coil put in 5 weeks ago after a failed lap to remove some of the endometriosis tissue (if mild - turns out my case was too severe to be treated and also there were other
Hello again everyone! Some TMI HERE - I'm physically and mentally exhausted currently with my pain and endometriosis symptoms. I had a coil put in 5 weeks ago after a failed lap to remove some of the endometriosis tissue (if mild - turns out my case was too severe to be treated and also there were other
Shels97
in
Endometriosis UK
3 years ago
Scleroderma and prolapse uterus
Hello everyone I have actually got UCTD but worsening features of Limited
Systemic
Sclerosis
in my gut. A couple of years ago I developed the features of SIBO (since confirmed), weight loss, urine retention and had a prolapse. The awful gut symptoms were the first.
Hello everyone I have actually got UCTD but worsening features of Limited
Systemic
Sclerosis
in my gut. A couple of years ago I developed the features of SIBO (since confirmed), weight loss, urine retention and had a prolapse. The awful gut symptoms were the first.
Halfwayuphill
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Covid 19 vaccine and systemic sclerosis
I have been diagnosed with limited cutaneous of
systemic
sclerosis
and I took immunisuppresive drugs called injection cyclophosphamide and injection mythyprednisolone before 3 months so should I take covid 19 vaccine? Please kindly share your experiences regarding vaccine as well as.. Thank you
I have been diagnosed with limited cutaneous of
systemic
sclerosis
and I took immunisuppresive drugs called injection cyclophosphamide and injection mythyprednisolone before 3 months so should I take covid 19 vaccine? Please kindly share your experiences regarding vaccine as well as.. Thank you
Lo1234
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Troublesome Cough!
Was diagnosed with diffuse
systemic
sclerosis
! I hope we all have a pain free day today🙏🏽 ❤️!
Was diagnosed with diffuse
systemic
sclerosis
! I hope we all have a pain free day today🙏🏽 ❤️!
eembee1
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Managing Digital Ulcers
Managing Digital Ulcers 🖐🏽 Today we revisit our recent webinar on assessing and managing digital ulcers in
systemic
sclerosis
. If you're affected by digital ulcers then this is a must watch for you. Watch - https://www.youtube.com/watch?v=Imqk_O76FhI
Managing Digital Ulcers 🖐🏽 Today we revisit our recent webinar on assessing and managing digital ulcers in
systemic
sclerosis
. If you're affected by digital ulcers then this is a must watch for you. Watch - https://www.youtube.com/watch?v=Imqk_O76FhI
Lorrainej
Volunteer
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Face cheeks raw inside with skin thickening
I have restricted mouth opening because of
systemic
sclerosis
. Skin thickening quite bad on cheeks of face. Just wondered if anyone else was bothered with the feeling the inside of their cheeks are too big for your mouth and sides of cheeks and tongue are quite raw?
I have restricted mouth opening because of
systemic
sclerosis
. Skin thickening quite bad on cheeks of face. Just wondered if anyone else was bothered with the feeling the inside of their cheeks are too big for your mouth and sides of cheeks and tongue are quite raw?
Eden1234
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Is this Raynaud's?
According to todays capillaroscopy there are no pathological changes that would indicate an increased risk of developing
systemic
sclerosis
, dermatomyositis and MCTD. My rheumatologist ordered urethral swab for ureaplasma, mycoplasma and chlamydia, it came back negative for all 3.
According to todays capillaroscopy there are no pathological changes that would indicate an increased risk of developing
systemic
sclerosis
, dermatomyositis and MCTD. My rheumatologist ordered urethral swab for ureaplasma, mycoplasma and chlamydia, it came back negative for all 3.
MNE4
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Health insurance policy
Hi there , I wondered if anyone with
systemic
sclerosis
has since applied for health insurance policy / medical coverage and had to pay a higher premium due to the condition ?
Hi there , I wondered if anyone with
systemic
sclerosis
has since applied for health insurance policy / medical coverage and had to pay a higher premium due to the condition ?
Campari-king
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
First gynaecology appointment - help needed.
Hi guys, I have my first gynaecologist appointment in 2 weeks. What kind of things should I expect? What should I ask them? I’ve been suffering with pain for a long time, pain during & after sex, bleeding after too. It’s worse around my time of ovulation. I have the hormonal coil in at the moment so
Hi guys, I have my first gynaecologist appointment in 2 weeks. What kind of things should I expect? What should I ask them? I’ve been suffering with pain for a long time, pain during & after sex, bleeding after too. It’s worse around my time of ovulation. I have the hormonal coil in at the moment so
Orangecanalwalk
in
Endometriosis UK
3 years ago
Looking for suggestions for cookbooks to help with endo diet!
Hi All, I am at the point where I am awaiting laproscopy! I have plenty of medication and a hormonal coil to help me out which all seem to assist with severe pain. What I cannot get a handle on is belly bloat, pain, and pressure that leaves me feeling lethargic everyday. I was wondering if anyone has
Hi All, I am at the point where I am awaiting laproscopy! I have plenty of medication and a hormonal coil to help me out which all seem to assist with severe pain. What I cannot get a handle on is belly bloat, pain, and pressure that leaves me feeling lethargic everyday. I was wondering if anyone has
meg73
in
Endometriosis UK
3 years ago
Does this look like Raynaud's ph.?
There are no pathological changes that would suggest of increased risk of developing
systemic
sclerosis
, dermatomyositis and MCD.Last night I took a shower and I ran out of warm water and had to shower for few minutes with cold.
There are no pathological changes that would suggest of increased risk of developing
systemic
sclerosis
, dermatomyositis and MCD.Last night I took a shower and I ran out of warm water and had to shower for few minutes with cold.
Stocki
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Dienogest & Mirena
Hi ladies I'm after a bit of advice. I have stage 4 endo already had loads of surgeries ; bowel resection, uretic stents, stoma etc. The only further surgery the hospital will do is a total clearance and as I'm only 34 they won't consider that and I understand that the risk of doing so are quite high
Hi ladies I'm after a bit of advice. I have stage 4 endo already had loads of surgeries ; bowel resection, uretic stents, stoma etc. The only further surgery the hospital will do is a total clearance and as I'm only 34 they won't consider that and I understand that the risk of doing so are quite high
katie26
in
Endometriosis UK
3 years ago
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