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Systemic sclerosis
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Confused š¤·āāļø
I was diagnosed with limited cutaneous
systemic
sclerosis
12 years ago but Iām really confused. I donāt have a problem with raynauds in fact my hands get really hot when outside.
I was diagnosed with limited cutaneous
systemic
sclerosis
12 years ago but Iām really confused. I donāt have a problem with raynauds in fact my hands get really hot when outside.
Cubbyd
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
New medication
Hi there, Iāve recently been prescribed Glyceryl Trinitrate (Deponit) patches & Hydroxychloroquine (tablets) for my limited cutaneous
systemic
sclerosis
after various previous meds not working. Has anyone else used these? Any success? Many thanks in advance for your replies š
Hi there, Iāve recently been prescribed Glyceryl Trinitrate (Deponit) patches & Hydroxychloroquine (tablets) for my limited cutaneous
systemic
sclerosis
after various previous meds not working. Has anyone else used these? Any success? Many thanks in advance for your replies š
-missymoo
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
How do you MAKE your spouse Understand **Systemic Sclerosis** an all the things it brings are *NOT your own fault!!!!
My spouse blame's Me for having these horrible chronic illnesses.... He yells at me about $$$for Dr. appointment's ... Every single month I have to go see a DR... I started having *bladder spasms* - treated for UTI ... Turned out Not to be UTI !!! Just the *Weird Disease* (I also have fibromyalgia
My spouse blame's Me for having these horrible chronic illnesses.... He yells at me about $$$for Dr. appointment's ... Every single month I have to go see a DR... I started having *bladder spasms* - treated for UTI ... Turned out Not to be UTI !!! Just the *Weird Disease* (I also have fibromyalgia
8whitetoes
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
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Dry skin and systemic sclerosis
I have
systemic
sclerosis
and secondary raynauds and saw my rheumatologist yesterday (2nd appt) we talked about things that are different in the last 6 months since I last saw him.
I have
systemic
sclerosis
and secondary raynauds and saw my rheumatologist yesterday (2nd appt) we talked about things that are different in the last 6 months since I last saw him.
Sylviaherring
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Shoulder Ultrasound
[/i] I have diffuse
systemic
sclerosis
and taking myclophenate. Any one else suffering from anything similar - just means i cant lift my arms as far as i would like to or put them over my head. I have been doing various stretching exercises and have hydro in the next week or so.
[/i] I have diffuse
systemic
sclerosis
and taking myclophenate. Any one else suffering from anything similar - just means i cant lift my arms as far as i would like to or put them over my head. I have been doing various stretching exercises and have hydro in the next week or so.
naila_007
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Intrauterine System (IUS) birth control and hypothyroid
Hi all, I wondered if anyone had any good info on or experience of hypothyroidism and the intrauterine system / IUS method of birth control? In particular does progestogen interact with levothyroxine at all? Iāve been taking the combi pill for many years but have come off it partially because of the
Hi all, I wondered if anyone had any good info on or experience of hypothyroidism and the intrauterine system / IUS method of birth control? In particular does progestogen interact with levothyroxine at all? Iāve been taking the combi pill for many years but have come off it partially because of the
hjh88
in
Thyroid UK
6 years ago
Systemic Sclerosis Scleroderma ...AM I like the only one with this Night mare.. and no cure. Help I feel tormented by Everyone ...
I have
Systemic
Sclerosis
Scleroderma... My vocal cords are on fire .... My Esophagual spasms R Worse... I can't eat ... On the ( Boost diet) **YES I am Extremely stressed** .. can only slept sitting up...I have very sensitive hearing ... (Sleep w/ear plugs)...
I have
Systemic
Sclerosis
Scleroderma... My vocal cords are on fire .... My Esophagual spasms R Worse... I can't eat ... On the ( Boost diet) **YES I am Extremely stressed** .. can only slept sitting up...I have very sensitive hearing ... (Sleep w/ear plugs)...
8whitetoes
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Scleraderma / HHT
Has anybody been diagnosed with
systemic
sclerosis
,scleraderma and HHT, hereditary hemorrhagic telangiectasia? The reason I'm asking is its possible that I have both these diseases, I'm currently awaiting for an appointment for a brain scan for Avm.s.
Has anybody been diagnosed with
systemic
sclerosis
,scleraderma and HHT, hereditary hemorrhagic telangiectasia? The reason I'm asking is its possible that I have both these diseases, I'm currently awaiting for an appointment for a brain scan for Avm.s.
Joanne_Evans030365
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Systemic sclerosis and hypotension
Does anyone suffer from hypotension (low blood pressure) with
systemic
sclerosis
?
Does anyone suffer from hypotension (low blood pressure) with
systemic
sclerosis
?
Sylviaherring
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Does PCOS get worse?
Does PCOS get worse? Iāve been diagnosed for a year and a half - give or take. Since coming off the hormonal coil Iāve had periods, sometimes Iād be late for a couple of weeks, which gives false hope of pregnancy... the last month or so Iāve seen more and more hair fall out and a couple of black hairs
Does PCOS get worse? Iāve been diagnosed for a year and a half - give or take. Since coming off the hormonal coil Iāve had periods, sometimes Iād be late for a couple of weeks, which gives false hope of pregnancy... the last month or so Iāve seen more and more hair fall out and a couple of black hairs
Kenmia92
in
PCOS UK (Verity)
6 years ago
Hydroxychloroqine Sulfate Quinoric
I don't know whether this drug will help my
systemic
sclerosis
but at least I have the chance to find out now. Thank you guys.
I don't know whether this drug will help my
systemic
sclerosis
but at least I have the chance to find out now. Thank you guys.
AJOC4
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Systemic Sclerosis - Pain in arms and groin
Hello everyone! This is my first post - I'm just wondering if anyone else gets pain in their shoulders or groin area at all with their condition? I find the pain in the shoulders is when I wake up some days and the groin is after I've been walking for long periods of time. Do you think this is tendon
Hello everyone! This is my first post - I'm just wondering if anyone else gets pain in their shoulders or groin area at all with their condition? I find the pain in the shoulders is when I wake up some days and the groin is after I've been walking for long periods of time. Do you think this is tendon
SarahJane926
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Charity systemic sclerosis
As some of you know I ran London marathon 5 weeks ago after being diagnosed with
systemic
sclerosis
and secondary raynauds in December. I am thinking of trying to complete an ultra marathon next year which is 62 miles from London to Brighton.
As some of you know I ran London marathon 5 weeks ago after being diagnosed with
systemic
sclerosis
and secondary raynauds in December. I am thinking of trying to complete an ultra marathon next year which is 62 miles from London to Brighton.
Sylviaherring
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Improve your condition
I was diagnosed with scleroderma about 3 years ago and also have limited cutaneous
systemic
sclerosis
, Raynaudās phenomenon, gastro-oesophageal reflux and lung fibrosis.
I was diagnosed with scleroderma about 3 years ago and also have limited cutaneous
systemic
sclerosis
, Raynaudās phenomenon, gastro-oesophageal reflux and lung fibrosis.
NSV69
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Systemic sclerosis and joint pain
Hi lovelies! Quick question. Last night I got woken with a in my knee. My leg was bent while sleeping and I tried to straighten it but it was locked in place and the pain woke me. After a minute it unlocked and o could straighten it again and the pain went once it was straight. Happen to anyone else
Hi lovelies! Quick question. Last night I got woken with a in my knee. My leg was bent while sleeping and I tried to straighten it but it was locked in place and the pain woke me. After a minute it unlocked and o could straighten it again and the pain went once it was straight. Happen to anyone else
Sylviaherring
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Upset :(
I went for an informal visit just to observe the work involved, I witnessed some small fiddly tasks and decided I had better disclose my
systemic
sclerosis
as it has slightly affected my grip.
I went for an informal visit just to observe the work involved, I witnessed some small fiddly tasks and decided I had better disclose my
systemic
sclerosis
as it has slightly affected my grip.
SarahJane926
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Broken bones, vertebrae, loss of calcium
She has positive scleroderma and
systemic
sclerosis
. She is suffering from terrible pains and she is using only vitamin D- calcium and analgetics. I hope someone will help. Thank you.
She has positive scleroderma and
systemic
sclerosis
. She is suffering from terrible pains and she is using only vitamin D- calcium and analgetics. I hope someone will help. Thank you.
nataly2237
in
Bone Health and Osteoporosis UK
6 years ago
Kenalog and Hydroxychloroquine.
I was diagnosed with
Systemic
Sclerosis
eventually 3 years ago after having had the symptoms for over 10 years. Started on Kenalog injections which relieved the pain in my feet, stiffness in limbs, aching joints and tightness in my face almost straightaway but wears off after 2 months.
I was diagnosed with
Systemic
Sclerosis
eventually 3 years ago after having had the symptoms for over 10 years. Started on Kenalog injections which relieved the pain in my feet, stiffness in limbs, aching joints and tightness in my face almost straightaway but wears off after 2 months.
AJOC4
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Reasons why drugs wonāt work for Raynauds?
I have secondary Raynauds and
Systemic
Sclerosis
. I donāt know if anyone can answer my question, but does anyone know why medication wouldnāt work for Raynauds? Iāve tried Nifedipine, 75mg losartan and now Sildenafil but nothing seems to touch it and wondered why?
I have secondary Raynauds and
Systemic
Sclerosis
. I donāt know if anyone can answer my question, but does anyone know why medication wouldnāt work for Raynauds? Iāve tried Nifedipine, 75mg losartan and now Sildenafil but nothing seems to touch it and wondered why?
-missymoo
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Knew diagnosis
Hi this is my first time on any forum, ive recently been diagnosed with,
systemic
sclerosis
- probable or connective tissue disease overlap, i also suffer from Raynauds where i lost my right little finger because of it and to top it all off i suffer from severe bowel dysfunction because of this i keep
Hi this is my first time on any forum, ive recently been diagnosed with,
systemic
sclerosis
- probable or connective tissue disease overlap, i also suffer from Raynauds where i lost my right little finger because of it and to top it all off i suffer from severe bowel dysfunction because of this i keep
Cwalton83
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
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