Posts - LUPUS UK | HealthUnlocked

LUPUS UK

31,744 members • 28,102 posts

All posts for June 2021

Have you been treated with anifrolumab (as part of the TULIP clinical trials)? Please contact LUPUS UK.

Hi everyone, NICE is beginning the appraisal process to decide whether a new lupus treatment, anifrolumab, should be approved for use by NHS England. You can...

Hi everyone, NICE is beginning the appraisal process to decide whether a new lup...

Paul_Howard

Partner•3 years ago

1 Reply

Hi, just a quick update

Thanks to everyone that has been in touch regarding my last post. I am getting plenty of rest, and slowly getting used to my new way of life.

Thanks to everyone that has been in touch regarding my last post. I am getting ...

Bronn

•3 years ago

4 Replies

Can anyone help with these blood names?

Hi all, I’m just back from rheum and he wants me to have some bloods. Please can anyone decipher this handwriting? As I have to ring my GP tomorrow to see if...

Hi all, I’m just back from rheum and he wants me to have some bloods. Please can...

TeaandToast94

•3 years ago

5 Replies

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Kidney Biopsy

My consultant called today with Kidney biopsy results to tell me they didn't get enough as the procedure had to be stopped due to a bleed. So I need to have...

My consultant called today with Kidney biopsy results to tell me they didn't get...

Zeberdee1

•3 years ago

6 Replies

Jury service exemption?

I have just had a letter calling me up for jury service smack bang in the middle of the six weeks holidays. I'm already extremely fatigued and im hanging on...

I have just had a letter calling me up for jury service smack bang in the middle...

F1zz

•3 years ago

5 Replies

Exercise and Lupus?

Hi everyone, I’m 21 years old and i’ve been diagnosed with lupus and APS for two years now, it’s been a really rough journey and this past year i’ve been...

Hi everyone, I’m 21 years old and i’ve been diagnosed with lupus and APS for two...

lupeylady

•3 years ago

30 Replies

Has Azathioprine helped?

Has anyone noticed a change in their painful joints after starting Azathioprine, and how long did it take.

Has anyone noticed a change in their painful joints after starting Azathioprine,...

rubybelle12

•3 years ago

2 Replies

Why won’t my GP prescribe lupus drug treatment?

Hi, I have lots of lupus symptoms dismissed by a useless rheumatologist who didn’t understand the word I was saying, I have been having a very bad flare with...

Hi, I have lots of lupus symptoms dismissed by a useless rheumatologist who didn...

Buffer

•3 years ago

8 Replies

Splinter hemorages

I have noticed since I ve had my second vaccine I have a lot of splinter hemorages on my finger nails has anyone else had this

I have noticed since I ve had my second vaccine I have a lot of splinter hemorag...

clova

•3 years ago

2 Replies

Eyelashes falling out?

Hi, Does anyone with SLE and/or Sjorgren’s have issues with their eyelashes falling out? I have SLE and Pernicious Anemia and I am starting to suspect...

Hi, Does anyone with SLE and/or Sjorgren’s have issues with their eyelashes fal...

Spandau

•3 years ago

6 Replies

I have symptoms of lupus but nothing showing on blood tests, at the end of my tether!! Rash, fatigue,hair loss,swollen lymph nodes in neck

Muscle and joint pain, react to the sun with it itchy rashes, antihistamines don’t help, ulcers in nose and mouth, I feel no one is listening neither...

Muscle and joint pain, react to the sun with it itchy rashes, antihistamines don...

Loulou1972

•3 years ago

6 Replies

Mobility issues, feeling hopeless

Hi everyone, I’ve been struggling since last year with my mobility and it keeps getting worse, especially with shielding I feel like now when I try and leave...

Hi everyone, I’ve been struggling since last year with my mobility and it keeps...

Leenie0811

•3 years ago

25 Replies

Swollen gut lymph nodes in Lupus or long-term infection?

Hi everyone, I'm on a journey of figuring out what's happening in my body. The latest information I have been given is that nothing was found in a CT scan but...

Hi everyone, I'm on a journey of figuring out what's happening in my body. The ...

LPLx

•3 years ago

4 Replies

A light hearted article with a serious last line....

You could just cut to the chase if you wanted. I read it all....

WinterSwimmer

•3 years ago

3 Replies

Serious sign but it made me chuckle

Although it is many years since I photographed this notice on Port Macquarie beach in New South Wales, it always comes to mind when I see litter strewn on our...

Although it is many years since I photographed this notice on Port Macquarie bea...

Spotty-ewe

•3 years ago

20 Replies

Rash from clothing

Does anyone else get rashes from certain materials? Is there a work around? My work uniform brings me up in the worst rash ever hindering my sleep 🤦🏾‍♀️

Does anyone else get rashes from certain materials? Is there a work around? My w...

Simply_Kea

•3 years ago

17 Replies

Puppy cuteness

Hope this little face cheers everybody up to day. He’s a French bulldog that belongs to my son snd the children are smothering it with love 😜

Hope this little face cheers everybody up to day. He’s a French bulldog that bel...

Hidden

•3 years ago

14 Replies

Anyone had their bathroom adapted by the council to suit their disability?

Hi All, I’m at the end of my wit dealing with the council. I was moved into my council flat when the bedroom tax debacle happened and I had to leave my private...

Hi All, I’m at the end of my wit dealing with the council. I was moved into my c...

LilyMistri2

•3 years ago

10 Replies

When you started hydroxychloroquine did you feel sleepy?!

I’ve read that hydroxychloroquine is great for fatigue but currently it’s causing me more fatigue! I’ve only been on it for 2 weeks. About 30 minutes after...

I’ve read that hydroxychloroquine is great for fatigue but currently it’s causin...

SRiley

•3 years ago

2 Replies

For Stormy, Horsewhisper and all those who need cheering up.

Stormy has asked me to tell everybody on the forum how much she misses you all and misses being on the forum herself, but she sends you all her love. She is...

Stormy has asked me to tell everybody on the forum how much she misses you all a...

Spotty-ewe

•3 years ago

41 Replies

Provisional Driving License

Hi, I just brought my provisional driving licence online and under health condition/disability it does not mention Lupus as a health condition. Do I need to...

Hi, I just brought my provisional driving licence online and under health condi...

SLE-Warrior

•3 years ago

9 Replies

Bone medication

I have been taking Ibandronic acid for a few years now for brittle bones due to years of Lupus meds. Recently my new dentist made a point of saying that they...

I have been taking Ibandronic acid for a few years now for brittle bones due to ...

DaisyMeadows

•3 years ago

10 Replies

Discoid rash

Hi all Apart from the malar rash and the usual with sun exposure, I’ve been quite fortunate with not having many skin complaints. This morning I noticed a...

Hi all Apart from the malar rash and the usual with sun exposure, I’ve been quit...

TeaandToast94

•3 years ago

5 Replies

Horsey Tales.

Hello everyone This week's pic is of a Clydesdale foal called Rowan in Scotland. This breed is on the 'at risk' register so this youngster is particularly...

Hello everyone This week's pic is of a Clydesdale foal called Rowan in Scotland...

misty14

•3 years ago

58 Replies

Amlodipine and itching

Anyone else suffered from bad itching taking amlodipine? Just three weeks in and have ringing ears, eye flashes (had checked by optometrist) and now horrible...

Anyone else suffered from bad itching taking amlodipine? Just three weeks in and...

Victoriaplums

•3 years ago

Be the first to reply

Raynards??

I was walking round a lake yesterday and looked at my hands and my finger tips were like this... really strange as they were not cold? Just a little tingly...

I was walking round a lake yesterday and looked at my hands and my finger tips w...

BabyOleg

•3 years ago

6 Replies

Spot the cheeky Heron?

Hello everyone, I thought you might like these photos of the heron casting his eye over the goslings in our garden. My husband runs out and shouts at him to...

Hello everyone, I thought you might like these photos of the heron casting his e...

Horsewhisper

•3 years ago

46 Replies

Scared to start Leflunomide

Is anyone on or taking Leflunomide? My rheumatologist has been advocating for it for over a year and given my Lupus raging worse than ever - it’s out of...

Is anyone on or taking Leflunomide? My rheumatologist has been advocating for it...

katidid

•3 years ago

3 Replies

☢️ headache update- 🤷‍♀️/Vaccine reaction?

Happy Friday!!🎉🎉🎉💃🏻💃🏻💃🏻🕺🕺🕺 It has now been 15 days since this headache started. I have been on Prednisone for 8 days. Tomorrow is my last...

Happy Friday!!🎉🎉🎉💃🏻💃🏻💃🏻🕺🕺🕺 It has now been 15 days since this heada...

DRunnerchick

•3 years ago

30 Replies

Lupus UK Grand Draw - Bank transfer?

Just checking if there is a way to pay by BACS for the prize draw tickets this year. I think I did that last time?

Just checking if there is a way to pay by BACS for the prize draw tickets this y...

Redfox25

•3 years ago

2 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for June 2021

Have you been treated with anifrolumab (as part of the TULIP clinical trials)? Please contact LUPUS UK.

Hi, just a quick update

Can anyone help with these blood names?

Kidney Biopsy

Jury service exemption?

Exercise and Lupus?

Has Azathioprine helped?

Why won’t my GP prescribe lupus drug treatment?

Splinter hemorages

Eyelashes falling out?

I have symptoms of lupus but nothing showing on blood tests, at the end of my tether!! Rash, fatigue,hair loss,swollen lymph nodes in neck

Mobility issues, feeling hopeless

Swollen gut lymph nodes in Lupus or long-term infection?

A light hearted article with a serious last line....

Serious sign but it made me chuckle

Rash from clothing

Puppy cuteness

Anyone had their bathroom adapted by the council to suit their disability?

When you started hydroxychloroquine did you feel sleepy?!

For Stormy, Horsewhisper and all those who need cheering up.

Provisional Driving License

Bone medication

Discoid rash

Horsey Tales.

Amlodipine and itching

Raynards??

Spot the cheeky Heron?

Scared to start Leflunomide

☢️ headache update- 🤷‍♀️/Vaccine reaction?

Lupus UK Grand Draw - Bank transfer?

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