Posts - Scleroderma & Raynaud's UK (SRUK) | HealthUnlocked

Scleroderma & Raynaud's UK (SRUK)

10,886 members • 5,436 posts

All posts for May 2014

Does anyone also have skin tingling/burning with their Raynauds symptoms?

I am trying to figure out if this is a medicine side effect or what. It is hard to describe ... some might could say it was pain. Just very noticeable to me...

I am trying to figure out if this is a medicine side effect or what. It is hard...

Ema2

•10 years ago

5 Replies

I have been denied IVIG by NHS England . I have been prescribed immunosuppressant medication instead .

I feel bad on them after only three days of taking them. I am dragging myself about feeling lethargic. Dizzy: low mood: and tearful. I wonder if anybody else...

I feel bad on them after only three days of taking them. I am dragging myself a...

Hidden

•10 years ago

16 Replies

Raynaud's and Hives?

Hi I was diagnosed with Raynaud's 7 years ago and was prescribed nifidipene. I stopped taking it once my symptoms had subsided and I stopped getting the...

Hi I was diagnosed with Raynaud's 7 years ago and was prescribed nifidipene. I s...

leezals

•10 years ago

9 Replies

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Professor Chris Denton is giving a free webinar on renal complication in scleroderma today (Thursday 29th).

Professor Chris Denton is giving a free webinar on renal complication in scleroderma today (Thursday 29th). More info here...

Professor Chris Denton is giving a free webinar on renal complication in sclerod...

SRUKadmin

Partner•10 years ago

6 Replies

Gas exchange low end of normal on lung function test

I had a routine lung function test today and the technician said my gas exchange was at the lower end of normal. I recently had to have 2 lots of antibiotics...

I had a routine lung function test today and the technician said my gas exchange...

lollipop

•10 years ago

2 Replies

Blood tests have indicated that I have antibodies present that indicates scleroderma. Is it possible to have these without any symptoms?

The presence of these antibodies was discovered several years ago because I had been going to the doctors about joint stiffness. I had lots of tests in...

The presence of these antibodies was discovered several years ago because I had ...

ted5

•10 years ago

4 Replies

Does anyone have a problem with 'Jaw Ache'? I get woken in the night with a ache/pain in my left jaw. It seems to hurt more when I rest it!

I have seen the dentist & cannot find anything wrong with my teeth & is referring me to hospital for an x-ray ( 4-5 month waiting list!)

I have seen the dentist & cannot find anything wrong with my teeth & is referrin...

kris

•10 years ago

7 Replies

How often will I need iloprost infusions

I have received a letter to go for my first iloprost infusion. Once I have had this one how often can I expect to have them? I have read the posts on iloprost...

I have received a letter to go for my first iloprost infusion. Once I have had t...

Jezmin

•10 years ago

3 Replies

R.a and raynauds

I am only twenty-four but eleven years ago I was diagnosed with JIA and Fibromyalgia, which later progressed to adult Rheumatoid Arthritis. I was a sickly...

I am only twenty-four but eleven years ago I was diagnosed with JIA and Fibromya...

Kirstielogan

•10 years ago

7 Replies

Embarrassing bm issues and dont have anywhere else to ask, I take disipermine for some OCD issues related to my high functioning Autism.

The med can make me constipated and at the same time the BMs seem to not be able to form and it comes out so soft and I have to (sorry for the detail) help it...

The med can make me constipated and at the same time the BMs seem to not be able...

danacetz

•10 years ago

4 Replies

I have scleroder and reynauds waiting to see consultant for eyes as they think I might have glaucoma also have start of cateracts does

One else have this problem also have ulcer on right ankle which is agony

suehospital

•10 years ago

13 Replies

Cyclophosphamide ? I saw my rheumy today and he wants to stop my methotrexate tablets and give me Cyclo infusions. Any advice on this drug.

I have Scleroderma, Sjorgens and CTD. My joints are getting worse. I would be grateful to hear from anyone who has had these infusions, side effects and...

I have Scleroderma, Sjorgens and CTD. My joints are getting worse. I would be gr...

Helen58

•10 years ago

4 Replies

Does anyone have chronic muscle spasms/cramps?

Hi I suffer from terrible cramps in my toes and abdominal area. I take Quinine every day but it doesn't get rid or them. I am not sure if it is not working or...

Hi I suffer from terrible cramps in my toes and abdominal area. I take Quinine e...

uknlv

•10 years ago

8 Replies

I keep gettin shocks that go throughmy entire body starting from th top of my head to the tips of my toes it makes me stop im my track,

it affects every inch of me, can anybody help

seachelle

•10 years ago

4 Replies

Present BP med not working...Losartan...only see GP wonder if I should try another type. Any suggestions?

I do have Raynauds, which I think is only primary. Haven't really had any other tests.

I do have Raynauds, which I think is only primary. Haven't really had any other...

Ema2

•10 years ago

5 Replies

Is this the right site for MCTD? Does anybody else suffer from tenderness in their jaw?

I have Mixed connective tissue disease. Symptoms hard patches on fingers, arthritic joints, fatique.

I have Mixed connective tissue disease. Symptoms hard patches on fingers, arthri...

vletchworth

•10 years ago

5 Replies

Scleroderma Medicines Survey

The Scleroderma Society are collecting patient’s thoughts/experiences of their scleroderma medicines. The purpose of the survey is to provide FESCA with some...

The Scleroderma Society are collecting patient’s thoughts/experiences of their s...

SRUKadmin

Partner•10 years ago

8 Replies

Heated gloves - research and pilot testing

Hi everyone. I am conducting research into heated gloves. After my research, I will be designing heated gloves specifically for you and those who also...

Hi everyone. I am conducting research into heated gloves. After my research, ...

MadewithGlove

•10 years ago

16 Replies

does anyone with sd have bowel problems

i have crest sd, tumous calification. it is 2 inch on thigh bones and i have awlful leg pain, now im having some bowel problem. the gas dr. says i cant get all...

i have crest sd, tumous calification. it is 2 inch on thigh bones and i have awl...

bellejewel

•10 years ago

6 Replies

My hands are incredibly sore and sensitive to touch even when warm - is this normal?

I'm meant to be going back to work and I'm really worried about how I'm going to cope. Alternate fingers keep swelling up and when they do, it's incredibly...

I'm meant to be going back to work and I'm really worried about how I'm going to...

ctj_2013

•10 years ago

13 Replies

I have a sharp pain in my toes and I don't know What it is it hurts so bad do anyone know What it is.

Robin88

•10 years ago

3 Replies

Hi I'm a newbie to raynauds n lupus I'm only on aspirin my hands n feet r going numb what else can I take tried celcept but wasn't making a

woodiebyrne

•10 years ago

3 Replies

Raynaud's & Scleroderma Association HealthUnlocked Posting Guidelines - PLEASE READ

RSA Posting Guidelines – please read Raynaud’s and Scleroderma Association (RSA) is a registered charity whose work includes supporting people with...

RSA Posting Guidelines – please read Raynaud’s and Scleroderma Association (R...

SRUKadmin

Partner•10 years ago

1 Reply

My daughter 17 suffers from very cold thighs. The veins on her feet look sunken

smileysd

•10 years ago

Be the first to reply

2014 Raffle

We are delighted to be running our 2014 raffle, with the main prize being a £450 voucher for Cumbrian Cottages, amongst many other great prizes. If you would...

We are delighted to be running our 2014 raffle, with the main prize being a £450...

SRUKadmin

Partner•10 years ago

2 Replies

Natural remedy - Gamolenic Acid

Does anyone know where I can buy this on its own (i.e. not part of evening primrose etc) I am based in Dorset, UK so somewhere local or on internet would be...

Does anyone know where I can buy this on its own (i.e. not part of evening primr...

sandraj

•10 years ago

Be the first to reply

Nailfold capillary test

Do Rheumatologists do this as a routine test with Raynauds symptoms? Of course I am in the US. Anyone on here from US?

Do Rheumatologists do this as a routine test with Raynauds symptoms? Of course ...

Ema2

•10 years ago

7 Replies

Is anybody else troubled by sore mouth/tongue and loss of taste?

I have Raynauds and Scleroderma and just recently have been troubled by altered sensation in my mouth. It feels as if I have scalded my mouth (which I haven't)...

I have Raynauds and Scleroderma and just recently have been troubled by altered ...

nannysue1950

•10 years ago

9 Replies

I have been itching from head to toe now for 3 days my fingers are swollen big. itching and hurting

lame99

•10 years ago

4 Replies

hi just wondered if there is anyone on the drug hydroroxychloriquin (plaquil) im not sure if spellings are correct

I would like to know how it reacts with different people. iv been told id benefit from using it but I am afraid to start it because of the side effects with ur...

I would like to know how it reacts with different people. iv been told id benefi...

fruitpastle

•10 years ago

14 Replies

Posts - Scleroderma & Raynaud's UK (SRUK) | HealthUnlocked

Scleroderma & Raynaud's UK (SRUK)

All posts for May 2014

Does anyone also have skin tingling/burning with their Raynauds symptoms?

I have been denied IVIG by NHS England . I have been prescribed immunosuppressant medication instead .

Raynaud's and Hives?

Professor Chris Denton is giving a free webinar on renal complication in scleroderma today (Thursday 29th).

Gas exchange low end of normal on lung function test

Blood tests have indicated that I have antibodies present that indicates scleroderma. Is it possible to have these without any symptoms?

Does anyone have a problem with 'Jaw Ache'? I get woken in the night with a ache/pain in my left jaw. It seems to hurt more when I rest it!

How often will I need iloprost infusions

R.a and raynauds

Embarrassing bm issues and dont have anywhere else to ask, I take disipermine for some OCD issues related to my high functioning Autism.

I have scleroder and reynauds waiting to see consultant for eyes as they think I might have glaucoma also have start of cateracts does

Cyclophosphamide ? I saw my rheumy today and he wants to stop my methotrexate tablets and give me Cyclo infusions. Any advice on this drug.

Does anyone have chronic muscle spasms/cramps?

I keep gettin shocks that go throughmy entire body starting from th top of my head to the tips of my toes it makes me stop im my track,

Present BP med not working...Losartan...only see GP wonder if I should try another type. Any suggestions?

Is this the right site for MCTD? Does anybody else suffer from tenderness in their jaw?

Scleroderma Medicines Survey

Heated gloves - research and pilot testing

does anyone with sd have bowel problems

My hands are incredibly sore and sensitive to touch even when warm - is this normal?

I have a sharp pain in my toes and I don't know What it is it hurts so bad do anyone know What it is.

Hi I'm a newbie to raynauds n lupus I'm only on aspirin my hands n feet r going numb what else can I take tried celcept but wasn't making a

Raynaud's & Scleroderma Association HealthUnlocked Posting Guidelines - PLEASE READ

My daughter 17 suffers from very cold thighs. The veins on her feet look sunken

2014 Raffle

Natural remedy - Gamolenic Acid

Nailfold capillary test

Is anybody else troubled by sore mouth/tongue and loss of taste?

I have been itching from head to toe now for 3 days my fingers are swollen big. itching and hurting

hi just wondered if there is anyone on the drug hydroroxychloriquin (plaquil) im not sure if spellings are correct

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