Posts - LUPUS UK | HealthUnlocked

LUPUS UK

31,727 members • 28,087 posts

All posts for June 2023

Breathlessness

hi everyone, I wonder if I could have some advice! I’m having what I assume is a lupus flare (although my pain isn’t as bad as it sometimes gets), my main...

hi everyone, I wonder if I could have some advice! I’m having what I assume i...

Alexia01

•10 months ago

22 Replies

newly diagnosed today-question on photosensitivity

hi all Was just diagnosed today with lupus I’m still reeling I left the rheumatologists office and of course thought of all the questions afterwards I’ve...

hi all Was just diagnosed today with lupus I’m still reeling I left the rheum...

NewLupusdiag

•10 months ago

31 Replies

Prescription costs

Hi, I've lived with lupus for more than 25 years, most of my major issues have been caused by blood clots, infarction to lungs and heart as well as dvt and pe,...

Hi, I've lived with lupus for more than 25 years, most of my major issues have b...

Gooneruk

•10 months ago

11 Replies

Want to take advantage of all our features? Just log in!

Enlarged aorta

I've just been diagnosed with an enlarged aorta (heart, not abdomen) I don't know who to talk to as I don't want to worry family, I am supposed to have a CT...

I've just been diagnosed with an enlarged aorta (heart, not abdomen) I don't kno...

kt11

•10 months ago

6 Replies

Tachycardia and Lupus

Hi, I've been posting a bit recently as I'm in a never ending flare, worse one for about 7 years. Finally saw my consultant this week for the first time since...

Hi, I've been posting a bit recently as I'm in a never ending flare, worse one f...

Beau2016

•10 months ago

36 Replies

Private Rheumatologist Consultation

Would anyone have recommendation on private rheumatologist close to Falmouth? My next NHS rheumatologist appointment is in Aug. I need to see rheumatologist...

Would anyone have recommendation on private rheumatologist close to Falmouth? M...

Mikiki

•10 months ago

Be the first to reply

quick question

Hi all Just a quick one .. has anyone tested positive for Anti OJ antibodies ? Thank you as always for reading . 🙏x

Hi all Just a quick one .. has anyone tested positive for Anti OJ antibodies ?...

Tiggywoos

•10 months ago

11 Replies

Doctors …

Hi everybody. I have been a member of health unlocked for some years and have read some really interesting posts. All members seems to have a team of doctors...

Hi everybody. I have been a member of health unlocked for some years and have re...

rafael

•10 months ago

12 Replies

Zentiva shortages

I have been told by my Pharmacist that Zentiva have sold the license for Hydroxy ( originally from the makers of Plaquenil ) to a Uk based lab and that they...

I have been told by my Pharmacist that Zentiva have sold the license for Hydroxy...

RuthGoodey

•10 months ago

10 Replies

New job

Good morning fellow Lupies! I was hoping for some opinions please. I recently accepted a new 12 week temp job (with the possibility to go perm later) and was...

Good morning fellow Lupies! I was hoping for some opinions please. I recently ac...

BookishVibes

•10 months ago

13 Replies

Flares?

Hi all,I am on Plaquenil, and except for when l had flu over xmas and the Covid booster, the Plaquenil has worked really well. I am going through a...

Hi all,I am on Plaquenil, and except for when l had flu over xmas and the Covid ...

Blue_feather

•10 months ago

8 Replies

Advice for preparing for rheumatology appointment?

Hi everyone, I haven't posted in here in a while, but I finally have my rheumatology appointment on Tuesday. I'm currently trying to prepare everything to...

Hi everyone, I haven't posted in here in a while, but I finally have my rheumat...

Retsuko

•10 months ago

5 Replies

SIADH

please had any one had this

spanisheyes

•10 months ago

1 Reply

Postive ANA?

Hi, I recently had a postive ANA result (1:160 speckled) alongside elevated CRP. Few years ago had tests that my GP said were indicative of lupus (abnormal...

Hi, I recently had a postive ANA result (1:160 speckled) alongside elevated CRP...

GreenTealSeal

•10 months ago

5 Replies

Research study recruiting now - can genetic testing identify people at risk of eye damage from hydroxychloroquine?

Hydroxychloroquine is a safe and effective drug for many symptoms of lupus. However, a small number of people taking it develop eye damage (though the risk of...

Hydroxychloroquine is a safe and effective drug for many symptoms of lupus. Howe...

Debbie_kinsey

Administrator•10 months ago

Be the first to reply

Weight gain on long term prednisolone

I was diagnosed with Lupus 11yrs ago. I have been on various doses of prednisolone since then and have gained over three stone in weight. Does anyone have...

I was diagnosed with Lupus 11yrs ago. I have been on various doses of prednisol...

rubybelle12

•10 months ago

19 Replies

Looking for people with experience of lupus affecting the kidneys (lupus nephritis) to review patient materials about a new treatment

Do you have experience of lupus affecting your kidneys (lupus nephritis)? Would you be interested in giving feedback on some patient information for a new...

Do you have experience of lupus affecting your kidneys (lupus nephritis)? Would ...

Debbie_kinsey

Administrator•10 months ago

2 Replies

Inpatient stay - Overlap Syndrome?

Hello all! So I have posted on here over the past year a few times about my progress with autoimmune disease. So they so far have high suspicion of Lupus/SLE...

Hello all! So I have posted on here over the past year a few times about my pr...

GottaAsk

•10 months ago

27 Replies

Thoughts on L lysine

Hi everyone, I suffer from cold sores and I wanted to know if anybody take L lysine along with the valtrex or acyclovir ? I have been having one outbreak...

Hi everyone, I suffer from cold sores and I wanted to know if anybody take L l...

Jances13

•10 months ago

4 Replies

Discontinuing hydroxychloroquine (or not)

I have fairly mild SLE and have stopped hydroxychloroquine because of some unrelated retinal damage caused by sepsis. I find I am tired all the time, more sun...

I have fairly mild SLE and have stopped hydroxychloroquine because of some unrel...

Paloma25

•10 months ago

31 Replies

Why is Uvistat the only prescription sunscreen

When you're entitled to SPF50+ sunscreen on prescription, why is the only option such a thick cream that it damages skin when applied? I fortunately had...

When you're entitled to SPF50+ sunscreen on prescription, why is the only option...

solo99

•10 months ago

8 Replies

peri menopause

Hi I am 44 and peri menopausal hot flushes, sleepless nights, brain fog on top of my lupus brain fog I am surprised I can remember my own name. Dr does not...

Hi I am 44 and peri menopausal hot flushes, sleepless nights, brain fog on top ...

Kell12

•10 months ago

13 Replies

Zentiva update

Hi all. I got this update from Zentiva this morning regarding hydroxychloroquine: Thank you for your enquiry regarding hydroxychloroquine. As part...

Hi all. I got this update from Zentiva this morning regarding hydroxychloroqu...

Treetop33

•10 months ago

8 Replies

Coffee and Chat meeting in Leeds - 24th June

Join us for our friendly and relaxed Coffee and Chat meeting in Leeds on Saturday 24th June at 12 noon. Everyone is welcome, including those with lupus or an...

Join us for our friendly and relaxed Coffee and Chat meeting in Leeds on Saturda...

Alida_Bennett

Partner•10 months ago

Be the first to reply

Methotrexate

Hi everyone. Anyone on here who has been prescribed methotrexate. I’ve been on hydroxychloroquine for 10 years now. Last year I had a flare up when we had the...

Hi everyone. Anyone on here who has been prescribed methotrexate. I’ve been on h...

elizabeth-57

•10 months ago

17 Replies

Feet pain ( metatarsalgia?)

Metatarsalgia feet pain soles , I’m taking some new meds on top of my old one are : atorvastin 20 mg aspirin 75 mg and mycophenolate 1 g twice a day , folic...

Metatarsalgia feet pain soles , I’m taking some new meds on top of my old one ...

Melaxx

•10 months ago

1 Reply

Zentiva hydroxy shortages

With the latest shortage, I did a bit of research of past posts and this seems to be an issue that comes up every few years. I think it is completely...

With the latest shortage, I did a bit of research of past posts and this seems t...

Treetop33

•10 months ago

32 Replies

fluorescent lighting

Hi all. Apologies if there is already a thread looking at this. I’m a recent diagnosis with lupus. I have severe photosensitivity, the killer for me is I work...

Hi all. Apologies if there is already a thread looking at this. I’m a recent dia...

NewToHats

•10 months ago

4 Replies

Love to all ❤️🧡💛💚💙💜

Thank you 😊 for all the replies I haven't got through them all yet but reading them makes me realise this is part of life. Everyone has highs and lows....

Thank you 😊 for all the replies I haven't got through them all yet but reading ...

Butt3rf1y

•11 months ago

2 Replies

Zentiva Hydroxychloroquine shortage!!

Hi, I have been fighting for Zentiva hydroxy for over a month now and still my pharmacy cannot get them, they keep being told by Zentiva that all stocks are in...

Hi, I have been fighting for Zentiva hydroxy for over a month now and still my p...

Poshcards

•11 months ago

20 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for June 2023

Breathlessness

newly diagnosed today-question on photosensitivity

Prescription costs

Enlarged aorta

Tachycardia and Lupus

Private Rheumatologist Consultation

quick question

Doctors …

Zentiva shortages

New job

Flares?

Advice for preparing for rheumatology appointment?

SIADH

Postive ANA?

Research study recruiting now - can genetic testing identify people at risk of eye damage from hydroxychloroquine?

Weight gain on long term prednisolone

Looking for people with experience of lupus affecting the kidneys (lupus nephritis) to review patient materials about a new treatment

Inpatient stay - Overlap Syndrome?

Thoughts on L lysine

Discontinuing hydroxychloroquine (or not)

Why is Uvistat the only prescription sunscreen

peri menopause

Zentiva update

Coffee and Chat meeting in Leeds - 24th June

Methotrexate

Feet pain ( metatarsalgia?)

Zentiva hydroxy shortages

fluorescent lighting

Love to all ❤️🧡💛💚💙💜

Zentiva Hydroxychloroquine shortage!!

Search posts

Pinned Posts

Latest poll

Did you experience more frequent and/or severe lupus flares during the hot summer 2018 compared to summer 2017? (Please explain in comments)

Topics

Archive