Posts - LUPUS UK | HealthUnlocked

LUPUS UK

31,744 members • 28,102 posts

All posts for May 2020

Two months later, received a letter, but not 'the letter' - Confused?

Afternoon all, hope you're doing ok :) So this morning I received this letter from the Healthboard. I'm confused for a couple of reasons. 1. It's two months...

Afternoon all, hope you're doing ok :) So this morning I received this letter fr...

Ceri-NorthWales

•4 years ago

9 Replies

Bloods

Hi all, My bloods came back as normal for rheumatoid and the doc is referring me to check for lupus as I didn’t haven’t the ANA one. Can I just ask does...

Hi all, My bloods came back as normal for rheumatoid and the doc is referring m...

Alisbabas

•4 years ago

2 Replies

Calligraphy, an art in writing📜🖋🖊

Hi all, As so many of you have been inspiring me in the arts. You all do such amazing works. I truly mean this from the heart. I have began to work again. This...

Hi all, As so many of you have been inspiring me in the arts. You all do such am...

thestorm

•4 years ago

5 Replies

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Lower Body Temperature

Hi all Does anyone know if Lupus causes low body temperature? After a bad bout of gastroenteritis in April 2019 the doctor said it would be a good idea to...

Hi all Does anyone know if Lupus causes low body temperature? After a bad bout...

Froggie70

•4 years ago

36 Replies

Can someone please take a look at my skin after being in this lovely sun, and advise?

Please can someone take a look at my pic please and advise. My skin seems to be reacting to the sun, does this look right for lupus? I wanted to add more...

Please can someone take a look at my pic please and advise. My skin seems to be ...

Charlees

•4 years ago

5 Replies

Sore nipples

Sorry didn't know what else to put 😁 Has anyone else had sore nipples? I have SLE on hydroxycloriquine and for the last 3wks I have sore nipples continuously....

Sorry didn't know what else to put 😁 Has anyone else had sore nipples? I have S...

Hidden

•4 years ago

8 Replies

COVID-19 and UK Hydroxychloroquine Supply (UPDATED 20/05/2020)

Hi everyone, We've received some enquiries and concerns about the supply of hydroxychloroquine again following US President Donald Trump's remarks yesterday....

Hi everyone, We've received some enquiries and concerns about the supply of hydr...

Paul_Howard

Partner•4 years ago

30 Replies

Weight gain

Lots weight gain on steroids but not any improvement , the ck inflammation of the muscles still very high, I had some tests to do on nerves function etc but...

Lots weight gain on steroids but not any improvement , the ck inflammation of th...

Melaxx

•4 years ago

1 Reply

Feeling Deflated

My 15 year old daughter has been doing so well on her medication, her brain activity is back to normal and she seems her old self again but yesterday (at what...

My 15 year old daughter has been doing so well on her medication, her brain acti...

chezevo

•4 years ago

3 Replies

For The Storm

My babies Brodie and Dylan. Dylan has a rare liver condition which has sent him blind and last year he had both inner ears removed so he has ear flaps but...

My babies Brodie and Dylan. Dylan has a rare liver condition which has sent him ...

CecilyParsley

•4 years ago

20 Replies

Butterfly rash

Dear all. I hope the hot weather forecasted won’t be to uncomfortable for any people struggling with lupus. Any advice as to whether this photo could be a...

Dear all. I hope the hot weather forecasted won’t be to uncomfortable for any p...

Gagbuni

•4 years ago

2 Replies

Random Acts Of Kindness - Received Heartwarming Annonymous Post Today

I received this in the post today and I am so taken aback for this act of kindness. It was sent annonymously and personally addressed to me. I don't know who...

I received this in the post today and I am so taken aback for this act of kindne...

Ceri-NorthWales

•4 years ago

11 Replies

'This Morning' discussing Trump taking HCQ and mentions of insuffecient supplies of HCQ with lupus sufferers

Sorry for the long title, but wanted to get the point across in the title. This Morning have been discussing Trump taking hydroxychloroquine as a...

Sorry for the long title, but wanted to get the point across in the title. This ...

Ceri-NorthWales

•4 years ago

10 Replies

Persistent bloating

My bloating developed overnight, had numerous test which include gallbladder, ovarian cancer, a flexi sigmoidosapy a ct colonosapy, but nothing found, had...

My bloating developed overnight, had numerous test which include gallbladder, ov...

Lavender74

•4 years ago

22 Replies

Pip appeal turned down.

Feeling so low, a total fraud and so angry. Not sure whether I can fight anymore. I scored 6 and 4 which has gone down 2 points after asking them to re...

Feeling so low, a total fraud and so angry. Not sure whether I can fight anymor...

Niccigrace

•4 years ago

18 Replies

Does anyone have a bad day the day before methotrexate is due??

Hi just wondered if anyone has the same problem I seem to be having?? I take my methotrexate on a Wednesday and always have a rough ish day Thursday and friday...

Hi just wondered if anyone has the same problem I seem to be having?? I take my ...

Sara_A

•4 years ago

6 Replies

In view of recent events in the news would it be possible to have an update on the supply of HCQ from LUK please?

I think it would be helpful for those on HCQ to know if there is still plenty available in the UK.

I think it would be helpful for those on HCQ to know if there is still plenty av...

happytulip

•4 years ago

4 Replies

Trump at it again

So...the American President is back pronouncing that he takes Hydroxychloroquine to stop Covid 19. No thought of the shortages he could cause for us mere...

So...the American President is back pronouncing that he takes Hydroxychloroquine...

Montysmum1

•4 years ago

11 Replies

Mycophenolate Mofetil experience with lupus nephritis.

Hi all, I have recently been diagnosed with Lupus Nephritis and unfortunately the steroids i was on have damaged my kidneys. They have put me onto...

Hi all, I have recently been diagnosed with Lupus Nephritis and unfortunately th...

Ralby1

•4 years ago

13 Replies

Vasculitis lesions

I’m just wondering if anybody has these lesions seen in my posted photo . Just worried has it is getting worse than ever . I’ve always got these lesions , but...

I’m just wondering if anybody has these lesions seen in my posted photo . Just w...

Willow1414

•4 years ago

20 Replies

Hot tub problems with SLE in remission

We just recently got a hot tub, and I'm noticing that when I get in it, my feet almost immediately get charley horses, or my legs get achy and spasming. I...

We just recently got a hot tub, and I'm noticing that when I get in it, my feet...

Nat61

•4 years ago

3 Replies

Steroids....

Hello ... Would any of you be willing to share your experience of prednisone please. I’ve today completed my 1st 3 week course of 15/10/5mg day . I had high...

Hello ... Would any of you be willing to share your experience of prednisone pl...

SashaT64

•4 years ago

17 Replies

Palpatations and cold feet

Hope everyone is well. I've noticed in the last 3 weeks that whenever I have cold feet I start getting palpatations. I have to stop what I'm doing and lay down...

Hope everyone is well. I've noticed in the last 3 weeks that whenever I have col...

Hatelupus

•4 years ago

3 Replies

Mould spores in glass after use

Does anyone else have this - after using a glass I can get 2-3 inches of small mould spots. Not just in my house with my glass but in other people too. It...

Does anyone else have this - after using a glass I can get 2-3 inches of small m...

Iona467

•4 years ago

9 Replies

Sudden deep inhaling

This has been happening to me a few times a day without warning. I am on 3-4 liters of Oxygen (usually 3) which I really don’t feel is related. Also, I am...

This has been happening to me a few times a day without warning. I am on 3-4 li...

3Siblings

•4 years ago

3 Replies

Prof Neil Scolding

Guys I live in N.I and see my neurologist and rheumatologist within the Belfast Trust. I have SLE/Vasculitis and as with most of you a whole host of other...

Guys I live in N.I and see my neurologist and rheumatologist within the Belfast ...

TM1970

•4 years ago

13 Replies

Lupus diagnosing

Hi guys looking for advice docs are thinking I may have lupus. I have fatigue, uv sensitivity, skin rashes, mouth ulcers, headaches etc I was wondering how u...

Hi guys looking for advice docs are thinking I may have lupus. I have fatigue, u...

Kristina14

•4 years ago

7 Replies

Where have all the squirrels gone? Long time passing ...

When we moved here 15 years ago we had daily visits from red squirrels from the nearby woodland and their antics made us laugh. Although we bought a proper...

When we moved here 15 years ago we had daily visits from red squirrels from the ...

Spotty-ewe

•4 years ago

38 Replies

Anyone else got chilblains at the moment?

Seems unusual to have chilblains in the summer.

Marley

•4 years ago

15 Replies

Techie question

Hello Does anyone know how to shut down one of your posts on the site please? I asked if anyone had needed the services of a tradesman and many thanks to...

Hello Does anyone know how to shut down one of your posts on the site please? ...

Froggie70

•4 years ago

4 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for May 2020

Two months later, received a letter, but not 'the letter' - Confused?

Bloods

Calligraphy, an art in writing📜🖋🖊

Lower Body Temperature

Can someone please take a look at my skin after being in this lovely sun, and advise?

Sore nipples

COVID-19 and UK Hydroxychloroquine Supply (UPDATED 20/05/2020)

Weight gain

Feeling Deflated

For The Storm

Butterfly rash

Random Acts Of Kindness - Received Heartwarming Annonymous Post Today

'This Morning' discussing Trump taking HCQ and mentions of insuffecient supplies of HCQ with lupus sufferers

Persistent bloating

Pip appeal turned down.

Does anyone have a bad day the day before methotrexate is due??

In view of recent events in the news would it be possible to have an update on the supply of HCQ from LUK please?

Trump at it again

Mycophenolate Mofetil experience with lupus nephritis.

Vasculitis lesions

Hot tub problems with SLE in remission

Steroids....

Palpatations and cold feet

Mould spores in glass after use

Sudden deep inhaling

Prof Neil Scolding

Lupus diagnosing

Where have all the squirrels gone? Long time passing ...

Anyone else got chilblains at the moment?

Techie question

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