Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for June 2018

After Three years I am been taken off my medication for my illness Anca vasculitis.

On June 2015 I only had days to live my kidneys where at 6% I was send to hospital in Letterkenny Donegal IRELAND, After blood tests in A&E I was rushed into...

On June 2015 I only had days to live my kidneys where at 6% I was send to hospit...

Fred27

•6 years ago

8 Replies

Any ideas

Good morning all is there anyone out there have any ideas what is going on with arm nurses don’t seem to know doctors haven’t come up with anything I haven’t a...

Good morning all is there anyone out there have any ideas what is going on with ...

Rusty8

•6 years ago

10 Replies

Sorry but more 'Scams'

I had a Phone Call, this morning, about half past ten. Apparently I was going to 'lose', my Broad Band Connection, for around two weeks. However, if I gave...

I had a Phone Call, this morning, about half past ten. Apparently I was going to...

AndrewT

•6 years ago

4 Replies

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3years in pain

First was swelling feet and was told i have TB. Went to different tb test and all was negative.(20165 But still they gave medicine for it. I ask my doctor if i...

First was swelling feet and was told i have TB. Went to different tb test and al...

Afighter

•7 years ago

4 Replies

ANXIETY AND HAND TREMORS

I recently began having a sense of inner shakiness and hand tremors, particularly between 4pm and 6pm. ANXIETY feeds off itself so it becomes a self fulfilling...

I recently began having a sense of inner shakiness and hand tremors, particularl...

Christophene47

•7 years ago

16 Replies

Difficulty getting diagnosed

Hello. This is my first post since joining. I have only been ill for a few weeks, an illness that seems to have come out of the blue. But maybe not when I look...

Hello. This is my first post since joining. I have only been ill for a few weeks...

Districtnurse61

•7 years ago

14 Replies

Hello from a new member

Hi all, just spent a horrendous week with a flare up of hives/urticaria . Been having attacks sine mariund March 2017. Just referred to a dermatologist to...

Hi all, just spent a horrendous week with a flare up of hives/urticaria . Been...

Irenejoy

•7 years ago

6 Replies

M.R.S.A

I had fluid on my knee, had it drained. it came back a couple days later, went back to the same place had it drained again, then I went to their main office...

I had fluid on my knee, had it drained. it came back a couple days later, went b...

torrey

•7 years ago

1 Reply

M.R.S.A

I had fluid on my knee, had it drained. it came back a couple days later, went back to the same place had it drained again, then I went to their main office...

I had fluid on my knee, had it drained. it came back a couple days later, went b...

torrey

•7 years ago

1 Reply

MPo and PR3 ANCA testing

Can someone explain what a low mpo and pr3 means.. Ive read up on anca etc and what anca etc is and fully understand.. But all i needto know is what happens if...

Can someone explain what a low mpo and pr3 means.. Ive read up on anca etc and w...

Inkyann

•7 years ago

12 Replies

GETTING BETTER ALL THE TIME! TOO GOOD TO BE TRUE? VACULITIS, PMR/GCA??

Hi to All, My diagnosis has never been entirely clear. Antibodies to PR3 at 1.6 in September, 2016; given diagnosis of C- ANCA vasculitis, but no lung or...

Hi to All, My diagnosis has never been entirely clear. Antibodies to PR3 at 1.6 ...

Christophene47

•7 years ago

7 Replies

Good News, on DisAbled Pass

My 'Disabled Parking Permit' is due for renewal, at the end of July. I made the application, about a week ago, this was slightly complicated by my changing...

My 'Disabled Parking Permit' is due for renewal, at the end of July. I made the ...

AndrewT

•7 years ago

4 Replies

MPA

Did any of you have had experience with elevated P Anca after 6 years of remission of Microskopic polyangiitis. Antibodies have been elevated for 8 months...

Did any of you have had experience with elevated P Anca after 6 years of remissi...

tamidi

•7 years ago

11 Replies

Receiving ESA, now due a health assessment by ATOS

Hi everyone, I've had aortitis now for 2 and a half years and have been receiving income based Employment and Support Allowance. My condition is 'stable' but I...

Hi everyone, I've had aortitis now for 2 and a half years and have been receivin...

Suzycat

•7 years ago

7 Replies

Ill all the time

Couple of years ago posted on this site.Consensus was I may have churgh strauss.However doctors say my bloods dont indicate this.Recently spent 3...

Couple of years ago posted on this site.Consensus was I may have churgh s...

torfruda

•7 years ago

6 Replies

To ill to live to poor to die

Fibromyalgia CFS CRPS p ANCA positive. Have been bedridden for 90% of the last 7 years. Just diagnosed with vasculitis ( systemic) I am broke financially I...

Fibromyalgia CFS CRPS p ANCA positive. Have been bedridden for 90% of the last 7...

Mammakane

•7 years ago

7 Replies

METHOTREXATE AND AZANTHOPINE: GOOD OR BAD?

I was tried on Azanthopine about 3 months after my diagnosis of C- ANCA vasculitis. I took it and felt like it was killing me. I tried again, and constant...

I was tried on Azanthopine about 3 months after my diagnosis of C- ANCA vasculit...

Christophene47

•7 years ago

3 Replies

Does NHS in UK cover WG for students of other countries?

Dear Friends, I am Nagesh, from Bangalore, India. My son Nischal, now 23years was diagnosed with ‘Wegener’s granulomatosis’ when he was 13 years old. Now he is...

Dear Friends, I am Nagesh, from Bangalore, India. My son Nischal, now 23years wa...

nagesh

•7 years ago

4 Replies

EGPA

Diagnosed with EGPA two years ago but still looking for the treatment that will relieve some of my symptoms

Diagnosed with EGPA two years ago but still looking for the treatment that will ...

Blimper

•7 years ago

10 Replies

Vasculitis

As I understand it Wengers is the old name for anca vasculitis first thing my consultant did was to biopsy my kidney it was negative but I still have the...

As I understand it Wengers is the old name for anca vasculitis first thing my co...

Glenville

•7 years ago

5 Replies

New blood results

Hi I have been suffering from FM and CFS I have a positive Pam a blood result recently, does this mean I have vasculitis? I have bedboundd with chronic pain...

Hi I have been suffering from FM and CFS I have a positive Pam a blood result re...

JJKANE389

•7 years ago

4 Replies

Up Date re., toe's having spasm/pain

Well picked up med's from chemist that GP had sent over for me. Something tells me GP and Rheumatologist are communicating with each other. Have Folic Acid...

Well picked up med's from chemist that GP had sent over for me. Something tells ...

Boudica1

•7 years ago

1 Reply

B12/folate deficiency.

Has more bloods taken yesterday, this after-noon GP phones and informs me my b12/folate levels are low, so I have to pick up prescription's from chemist. Is...

Has more bloods taken yesterday, this after-noon GP phones and informs me my b12...

Boudica1

•7 years ago

7 Replies

vasculitis

I have had it since 2016....on retuxin.....vasculitis killed my kidneys...on dialysis now....a lot of mussle pain and nerve damage...got it in all three sizes...

I have had it since 2016....on retuxin.....vasculitis killed my kidneys...on dia...

glendalafitte

•7 years ago

2 Replies

ANCA negative now!

After just two Rituxan infusions, two weeks apart, my ANCA has gone to negative. It was 1:128 since the first testing January 12 (and my diagnosis of MPA was...

After just two Rituxan infusions, two weeks apart, my ANCA has gone to negative....

PattyMPA

•7 years ago

6 Replies

Bad leg pain after first Rituxan

I developed very bad upper leg pain first on the right and left sides down from the hip, then this week (after 2nd Rituxan infusion) in the front of thighs....

I developed very bad upper leg pain first on the right and left sides down from ...

PattyMPA

•7 years ago

2 Replies

Takayashu arteritis

I have had this condition for 9 months and have been treated with methotrexate and prednisone but the mxt made me lose hair and didn’t actually seem as though...

I have had this condition for 9 months and have been treated with methotrexate a...

Julesbanks

•7 years ago

4 Replies

Vasculitis

Does anybody excrete loads of grease with this disease only started on last flare up like my heads been in a chip pan

Does anybody excrete loads of grease with this disease only started on last flar...

Glenville

•7 years ago

2 Replies

LDN sounds too good to be true

Has anyone heard of LDN? Maybe it is just a scam from the internet but it sounds like a miracle cure for a bunch of autoimmune disorders plus cancer and...

Has anyone heard of LDN? Maybe it is just a scam from the internet but it sound...

Cathywp

•7 years ago

4 Replies

ESA

Hi I have recently been awarded ill health pension, with a lump sum and arrears dating back to January 2017. I understand they will reduce my contribution...

Hi I have recently been awarded ill health pension, with a lump sum and arrears ...

lizzie93

•7 years ago

3 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for June 2018

After Three years I am been taken off my medication for my illness Anca vasculitis.

Any ideas

Sorry but more 'Scams'

3years in pain

ANXIETY AND HAND TREMORS

Difficulty getting diagnosed

Hello from a new member

M.R.S.A

M.R.S.A

MPo and PR3 ANCA testing

GETTING BETTER ALL THE TIME! TOO GOOD TO BE TRUE? VACULITIS, PMR/GCA??

Good News, on DisAbled Pass

MPA

Receiving ESA, now due a health assessment by ATOS

Ill all the time

To ill to live to poor to die

METHOTREXATE AND AZANTHOPINE: GOOD OR BAD?

Does NHS in UK cover WG for students of other countries?

EGPA

Vasculitis

New blood results

Up Date re., toe's having spasm/pain

B12/folate deficiency.

vasculitis

ANCA negative now!

Bad leg pain after first Rituxan

Takayashu arteritis

Vasculitis

LDN sounds too good to be true

ESA

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