Posts - LUPUS UK | HealthUnlocked

LUPUS UK

31,728 members • 28,088 posts

All posts for August 2023

Zentiva update

Met a lovely assistant in Boots yesterday. She spent ages on hold to Zentiva , gave up and took my number . Anyway she rang this morning, it's back in stock...

Met a lovely assistant in Boots yesterday. She spent ages on hold to Zentiva , g...

Potatoheat

•8 months ago

6 Replies

NHS Lothian and Borders virtual Coffee and Chat meeting - 9th September

Join us for the next virtual meeting of the LUPUS UK NHS Lothian and Borders area group - an opportunity to meet with others with lupus in your area - friends...

Join us for the next virtual meeting of the LUPUS UK NHS Lothian and Borders are...

michaellasmith

Administrator•8 months ago

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zentivia

hi, a little while ago i posted on the difficulty obtaining Zentivia Hydroxychloriquine. I contacted Zentivia and had a very prompt and helpful reply which I...

hi, a little while ago i posted on the difficulty obtaining Zentivia Hydroxychlo...

frog

•8 months ago

6 Replies

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FACE ACHE

Scan says its not SINUSITIS , not a Dental issue , eyes ok, Consultant dosnt think its associated with my Lupus , and yet my cheeks especially the right one...

Scan says its not SINUSITIS , not a Dental issue , eyes ok, Consultant dosnt thi...

TGSHJ71

•8 months ago

6 Replies

SLE (Lupus) & Chest/Rib/Collarbone Pain

Hi I was diagnosed with SLE in 2018. I often get flare ups which comes with unbearable pain in my sternum. Its worse when I bend forward or try to lay...

Hi I was diagnosed with SLE in 2018. I often get flare ups which comes with un...

StarShine4

•8 months ago

18 Replies

Osteochondral defect, loose bodies in the knee and Baker's cyst.

Hi everyone,Hope you are all managing. Since the beginning of the year, I have been experiencing tear sensation at the back of my right knee. When I told my...

Hi everyone,Hope you are all managing. Since the beginning of the year, I have b...

ijeasike

•8 months ago

6 Replies

referral

Hi my GP sent an urgent referral to rheumatology for me. I had a letter telling me my referral was being reviewed and either rheumatology or gp would get back...

Hi my GP sent an urgent referral to rheumatology for me. I had a letter telling ...

TheRedOnes

•8 months ago

10 Replies

other options to hydroxychloriquine

hello at this point I have no options but to take medication as the risk of another serious thing happening makes me cautious are there any other options to...

hello at this point I have no options but to take medication as the risk of an...

MillieSunny

•8 months ago

23 Replies

Chest/back pain advice please

Hi. I've been getting a low grade ache across my sternum/breastbone area for a couple of months which seems to radiate from the centre, and often the same...

Hi. I've been getting a low grade ache across my sternum/breastbone area for a c...

magicpink

•8 months ago

5 Replies

How to manage energy

I'm struggling to manage my energy, I gave up work three years ago as I was too unwell to continue. The rheumatologist suggested swimming, I did 20 mins on...

I'm struggling to manage my energy, I gave up work three years ago as I was too ...

DogsMakeLifeGood

•8 months ago

22 Replies

Lupus rash/spots spread to scalp.

Hi, I have Lupus and Sjogrens . This year has been difficult with increased photosensitivity. Skin rash has spread to my scalp. Red spots and flaky and...

Hi, I have Lupus and Sjogrens . This year has been difficult with increased phot...

Haired

•8 months ago

16 Replies

canagliflozin hope?

just read that this drug can help Lupus sufferers. Anyone know anything other than the basics? It is reported to help with arthritis pain, works on T cells so...

just read that this drug can help Lupus sufferers. Anyone know anything other th...

cobsie

•8 months ago

3 Replies

Cutie Pics is back

Hello everyoneSorry that there's been a long break from 'cutie pics' but i've been very poorly with shingles. Now i'm feeling better but still very fatigued i...

Hello everyoneSorry that there's been a long break from 'cutie pics' but i've be...

misty14

•8 months ago

57 Replies

Zentivia

Hi, I was looking at hydroxychloriquine Zentivia, and read their introduction page. STEFFEN SALTOFTE APPOINTED AS CEO OF ZENTIVA Click here March 21, 2023 /...

Hi, I was looking at hydroxychloriquine Zentivia, and read their introduction pa...

frog

•8 months ago

1 Reply

that Zentiva

I have just been to the Well Pharmacy to see if they have the small amount of hydroxy that they owe me, but sadly not. They use Alliance so I explained about...

I have just been to the Well Pharmacy to see if they have the small amount of hy...

cobsie

•8 months ago

6 Replies

Do you receive your care at the Kellgren Centre for Rheumatology, Manchester Royal Infirmary?

If you do, please spare three minutes to complete our online survey about your experiences. LUPUS UK will be conducting a Centre of Excellence inspection of...

If you do, please spare three minutes to complete our online survey about your e...

Alida_Bennett

Partner•8 months ago

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What's your experience of coming of steroids

So I have my rheumatology appointment next week so hopefully will get a better understanding of what's going on. In the meantime I am on mycophenalate and a...

So I have my rheumatology appointment next week so hopefully will get a better u...

Autolupus

•8 months ago

7 Replies

Wound healing thoughts?

I fell over 20 days ago. A younger/healthier person might have gotten away with a nasty bruise, but with my steroid-thinned skin and poor circulation, I ended...

I fell over 20 days ago. A younger/healthier person might have gotten away with...

whisperit

•8 months ago

17 Replies

Rituximab

Hi all, I have had lupus for over 20 years, I am currently on Hydroxychloroquine and Methotrexate and my consultant had decided to try me on two rounds of...

Hi all, I have had lupus for over 20 years, I am currently on Hydroxychloroqui...

cathy-

•8 months ago

3 Replies

Possible early stages of lupus?

I started having joint pain a few months ago, mostly hands and feet, together with a little tingling in both. I also started to have hot flushes (not...

I started having joint pain a few months ago, mostly hands and feet, together wi...

hose1975

•8 months ago

6 Replies

Do you receive your care at the Kellgren Centre for Rheumatology, Manchester Royal Infirmary? We want to hear from you!

Do you receive your care at the Kellgren Centre for Rheumatology, Manchester Royal Infirmary? If you do, please spare three minutes to complete our online...

Do you receive your care at the Kellgren Centre for Rheumatology, Manchester Roy...

Chanpreet_Walia

LUPUS UK•8 months ago

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Arrival on the Vegus Nerve

Interesting article in todays Guardian re research into the Vegus Nerve. As a SIBO sufferer there is a lot of talk amongst experts in the connection between...

Interesting article in todays Guardian re research into the Vegus Nerve. As a S...

Halfwayuphill

•8 months ago

10 Replies

What is this rash on my back?!

I was that work today and it was very hot outside. I got a little overheated, but then went in to eat lunch. By the time I got up to go back to work my back...

I was that work today and it was very hot outside. I got a little overheated, bu...

Clemsonboi

•8 months ago

6 Replies

Managed to get Zentiva

Hi All I saw a very sympathetic GP. this morning who has given me a prescription for a years worth of Zentiva. I took it to an independent chemist and he is...

Hi All I saw a very sympathetic GP. this morning who has given me a prescriptio...

kt11

•8 months ago

18 Replies

hair loss

Hi I’m having a lot of hair loss, I recently had an infection and I always seem to lose more hair then, it’s coming out in clumps. Has anyone got any tips? I...

Hi I’m having a lot of hair loss, I recently had an infection and I always seem ...

Graystar

•8 months ago

18 Replies

Methotrexate

Good morning. I was taken off Mycophenolate and my Rheumatologist is now contemplating starting me on Methotrexate. Has anyone found this drug beneficial. I...

Good morning. I was taken off Mycophenolate and my Rheumatologist is now contem...

robsim

•8 months ago

7 Replies

Female make up

How do I find professional / safe advice about buying make up to improve the appearance of my facial skin.

How do I find professional / safe advice about buying make up to improve the app...

100Lupus

•8 months ago

5 Replies

Thankyou.Pip questions

Thankyou so much to everyone that replied, far too many responses to reply individually, but I’m feeling really supported that you’ve all tried to help, and...

Thankyou so much to everyone that replied, far too many responses to reply indiv...

joanneM200

•8 months ago

1 Reply

Evidence for PIP

Hi. After 12 years of being quite poorly and diagnosed with Lupus 6/7 years ago, ( but still managing to work) got to the point where I feel I want to try...

Hi. After 12 years of being quite poorly and diagnosed with Lupus 6/7 years ago...

joanneM200

•8 months ago

25 Replies

Sea swimming

I have been swimming in the North Sea and lakes for about 3 years. I have lupus and RA. I couldn't recommend it highly enough. My joints feel less stiff and...

I have been swimming in the North Sea and lakes for about 3 years. I have lupus ...

heatherose

•8 months ago

3 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for August 2023

Zentiva update

NHS Lothian and Borders virtual Coffee and Chat meeting - 9th September

zentivia

FACE ACHE

SLE (Lupus) & Chest/Rib/Collarbone Pain

Osteochondral defect, loose bodies in the knee and Baker's cyst.

referral

other options to hydroxychloriquine

Chest/back pain advice please

How to manage energy

Lupus rash/spots spread to scalp.

canagliflozin hope?

Cutie Pics is back

Zentivia

that Zentiva

Do you receive your care at the Kellgren Centre for Rheumatology, Manchester Royal Infirmary?

What's your experience of coming of steroids

Wound healing thoughts?

Rituximab

Possible early stages of lupus?

Do you receive your care at the Kellgren Centre for Rheumatology, Manchester Royal Infirmary? We want to hear from you!

Arrival on the Vegus Nerve

What is this rash on my back?!

Managed to get Zentiva

hair loss

Methotrexate

Female make up

Thankyou.Pip questions

Evidence for PIP

Sea swimming

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