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

Scleroderma & Raynaud's UK (SRUK)

11,113 members•5,638 posts

All posts for January 2020

Raynaud's and cannabis

I've been using high grade cannabis flower for 30 years to take the edge of my Raynaud's and it's the only treatment that works for me, any medical treatment...

I've been using high grade cannabis flower for 30 years to take the edge of my R...

kennethmurray

•5 years ago

4 Replies

Carvedilol

Does anyone taking Carvedilol find it makes Raynaud's worse? Thanks

foxglove

•5 years ago

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RITUXIMAB FOR SYSTEMIC SCLEROSIS?

Hi, My consultant has stated that cyclophosphamide is the only treatment left available to me as I'm on highest dose of mycophenolate and it has kinda done all...

Hi, My consultant has stated that cyclophosphamide is the only treatment left av...

momo17

•5 years ago

19 Replies

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Coming off PPIs for endoscopy

I've was diagnosed with limited systemic sclerosis 5 years ago although I've had symptoms for a lot longer, including reflux for 30 years and swallowing...

I've was diagnosed with limited systemic sclerosis 5 years ago although I've had...

cowhide

•5 years ago

4 Replies

My life with primary Raynaud'sCold hands

Hi everyone today in Scotland it's very cold iv just walked to the shop and bk that took me 5 minutes and iv lost all feeling on both hands I will post some...

Hi everyone today in Scotland it's very cold iv just walked to the shop and bk t...

Queenana

•5 years ago

8 Replies

SIBO and seeing a Functional Medicine Practitioner

I’ve posted this on the Lupus forum as I have UCTD with Scleroderma symptoms but thought may be appropriate here too. I have posted before about SIBO and how...

I’ve posted this on the Lupus forum as I have UCTD with Scleroderma symptoms but...

Halfwayuphill

•5 years ago

8 Replies

Renal decline questions? Unsure if I’m getting the best advice

Hi there, me again, apologies! Diagnosed with limited cutaneous systemic sclerosis in 2017 secondary Raynauds started 15 years ago. Severe Raynauds, recent GI...

Hi there, me again, apologies! Diagnosed with limited cutaneous systemic scleros...

-missymoo

•5 years ago

10 Replies

Azathioprine as preventive measure for 20 year stable lung fibrosis in SS??

I stopped immunosuppression 2001 and have no progression of my pulmonary fibrosis at all. Now my new doc wants to put me back on a low dose of azathioprine as...

I stopped immunosuppression 2001 and have no progression of my pulmonary fibrosi...

Sootie1

•5 years ago

1 Reply

No fingerprints

Hi / I have just returned from a visit to USA and it was interesting that on this occasion when going through screening they could not get finger and thumb...

Hi / I have just returned from a visit to USA and it was interesting that on thi...

creditcrunchie

•5 years ago

8 Replies

Mitigating Raynaud's: copper gloves any good?

Hi, I am new here. One-use chemical heat packs help keep my fingers warm when I am out in the cold, but I don't like cost and enviro impacts. Was wondering if...

Hi, I am new here. One-use chemical heat packs help keep my fingers warm when I ...

RayStarAl

•5 years ago

5 Replies

Vascular bypass

Hello, I have Raynaud’s disease and systemic sclerosis. I have a blood clot in my right leg and am about to have a vascular bypass to try and resolve it. Has...

Hello, I have Raynaud’s disease and systemic sclerosis. I have a blood clot in m...

Thomson24

•5 years ago

4 Replies

Living with primary Raynaud's

Sometimes I get bad white finger when I come out a hot bath also I can get it with just the thought of cold .

Sometimes I get bad white finger when I come out a hot bath also I can get it wi...

Queenana

•5 years ago

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My life with primary Raynaud's

Hi everyone iv had primary Raynaud's for over 20 year now and I used to be so embarrassed to tell anyone now that I'm older I don't mind talking about it I...

Hi everyone iv had primary Raynaud's for over 20 year now and I used to be so em...

Queenana

•5 years ago

3 Replies

infected contact dermatitis

Hi all, Has anyone else had infected dermatitis as a raynaurd's sufferer? I am struggling because my hands are even more hot at night than they usually are. Gp...

Hi all, Has anyone else had infected dermatitis as a raynaurd's sufferer? I am s...

Blue_feather

•5 years ago

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Ineffective oesophageal motility and excessive reflux questions

Hi all, Diagnosed with limited cutaneous systemic sclerosis and secondary Raynauds in 2017 with worsening GI issues and potential Kidney problems. I recently...

Hi all, Diagnosed with limited cutaneous systemic sclerosis and secondary Raynau...

-missymoo

•5 years ago

14 Replies

Swim socks

Does anyone know of any good waterproof socks I could use for swimming. I work in a special needs school and have to go swimming with the kids but the pool is...

Does anyone know of any good waterproof socks I could use for swimming. I work i...

kes07

•5 years ago

4 Replies

Scleraderma....stomach pains - bacterial overgrowth.

Hi. Just thought I would let you know I have been having excruciating stomach pains for 18 months. The gastro-enterologist said it was overgrowth of bacteria...

Hi. Just thought I would let you know I have been having excruciating stomach p...

Denton1

•5 years ago

6 Replies

Newly diagnosed

Hi had white fingers for years but recently been worse and turning black only affecting one side, I also have hand arthritis, fingers are getting worse have no...

Hi had white fingers for years but recently been worse and turning black only af...

Sixtiesmod

•5 years ago

2 Replies

Nonpharmacologic measures before Nifedipine

My Raynaud’s has worsened suddenly. Assuming it is Raynaud’s that is. It was first ‘diagnosed’ 2 years ago with no testing or investigation, just based on me...

My Raynaud’s has worsened suddenly. Assuming it is Raynaud’s that is. It was fir...

Kernowall

•5 years ago

19 Replies

Informal chilled out meeting 23.02.20

We have a date and venue for our next meeting in Birmingham. It's on Sunday 23rd February 2020 at 11.30am. It'll be in the restaurant of John Lewis, 2 Station...

We have a date and venue for our next meeting in Birmingham. It's on Sunday 23rd...

avtargill31

•5 years ago

3 Replies

Neutropenia

I recently had to stop Cellcept as I became severely neutropenic and was admitted to hospital. My neutrophils are up and down, despite Neupogen injections,...

I recently had to stop Cellcept as I became severely neutropenic and was admitte...

UCTD

•5 years ago

9 Replies

Level of Iloprost Infusion required to be effective

I had Iloprost in October as day patient. The main level tolerated was 3. When I saw the consultant two weeks later he told me it hadn't worked as not...

I had Iloprost in October as day patient. The main level tolerated was 3. When ...

Slinky72

•5 years ago

8 Replies

Reynauds causing corns and calluses NHS

Can anyone enlighten me and whether Reynauds can the the underlying cause of corns and calluses and wither podiatry treatment should be on the NHS if so? I am...

Can anyone enlighten me and whether Reynauds can the the underlying cause of cor...

Kernowall

•5 years ago

5 Replies

Helpful maybe?

For a while now I have struggled with getting the trolley token out of the trolley without removing my gloves, but the other week I thought of an idea to help...

For a while now I have struggled with getting the trolley token out of the troll...

kes07

•5 years ago

6 Replies

Newly diagnosed

Hi there, I have been a lurker for a while and decided to come out of my cupboard. I am just coming down from the roller coaster of diagnosis of limited...

Hi there, I have been a lurker for a while and decided to come out of my cupboar...

marbelina

•5 years ago

14 Replies

Hydroxychloroquine

Since starting taking this 3 wks ago I have a really sore throat my glands are swollen and I’ve had an upset stomach. My blood pressure has been up and gp...

Since starting taking this 3 wks ago I have a really sore throat my glands are s...

Ncoff

•5 years ago

3 Replies

Ranitidine

Hi all I have been taking 300mg Ranitidine every night in addition to Esameprazole and have the head of my bed up on wooden blocks. I eat carefully as well...

Hi all I have been taking 300mg Ranitidine every night in addition to Esameprazo...

VanessaJoanne

•5 years ago

8 Replies

Sildenafil

Is anyone else having difficulty getting Sildenafil?

tredgirl

•5 years ago

3 Replies

Do I accept this is only Primary Raynauds?

Struggling to accept diagnosis is only ‘likely raynauds’. My feet don’t bother me however my arms legs and hands look and feel dead.. they ache and they burn...

Struggling to accept diagnosis is only ‘likely raynauds’. My feet don’t bother m...

Abrobo69

•5 years ago

2 Replies

Excessive Hairfall with Folitrax 7.5

Hi Friends... I am currently on folitrax 7.5 once a week for limited scleroderma and i am experiencing excessive hairfall which concerns me a lot... i am 35...

Hi Friends... I am currently on folitrax 7.5 once a week for limited scleroderma...

anybody12345

•5 years ago

3 Replies

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

Scleroderma & Raynaud's UK (SRUK)

All posts for January 2020

Raynaud's and cannabis

Carvedilol

RITUXIMAB FOR SYSTEMIC SCLEROSIS?

Coming off PPIs for endoscopy

My life with primary Raynaud'sCold hands

SIBO and seeing a Functional Medicine Practitioner

Renal decline questions? Unsure if I’m getting the best advice

Azathioprine as preventive measure for 20 year stable lung fibrosis in SS??

No fingerprints

Mitigating Raynaud's: copper gloves any good?

Vascular bypass

Living with primary Raynaud's

My life with primary Raynaud's

infected contact dermatitis

Ineffective oesophageal motility and excessive reflux questions

Swim socks

Scleraderma....stomach pains - bacterial overgrowth.

Newly diagnosed

Nonpharmacologic measures before Nifedipine

Informal chilled out meeting 23.02.20

Neutropenia

Level of Iloprost Infusion required to be effective

Reynauds causing corns and calluses NHS

Helpful maybe?

Newly diagnosed

Hydroxychloroquine

Ranitidine

Sildenafil

Do I accept this is only Primary Raynauds?

Excessive Hairfall with Folitrax 7.5

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