Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,876 members•6,908 posts

All posts for May 2018

MMP Mucous Membrane Pemphigoid...anyone else?

I woke up Tuesday with bumps in my mouth. Went to the periodontist this morning and she gave me this diagnosis. I have to go back in 10 days and she will do a...

I woke up Tuesday with bumps in my mouth. Went to the periodontist this morning ...

arcr

•7 years ago

6 Replies

1st post any advice welcome

Hi All,I was diagnosed with Systemic vasculitis around 1 year ago,have looked on here quite a bit and I feel more should have been done. I am extremely weak,my...

Hi All,I was diagnosed with Systemic vasculitis around 1 year ago,have looked on...

tommi47

•7 years ago

33 Replies

Ostrich Syndrome

My husband Keith has severe Rheumatoid Arthritis, Raynaud's (sorry about the spelling) Syndrome and Severe Ostrich Syndrome. Ostrich Syndrome? I hear some of...

My husband Keith has severe Rheumatoid Arthritis, Raynaud's (sorry about the spe...

Boudica1

•7 years ago

6 Replies

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How does vasculitis fit with Equality act 2010

I’m currently applying for jobs and I am always asked whether I have a disability defined by the equality act 2010. I do have a long condition - Churg Strauss...

I’m currently applying for jobs and I am always asked whether I have a disabilit...

Katie18

•7 years ago

6 Replies

In Praise of Vitamin B12..

A note directed in particular towards those folk affected by Hypersensitive Vasculitis… I was diagnosed about 3 years ago with having High Blood Pressure, and...

A note directed in particular towards those folk affected by Hypersensitive Vasc...

Adrim

•7 years ago

1 Reply

Rituxan / Rituximab -- gastrointestinal side effects or coinciding viral infection?

I was diagnosed with MPA in 2013. I was brought into remission with cyclophosphamide and prednisone but I've been receiving Rituxan infusions bi-annually for...

I was diagnosed with MPA in 2013. I was brought into remission with cyclophosph...

michichgo

•7 years ago

3 Replies

Private consultation for vasculitis

I am asking on behalf of a friend who lives abroad and is seeking a private consultation for poorly responding livedoid vasculitis. Does anyone know of anyone...

I am asking on behalf of a friend who lives abroad and is seeking a private cons...

Natalie1984

•7 years ago

5 Replies

FUNGAL INFECTION RISK FOR PEOPLE ON IMMUNOSUPPRESSANT DRUGS

There have been a number of reports lately regarding the risks of serious and untreatable fungal infections for those on immunosuppressive medication, which is...

There have been a number of reports lately regarding the risks of serious and un...

MAC12

•7 years ago

5 Replies

Need advice on the disease

Hello it's my 3rd month I'm on immunosuppression drugs ,,I have got red colour marks in stomach n legs ,,is it due to drugs or due to the disease which m...

Hello it's my 3rd month I'm on immunosuppression drugs ,,I have got red colour m...

Dineshbothra123

•7 years ago

2 Replies

I'm New Here

I was diagnosed with GPA Vasculitis in May 2017 after suffering from various symptoms for 2 years previously. Had 6 treatments of cyclophosphamide and am now...

I was diagnosed with GPA Vasculitis in May 2017 after suffering from various sym...

NikkiFlack

•7 years ago

6 Replies

Wengers granulomitsis

I just got a new Dr. called today p-anca positive. But other test negative. Now she wants me too do retoxicbaa or mexotexha.I am scared of all medicine.

I just got a new Dr. called today p-anca positive. But other test negative. Now ...

jenwide70

•7 years ago

2 Replies

ON MY MIND

I should add that I have tried massage, chiropractic, accupuncture, dorsal rami injections and radiofrequency cold nerve ablation for chronic back pain;...

I should add that I have tried massage, chiropractic, accupuncture, dorsal rami ...

Christophene47

•7 years ago

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OPIATE PAIN MEDICATIONS IN ADDITION TO THE USUAL GPA MEDS ???

As many of you know , federal and state governments in the US have severely clamped down on the prescribing of any drug in the opiate family at the same time...

As many of you know , federal and state governments in the US have severely clam...

Christophene47

•7 years ago

9 Replies

WHAT HAS BEEN YOUR EXPERIENCE WITH RITUXAMAB? HAS IT RESTORED YOU TO A SENSE OF NORMALCY WHEN ALL ELSE HAS NOT?

My question speaks for itself. But if it took you into remission, how long did it take; how many infusions were needed before you felt well? How long did your...

My question speaks for itself. But if it took you into remission, how long did i...

Christophene47

•7 years ago

18 Replies

Rheumatology Today

Had a letter on Saturday asking me to make an appointment, so phone up and got one for this morning at Coventry. Wow thats quick. Not a good start to the day...

Had a letter on Saturday asking me to make an appointment, so phone up and got o...

Boudica1

•7 years ago

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GPA, Rituximab and chicken pox...

Hi all, I am under treatment for GPA and am on pred (12.5mg) rituximab and various other meds. I was told at the start of my treatment that exposure to...

Hi all, I am under treatment for GPA and am on pred (12.5mg) rituximab and vari...

Wengle82

•7 years ago

5 Replies

Exemption From Prescription Charges for Long Term Conditions Petition

We believe that those living with long-term conditions such as autoimmune diseases should not have to pay for their prescriptions. If you agree and want to see...

We believe that those living with long-term conditions such as autoimmune diseas...

John_Mills

Volunteer•7 years ago

1 Reply

Found Out One Thing

Without a referral from another physician, I was able to see a neuro -ophthalmologist because rheumatologist did not seem very concerned about an incident of...

Without a referral from another physician, I was able to see a neuro -ophthalmol...

Christophene47

•7 years ago

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Emotional Reactions

Have you experienced feelings of guilt for being "lazy" and not good for much.? I feel that all the time; unless I MUST leave the house for a medical appt.or...

Have you experienced feelings of guilt for being "lazy" and not good for much.? ...

Christophene47

•7 years ago

11 Replies

Vasculitis

Hi if this helps the people looking to see if they have vasculitis this is it hope this helps I expect there are other things that look like it lol

Hi if this helps the people looking to see if they have vasculitis this is it ho...

Rusty8

•7 years ago

13 Replies

You are invited to participate in an important study about the effects of glucocorticoids (steroids).

You are invited to participate in an important online study about the effects of glucocorticoids (also known as steroids) and which of these effects are most...

You are invited to participate in an important online study about the effects o...

John_Mills

Volunteer•7 years ago

12 Replies

Temporal Arteritis?

Dear all, After months and months of testing, and doctoring, I have come full circle. A few years ago, before I ever heard of vasculitis or ANCAs, I was being...

Dear all, After months and months of testing, and doctoring, I have come full c...

Canygirl61

•7 years ago

10 Replies

Vasculitis and flucuations

When I read many posts, there are people who are ANCA positive with no symptoms, and some with very severe symptomology and some in between. It seems that...

When I read many posts, there are people who are ANCA positive with no symptoms,...

Christophene47

•7 years ago

15 Replies

Relapsing polychondritis

Hello, everyone. I was diagnosed with MPA ten years ago and have recently had a nasty flare which has been treated with Rituximab but this time does not seem...

Hello, everyone. I was diagnosed with MPA ten years ago and have recently had a ...

trebar

•7 years ago

6 Replies

Side effects of Methotrexate

What are the side effects of methotrexate? Will it cause early menopause?

shanahamza

•7 years ago

4 Replies

Glycoprep C and CKD Stage 4

HI. I am due to have a colonoscpy procedure tomorrow morning (Tuesday 7am - Australian time) and have just commenced the GLYCOPREP-C to clean me out before the...

HI. I am due to have a colonoscpy procedure tomorrow morning (Tuesday 7am - Aust...

Macedon

•7 years ago

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ANCA TITRE

If you are positive for C-ANCA, is it the same thing as being PR3 positive? And does the titre number mean anything about disease activity ?eg. high titre,...

If you are positive for C-ANCA, is it the same thing as being PR3 positive? And ...

Christophene47

•7 years ago

2 Replies

Carotid endartectomy.... petrified...

Hi, my husband is about to undergo an endartectomy on his left side as he had a Tia last week which resulted in them finding out that his left carotid artery...

Hi, my husband is about to undergo an endartectomy on his left side as he had a ...

Ieuann133

•7 years ago

4 Replies

Any bowel problems with GPA?

Hi, for several months now I've had a change in bowel habit. Colonoscopy clear thank goodness. But the problem continues and have had a couple of episodes of...

Hi, for several months now I've had a change in bowel habit. Colonoscopy clear t...

ludo

•7 years ago

7 Replies

Cpan to pan???

Just been on my mind lately. How long or if my cutaneous pan will turn to actual pan? My question is .. is there anyone here who was diagnosed with çpan that...

Just been on my mind lately. How long or if my cutaneous pan will turn to actual...

greg31

•7 years ago

2 Replies

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for May 2018

MMP Mucous Membrane Pemphigoid...anyone else?

1st post any advice welcome

Ostrich Syndrome

How does vasculitis fit with Equality act 2010

In Praise of Vitamin B12..

Rituxan / Rituximab -- gastrointestinal side effects or coinciding viral infection?

Private consultation for vasculitis

FUNGAL INFECTION RISK FOR PEOPLE ON IMMUNOSUPPRESSANT DRUGS

Need advice on the disease

I'm New Here

Wengers granulomitsis

ON MY MIND

OPIATE PAIN MEDICATIONS IN ADDITION TO THE USUAL GPA MEDS ???

WHAT HAS BEEN YOUR EXPERIENCE WITH RITUXAMAB? HAS IT RESTORED YOU TO A SENSE OF NORMALCY WHEN ALL ELSE HAS NOT?

Rheumatology Today

GPA, Rituximab and chicken pox...

Exemption From Prescription Charges for Long Term Conditions Petition

Found Out One Thing

Emotional Reactions

Vasculitis

You are invited to participate in an important study about the effects of glucocorticoids (steroids).

Temporal Arteritis?

Vasculitis and flucuations

Relapsing polychondritis

Side effects of Methotrexate

Glycoprep C and CKD Stage 4

ANCA TITRE

Carotid endartectomy.... petrified...

Any bowel problems with GPA?

Cpan to pan???

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