Posts - LUPUS UK | HealthUnlocked

LUPUS UK

31,727 members • 28,087 posts

All posts for April 2023

autoimmune hearing problems

I’ve posted this on SRUK forum too. Sorry this goes on a bit. Along with my UCTD with systemic sclerosis gut problems I’ve developed, I’ve had hearing...

I’ve posted this on SRUK forum too. Sorry this goes on a bit. Along with my UCT...

Halfwayuphill

•1 year ago

11 Replies

Sudden haematomas with no reason?

Hello, Lately I started having sharp pains of a couple of seconds in my legs followed by pretty nasty bruises/haematomas. First I thought it was a bruise due...

Hello, Lately I started having sharp pains of a couple of seconds in my legs fo...

wiselyfair

•1 year ago

9 Replies

Anybody on Hydroxy and Topiramate?

Hello everyone, Sjogrens sufferer here. Rheumi prescribed hydroxy 2 months ago (2X200Mg/day). I have really struggled with it. I take Topiramate every...

Hello everyone, Sjogrens sufferer here. Rheumi prescribed hydroxy 2 months ...

ATVMWF

•1 year ago

45 Replies

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Update & advice on availability of Zentiva hydroxychloroquine

Hi all We have posted an update and some advice on the availability of the Zentiva version of hydroxychloroquine here:...

Hi all We have posted an update and some advice on the availability of the Zent...

Debbie_kinsey

Administrator•1 year ago

8 Replies

Lupus & Sjogrens skin rash

Hi, Just wondering if anyone can give some tips. I have both Lupus and Sjogrens and photosensitivity for past 7 yrs ( skin rash caused by alergic reaction to...

Hi, Just wondering if anyone can give some tips. I have both Lupus and Sjogren...

Haired

•1 year ago

17 Replies

400mg Hydroxy

my rheumy has increased my hydroxy from 200 to 400 mg. For those that have done the same how long did it take before you noticed a difference to the increased...

my rheumy has increased my hydroxy from 200 to 400 mg. For those that have done ...

lormiccro

•1 year ago

8 Replies

Latex allergy

Why can't hospitals be totally Latex free? I have had to go to uneccessary a pre assessment yesterday and next week to the OR as a day patient for a simple...

Why can't hospitals be totally Latex free? I have had to go to uneccessary a pr...

Cal66

•1 year ago

12 Replies

Extreme knee pain

hi, I am writing on behalf of my mother who is currently waiting on blood test results so she can start azathioprine, it has been over 2 weeks now and it is...

hi, I am writing on behalf of my mother who is currently waiting on blood test ...

Pinkmonkey5

•1 year ago

6 Replies

Rituximab Infusion

Hi , I had my first Rituximab infusion on 10th and then again on the 24th March. I’ve had numerous types of tablets / injections but unfortunately all had...

Hi , I had my first Rituximab infusion on 10th and then again on the 24th Mar...

jon3120

•1 year ago

3 Replies

Anyone had elbow surgery?

Hi friends, as some of you know, I’ve been diagnosed with cubital tunnel syndrome, similar to carpel tunnel but in the elbow instead of the wrist. The ulnar...

Hi friends, as some of you know, I’ve been diagnosed with cubital tunnel syndrom...

MusicalFurbaby

•1 year ago

9 Replies

I'm not going nuts!

I need advice on what I should do and hope someone can help. I was at a dr's appointment a few weeks ago where they left my notes up. It was set on the blood...

I need advice on what I should do and hope someone can help. I was at a dr's ap...

RabbitMum_1965

•1 year ago

6 Replies

PIP Review Phone Assessment

Hello lovely people, PIP finally got in touch with me to say they wanted to arrange an assessment. They offered an in person one first thing in the morning,...

Hello lovely people, PIP finally got in touch with me to say they wanted to arr...

LilyMistri2

•1 year ago

14 Replies

SLE Lupus and supplements

Hi, just wondering what supplements people take when have SLE Lupus? Because of the affects on my liver and kidneys, I am taking the following: fish oil,...

Hi, just wondering what supplements people take when have SLE Lupus? Because of ...

Jazzy_in_Tas

•1 year ago

6 Replies

I’m sorry if this offends anyone

I’m so sorry if this offends anyone but it made me smile as it’s how my so called friends have made me feel lately. I have certainly found out who my real...

I’m so sorry if this offends anyone but it made me smile as it’s how my so calle...

MoominMomma

•1 year ago

16 Replies

Rituximab. V benlysta

Hi everyone Hoping to get some advice from this amazing group. So, I've been on benysta for about a year and though its helped I still have a lot of fatigue...

Hi everyone Hoping to get some advice from this amazing group. So, I've been ...

Literatureteacher

•1 year ago

5 Replies

Advice on explaining lupus & scleroderma to my grandson

The time has come for me to tell my 11 year old grandson about my health issues as we’ve always said that ‘nanna’s body doesn’t quite work properly!’ He’s such...

The time has come for me to tell my 11 year old grandson about my health issues ...

MoominMomma

•1 year ago

5 Replies

Rituximab infusion - side effects?!

Hi everyone, I am awaiting a rituximab infusion and i was just wondering how anyone whos had it reacted? How did you feel the next couple of days after? I am...

Hi everyone, I am awaiting a rituximab infusion and i was just wondering how an...

nada28

•1 year ago

17 Replies

Help please

Dear readers Has anyone on this forum experienced years of symptoms before being diagnosed with lupus please? If so what were your symptoms? I’ve been unwell...

Dear readers Has anyone on this forum experienced years of symptoms before bein...

fish47

•1 year ago

35 Replies

Alternative to azathioprine

Just wondering if anyone has had to stop taking azathioprine. What was the alternative you were given. Thanks

Just wondering if anyone has had to stop taking azathioprine. What was the alte...

Lioness42

•1 year ago

8 Replies

Photosensitivity: “Blue/white LED lighting harms humans & wildlife…” Eclipse article p38, Spring 2023 Lupus UK magazine.

Hi there, As a lupus sufferer with light sensitivity I found this article most interesting. Sadly the old warmer, tungsten filament lamps seem to be a thing...

Hi there, As a lupus sufferer with light sensitivity I found this article most ...

Suvi8901

•1 year ago

6 Replies

Injectable Methotrexate

Hi folks 🤗I've been struggling with lupus symptoms since I had Covid in October last year. I've had an appt with my rheumy who has advised an increase in...

Hi folks 🤗I've been struggling with lupus symptoms since I had Covid in October...

Krazykat26

•1 year ago

60 Replies

SPRING BOOSTER

if you log in to this it might make things clearer

AgedCrone

•1 year ago

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Low red blood cells

Hi, I have cutaneous lupus and now have low red blood cells. Please does anyone have any advice on what to eat to help my iron levels thar doesn't clash with...

Hi, I have cutaneous lupus and now have low red blood cells. Please does anyone ...

Hidden

•1 year ago

1 Reply

Red circular patches popping up ...any thoughts

I have several of these red circular patches appear on my thighs,abdomen and forearms recently.slightly raised and abit dry/flaky and they don't itch .been...

I have several of these red circular patches appear on my thighs,abdomen and for...

Spanielmadlady

•1 year ago

15 Replies

Flare up

Hi, I have had lupus for 7 years now and feel I've been very lucky as meds have controlled it really well , until now. I have continued to go on holiday and...

Hi, I have had lupus for 7 years now and feel I've been very lucky as meds have ...

Waxed

•1 year ago

1 Reply

Low white cells

Hi everyone Hope you're all doing ok. Just wanted to ask if anyone has experienced low white blood cell due to azathioprine. I have sle and have been on these...

Hi everyone Hope you're all doing ok. Just wanted to ask if anyone has experienc...

Lioness42

•1 year ago

6 Replies

Waiting on Rheumatologist....

My GP told me in October, 7 months ago my bloods showed lupus and Sjorgens and he referred me to a rheumatologist. I have had different things wrong with me...

My GP told me in October, 7 months ago my bloods showed lupus and Sjorgens and h...

Alidoll66

•1 year ago

9 Replies

Spring Covid booster - no longer on the list

Hi all, I wonder if anyone else has had this experience. I've always been on the CEV list and eligible for boosters. However, my GP surgery are telling me I...

Hi all, I wonder if anyone else has had this experience. I've always been on ...

Treetop33

•1 year ago

47 Replies

anti-Ku antibody and UCTD

Hi folks, I hope you are enjoying some spring weather where you live. Does anyone else have a positive anti-Ku antibody? I also have anti-smooth muscle...

Hi folks, I hope you are enjoying some spring weather where you live. Does an...

redmaggie

•1 year ago

2 Replies

Hand issues

Hello all I've had a diagnosis of lupus for nearly three years. I tried hydroxychloroquine first and then methotrexate, but the side effects were terrible...

Hello all I've had a diagnosis of lupus for nearly three years. I tried hydrox...

Ophelia1

•1 year ago

12 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for April 2023

autoimmune hearing problems

Sudden haematomas with no reason?

Anybody on Hydroxy and Topiramate?

Update & advice on availability of Zentiva hydroxychloroquine

Lupus & Sjogrens skin rash

400mg Hydroxy

Latex allergy

Extreme knee pain

Rituximab Infusion

Anyone had elbow surgery?

I'm not going nuts!

PIP Review Phone Assessment

SLE Lupus and supplements

I’m sorry if this offends anyone

Rituximab. V benlysta

Advice on explaining lupus & scleroderma to my grandson

Rituximab infusion - side effects?!

Help please

Alternative to azathioprine

Photosensitivity: “Blue/white LED lighting harms humans & wildlife…” Eclipse article p38, Spring 2023 Lupus UK magazine.

Injectable Methotrexate

SPRING BOOSTER

Low red blood cells

Red circular patches popping up ...any thoughts

Flare up

Low white cells

Waiting on Rheumatologist....

Spring Covid booster - no longer on the list

anti-Ku antibody and UCTD

Hand issues

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