Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,780 members • 6,753 posts

All posts for January 2023

How long before methotexrate 'kicks-in'?

I have been taking MTX for past 17 weeks ( last 2 weeks by injection) for treatment of uveitis. But I see no change in the inflammation and the recent FFA...

I have been taking MTX for past 17 weeks ( last 2 weeks by injection) for treatm...

•1 year ago

A Very Pleasant Journey Indeed.

Dear All, Yesterday afternoon I had a Dermatology Appointment, at Ipswich Hospital. However, rather than my Mother Driving, we arranged for a Voluntary Driver...

Dear All, Yesterday afternoon I had a Dermatology Appointment, at Ipswich Hospi...

•1 year ago

Vasculitis of the eye

I have vasculitis of the eye and have steroid implants in the eye. Now the ozurdex implant is wearing away and the oedema is back in the eye. The...

I have vasculitis of the eye and have steroid implants in the eye. Now the ozurd...

•1 year ago

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patients Knows Best

Is anybody having problems with PKB. My results &:letters do not appear to be updating. Does anybody know who to contact if this happens? Tia

Is anybody having problems with PKB. My results &:letters do not appear to be u...

•1 year ago

autoimmune disease of the ears

Does anyone have GPA only in their ears?? I have ear pain, tinnitus, and muffled ears. On Methotrexate and Prednisone and it is just getting worse....

Does anyone have GPA only in their ears?? I have ear pain, tinnitus, and muffle...

•1 year ago

John Mills received his MBE from the Kings representative the Lord Lieutenant for Derbyshire yesterday.

This is the link to the BBC website page covering the event....

This is the link to the BBC website page covering the event....

Administrator•1 year ago

My Roof is Finally Repaired and I have a 'New' Lamp.

Dear All, I have finally had the Hole In My Roof repaired. The Contractor arrived, Thursday morning, and 'lashed' a ladder, for safety, climbed up, reached...

Dear All, I have finally had the Hole In My Roof repaired. The Contractor arriv...

•1 year ago

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shortness of breath

Can anyone share advice? I have had Bronchiectasis for over 20 years, if not lifelong. And now I have the vascular disease MPA, or Microscopic Polyangiitis. I...

Can anyone share advice? I have had Bronchiectasis for over 20 years, if not lif...

•1 year ago

My life

My life now is looking at a locked chest of drawers and having to go find the key, only to forget were the chest of drawers are. Sometimes even at home. Even...

My life now is looking at a locked chest of drawers and having to go find the ke...

•1 year ago

Anyone with EGPA

Hi, is there anyone with EGPA? Would be lovely to have hear from someone in the same position as me as I have to explain it to my own Dr! Thank you

Hi, is there anyone with EGPA? Would be lovely to have hear from someone in the ...

•1 year ago

A bit 'Off Subject' But Holiday Booked, for us Both.

Dear All, Yesterday I successfully 'Booked', and Insured, a Holiday at Jubilee Lodge- a Revitalise Centre (formally The Winged Fellowship Trust) in Chigwell,...

Dear All, Yesterday I successfully 'Booked', and Insured, a Holiday at Jubilee ...

•1 year ago

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BBC NEWS - Terminally ill MBE winner to receive award in local pub

A former dentist will receive his MBE near his Derbyshire home as he is too ill to travel to London. For all those who have not seen this...

A former dentist will receive his MBE near his Derbyshire home as he is too ill ...

Administrator•1 year ago

vasculitis - fatigue, hives, flare ups, fibromyalgia, muscular skeletal problems all round my body - and getting worse eg slipped discs etc

all the above really. I could do with information and advice - I am desperate to get my life back. No one understands fatigue and pain. Thank you so much B

all the above really. I could do with information and advice - I am desperate t...

•1 year ago

Vasculitis ??

Can you explain what is vasculitis ? How do you get it or avoid it ?

Can you explain what is vasculitis ? How do you get it or avoid it ?

•1 year ago

Perhaps 'One' for the Administrators?

I Answered a 'Post', a few days (weeks) ago, regarding a 'Predatory' Man. The Post gave a 'Heads Up', on a Person, who was apparently a Very Bad Influence. I...

I Answered a 'Post', a few days (weeks) ago, regarding a 'Predatory' Man. The Po...

•1 year ago

SUDDEN Rise in ESR Pt. 3

Hello, Thank you again to the kind folks that commented on my last posts re: Sudden Rise in ESR. Here is the post-appointment with the rheumatologist update....

Hello, Thank you again to the kind folks that commented on my last posts re: Sud...

•1 year ago

Help Vasculitis UK to win a share of £60,000

Please help Vasculitis UK to have a chance! Click on https://www.seib.co.uk/about-us/seib-giving/... and type Vasculitis UK ( charity number 1180473) Thank...

Please help Vasculitis UK to have a chance! Click on https://www.seib.co.uk/abo...

Administrator•1 year ago

Rituximab

Hi all!Can anyone tell me why rituximab treatments are restricted, I was told, to 2 years? I realise cost is involved, but I had my treatments in france, but...

Hi all!Can anyone tell me why rituximab treatments are restricted, I was told, t...

•1 year ago

BIOVAS clinical trial for Non-ANCA associated vasculitis.

Vasculitis UK is supporting the BIOVAS trial by sharing their project to help them recruit patients. If you are interested, please contact your local team to...

Vasculitis UK is supporting the BIOVAS trial by sharing their project to help th...

Administrator•1 year ago

there’s a new lanyard for the immuno-compromised

Over the weekend a highly immuno-compromised friend told me about this new lanyard - like me, she is still shielding except for health appointments. Anyway, i...

Over the weekend a highly immuno-compromised friend told me about this new lanya...

•1 year ago

Rituximab

Hi All, Happy New year to yin and aww. I'm scheduled for my first Rituximab infusion this week and getting cold feet ( second thoughts). Any advise and...

Hi All, Happy New year to yin and aww. I'm scheduled for my first Rituximab inf...

sorefeetsoldier

•1 year ago

I have a Hole, in my Roof but I'm Glad!

Dear All, Am I Crazy? I have a Hole, in my Roof!- a Tile 'Torn Away', Roofing Felt and All..... BUT I DON'T have any of the Heating, Hot Water or...

Dear All, Am I Crazy? I have a Hole, in my Roof!- a Tile 'Torn Away', Roofing F...

•1 year ago