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Cerebral vasculitis
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Has anyone taking cyclophosphamide suffered from tinnitus as a result?
I have CNS vasculitis and shortly after starting cyclophosphamide I developed tinnitus. I have had it for nearly 3 years now and I just wonder if it is a side effect of this particular drug?
I have CNS vasculitis and shortly after starting cyclophosphamide I developed tinnitus. I have had it for nearly 3 years now and I just wonder if it is a side effect of this particular drug?
LyndaGould
in
Vasculitis UK
13 years ago
Thoughts on neurologists letter
Sorry in advance if this is long winded he has listed the following as diagnoses:- SLE Anti beta 2 glycoprotein antibodies
Cerebral
vasculopathy (probably not
vasculitis
) Muscle cibtraction headache Diabetes Hypertension Patent foramen ovale (small) In the body of his letter he has put that
Sorry in advance if this is long winded he has listed the following as diagnoses:- SLE Anti beta 2 glycoprotein antibodies
Cerebral
vasculopathy (probably not
vasculitis
) Muscle cibtraction headache Diabetes Hypertension Patent foramen ovale (small) In the body of his letter he has put that
annie330
in
Vasculitis UK
13 years ago
Breast lump
My partner was diagnosed with Vasculitis in Sept 2011, a day before he had resp failure and spent 3 mths in ICU on a ventilator after pulmonary hemmorhage. Recently we've been told he has WG anca neg. He's doing really well on 30mg pred reducing to 25mg and 50mg aza increasing to 100 next week. Yesterday
My partner was diagnosed with Vasculitis in Sept 2011, a day before he had resp failure and spent 3 mths in ICU on a ventilator after pulmonary hemmorhage. Recently we've been told he has WG anca neg. He's doing really well on 30mg pred reducing to 25mg and 50mg aza increasing to 100 next week. Yesterday
louiseevs
in
Vasculitis UK
13 years ago
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Does anybody know why my newly diagnosed son would have severe shooting pains on the right side of his head? Elaine
He has been getting large lumps coming up and then quickly going on his head too. He is still having tests as the Vasculitis was discovered on a skin biopsy for the whole body rash he had. Thanks Elaine
He has been getting large lumps coming up and then quickly going on his head too. He is still having tests as the Vasculitis was discovered on a skin biopsy for the whole body rash he had. Thanks Elaine
Elainekay42
in
Vasculitis UK
13 years ago
Has anyone else had inflammatory incidents as a reaction to ending their steroid treatment?
I was diagnosed with
Cerebral
Vasculitis
in March 2008 and having had the usual steroid and immunosuppresant treatment, I have slowly improved. Last summer I started a final reduction of steroids and I took my last steroid on 9th Oct 2011.
I was diagnosed with
Cerebral
Vasculitis
in March 2008 and having had the usual steroid and immunosuppresant treatment, I have slowly improved. Last summer I started a final reduction of steroids and I took my last steroid on 9th Oct 2011.
LyndaGould
in
Vasculitis UK
13 years ago
Marathon Training blog for Vasculitis UK
My name is Jamie Flanagan. This year I'm going to be running in the Rome and Berlin Marathons raising money for Vasculitis UK. I am a Wegeners Granulomatosis patient and am looking forward to raising money and awareness to help beat this disease. You can read more about me at my Just giving page
My name is Jamie Flanagan. This year I'm going to be running in the Rome and Berlin Marathons raising money for Vasculitis UK. I am a Wegeners Granulomatosis patient and am looking forward to raising money and awareness to help beat this disease. You can read more about me at my Just giving page
jimdrum
in
Vasculitis UK
13 years ago
To what extent does Vasculitis complicate invasive surgery?
Sorry if this has come up before, I have been looking everywhere but I can't find much, certainly nothing relevant to the NHS. I am just wondering to what extent pre-exisiting Wegener's would affect a person's suitability for ( for instance) hip replacement or other invasive surgery of this type.
Sorry if this has come up before, I have been looking everywhere but I can't find much, certainly nothing relevant to the NHS. I am just wondering to what extent pre-exisiting Wegener's would affect a person's suitability for ( for instance) hip replacement or other invasive surgery of this type.
Hidden
in
Vasculitis UK
13 years ago
Should we be totally honest in declaring all the symptoms of our condition when applying for travel insurance?
i have been trying to obtain an affordable quote for travel insurance to cover a visit to my daughter in the USA. I have tried several insurance companies, including the ones recommended on this site but, if I declare every single symptom in response to their questions, the quotes are vey high - well
i have been trying to obtain an affordable quote for travel insurance to cover a visit to my daughter in the USA. I have tried several insurance companies, including the ones recommended on this site but, if I declare every single symptom in response to their questions, the quotes are vey high - well
Ayla
Volunteer
in
Vasculitis UK
13 years ago
Help now pregnant!
I have only recently been diagnosed with hypocomplement urticarial Vasculitis been on 20mg prednisone for 2 weeks just reduced to 15. I am about 5 weeks and can't get hold of my consultant. My GP was no help and told me to speak to my consultant. Can I just stop taking the prednisone? I don't want to
I have only recently been diagnosed with hypocomplement urticarial Vasculitis been on 20mg prednisone for 2 weeks just reduced to 15. I am about 5 weeks and can't get hold of my consultant. My GP was no help and told me to speak to my consultant. Can I just stop taking the prednisone? I don't want to
Fresita
in
Vasculitis UK
13 years ago
Are you able to work with vasculitis?
Up until being hospitalised and diagnosed with
Cerebral
Vasculitis
I worked as an English teacher in a secondary school. Since everything kicked off, I have been signed off work and deemed "unfit". I was wondering if people have returned to work, if so what sort of work (part time?)
Up until being hospitalised and diagnosed with
Cerebral
Vasculitis
I worked as an English teacher in a secondary school. Since everything kicked off, I have been signed off work and deemed "unfit". I was wondering if people have returned to work, if so what sort of work (part time?)
ShortSarah
in
Vasculitis UK
13 years ago
swellings on my arm with burning feeling, pain and numbness
My question is: has anyone else had or got anything like this and could it be related to my
cerebral
vasculitis
or is it more likely to be something else Eg: arthritis or something thats non related. Ps. . I think its also starting in my other arm and lower legs. Cor.
My question is: has anyone else had or got anything like this and could it be related to my
cerebral
vasculitis
or is it more likely to be something else Eg: arthritis or something thats non related. Ps. . I think its also starting in my other arm and lower legs. Cor.
sanromar
in
Vasculitis UK
13 years ago
Does anyone know where I can go in the U.S.? For Urticarial vasculitis?
I have been sick for a long time. Was told I had UV just this past June. Before that it sounds like a lot of other stories I have read. I was diagnosed with eczema. Than Lyme Disease. Than celiac spru. And finally UV. Now I am being treated at one of the most respectable places in the world but they
I have been sick for a long time. Was told I had UV just this past June. Before that it sounds like a lot of other stories I have read. I was diagnosed with eczema. Than Lyme Disease. Than celiac spru. And finally UV. Now I am being treated at one of the most respectable places in the world but they
geoscott0292
in
Vasculitis UK
13 years ago
Anyone else got experience with Cyclophosphamide?
Hi all, I am starting Rituximab soon and then got told today that I will be given Cyclophosphamide as well. I was handed a leaflet that mentioned extreme nausea and hairloss, but I don't know if this is just if you are on really high doses for cancer, so I was just wondering what side effects other people
Hi all, I am starting Rituximab soon and then got told today that I will be given Cyclophosphamide as well. I was handed a leaflet that mentioned extreme nausea and hairloss, but I don't know if this is just if you are on really high doses for cancer, so I was just wondering what side effects other people
Karen34
in
LUPUS UK
13 years ago
Marathon Blog 2
My name is Jamie Flanagan. This year I'm going to be running in the Rome and Berlin Marathons raising money for Vasculitis UK. I am a Wegeners Granulomatosis patient and am looking forward to raising money and awareness to help beat this disease. You can read more about me at my Just giving page below
My name is Jamie Flanagan. This year I'm going to be running in the Rome and Berlin Marathons raising money for Vasculitis UK. I am a Wegeners Granulomatosis patient and am looking forward to raising money and awareness to help beat this disease. You can read more about me at my Just giving page below
jimdrum
in
Vasculitis UK
13 years ago
Newly diagnosed with leukocytoclastic vasculitis
Not really sure what questions I want to ask. Feeling pretty calm after finally being diagnosed and knowing it wasn't all in my head. After having a recurring rash since June last year, being told by my GP that I had an allergy even though the rash didn't itch but burned when really bad and the
Not really sure what questions I want to ask. Feeling pretty calm after finally being diagnosed and knowing it wasn't all in my head. After having a recurring rash since June last year, being told by my GP that I had an allergy even though the rash didn't itch but burned when really bad and the
Fresita
in
Vasculitis UK
13 years ago
I was diagnosed with Wegener's on lst Feb following a chest xray (symptoms coughing and breathlessness and now my ears are popping).
II have had two sessions of cyclophosphomide and steroids and am seeing my consultant in two weeks time. My question is that I am seeing a Chest Consultant at my local hospital who has started my treatment. I believe that this is the standard treatment and so far so good. It seems to me that most
II have had two sessions of cyclophosphomide and steroids and am seeing my consultant in two weeks time. My question is that I am seeing a Chest Consultant at my local hospital who has started my treatment. I believe that this is the standard treatment and so far so good. It seems to me that most
Dillybean
in
Vasculitis UK
13 years ago
Hi every one. I am confused about dose of Azathioprine. My Chest Phys. says reduce the amount but Rheumatologist says not.
I have had Microscopic Polyangiitis for about two years which is controlled by 150mg Azathioprine per day, I finished taking steriods last March. I saw my Chest constultant and he was concerned about the size of my red blood cells being above normal and should reduce to 100mg which is the dose he gives
I have had Microscopic Polyangiitis for about two years which is controlled by 150mg Azathioprine per day, I finished taking steriods last March. I saw my Chest constultant and he was concerned about the size of my red blood cells being above normal and should reduce to 100mg which is the dose he gives
LynneJ
Volunteer
in
Vasculitis UK
13 years ago
Vasculitis and work
I've recently been diagnosed with vasculitis WG and I'm in sick leave since then .iv been discharged but I still feel unwell ( fatigue and pain ) . I just wanna ask people here with experience of the same disease will that feeling last long I mean will vasculitis keep me away from my job for awhile and
I've recently been diagnosed with vasculitis WG and I'm in sick leave since then .iv been discharged but I still feel unwell ( fatigue and pain ) . I just wanna ask people here with experience of the same disease will that feeling last long I mean will vasculitis keep me away from my job for awhile and
Abdul
in
Vasculitis UK
13 years ago
How do you know when to increase or decrease your steroids?
Although my
vasculitis
was not diagnosed as
cerebral
, from comparison with other people on this site it appears to be. It's onset was sudden with violent headaches and 4 days of intense stomach cramps, in Sept last year.
Although my
vasculitis
was not diagnosed as
cerebral
, from comparison with other people on this site it appears to be. It's onset was sudden with violent headaches and 4 days of intense stomach cramps, in Sept last year.
Bobs
in
Vasculitis UK
13 years ago
Diagnosis of vasculitis with a clear MRI
This question was asked on Facebook and I am really interested to see people's replies so would be grateful for any comments. Thanks Louise
This question was asked on Facebook and I am really interested to see people's replies so would be grateful for any comments. Thanks Louise
annie330
in
Vasculitis UK
12 years ago
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