Anca vasulititis

[Christina1960]

My fiance was diagnosed with Anca vasculitis in 2014. Can one be in "remission" and still have mild symptoms?

[jackrussell]

Without going into the long history of my Vasculitis, I personally have some symptoms most of the time, I don,t think it ever really goes away,it " hovers ". Most of the time the symptoms can be lived with, at others it can make one feel quite down, and be troublesome. But like a good many of us we soldier on ,hoping that the symptoms we are getting are not going to turn into a major flare,and at that we are ( for want of a better word ) grateful.Of course we must always be watchful so that we can get help ,if and when required. So in short I do think it is more than probable that in remission we can have " symptoms".

[Christina1960 in reply to jackrussell]

Jackrussell, Thank you so much for your reply. It helped clairfy things for me. Do you also have ANCA mpo?

[michichgo]

Hi Christina1960.

I was diagnosed with MPA two years ago and based on lab work, I've been in remission for the past 6 months. I must say, I don't feel as though I'm in remission. I suffer with terrible bouts of fatigue and my inflammation markers are still elevated. Numerous joints are painful but MRI's reveal nothing is wrong (not even arthritis). Even my ribcage hurts nearly constantly.

Recently, there was a Vasculitis symposium held in Jacksonville, FL by the Vasculitis Foundation (I'm in the U.S.). Some of the leading experts in the field apparently stated that patients with ANCA Associated Vasculides (AAV) may suffer symptoms of active disease without raised ANCA numbers. I've yet to find this in writing.

Such a theory would explain why some folks feel ill when they've been deemed to be in remission.

Healthy wishes to you and your husband!

[Christina1960 in reply to michichgo]

Thank you for writing Michichgo, i really appreciated your reply. How do you find out about Vasculitits symposiums? Is there a site i could go on? Im also in the US. We live in Pa.

I'm sotry that you don't feel well. I hope you start feeling better. I've read a lot about timeric..it's suppose to help with inflammation. I wish you Health and Happiness.

[michichgo in reply to Christina1960]

I've found a few helpful resources, including vasculitisfoundation.org.

You can search by disease type and from there search for specific symptoms.

If you're on Facebook, there are also private health groups you can join. For example, I belong to the group Vasculitis Foundation, as well as the MPA group (my specific type of vasculitis-microscopic polyangiitis).

It is through online forums such as this that you can find others experiencing similar issues. Physicians don't always have answers in dealing with rare diseases.

[Christina1960 in reply to michichgo]

Wow!! Thank you so much Michichgo!!! That was very informative!

[Rowmarsh]

Yes you can absolutely. I have a whole range of legacy side effects from Churg Strauss Syndrome such as tiredness, lethargy, flu-like symptoms, hearing loss, tinnitus and sinusitis. Don't be fooled into thinking it leaves. Even if you are in remission and feel well it can still continue to cause problems.

I have other complications related to vasculitis but I will not mention here. But one thing I will add is that ANCA negative needs to be treated very carefully as patients are prone to heart complications with ANCA -ve

[Christina1960]

Rowmarsh, thank you for answering my question. I never heard of Anca-ve..why does this disease have so many names? Is that the same as Anca mpo?

I'm sorry that you're still not feeling well.

[Justjudes3824]

Hi Christna I was diagnosed with Wegeners/ Microscopic Polyangitus in 1998 and have had 3 flares but have been in remission for some time now however I do have a persistent cough and sinus problems which I think I will always have. I lead a normal active life speed walking going to the gym and cycling and as I am 77 I guess I can't grumble !! I hope your fiancé will continue in remission with out too many problems . Judy Franman15

[Christina1960 in reply to Justjudes3824]

Fran15man, Is Wegeners/Miscrosopic Polyangitus similar to ANCA mpo? There's so many names for this disease...very confusing. I'd ask my fiance..but he really doesn't like to talk about it...which is why I'm on here and he's not.

You're such an inspiration!

[Justjudes3824]

Yes it is simela some consultant 's call mine Wegeners and some Polyangitus both are anca mpo I have a really good group of consultants at Dorchester Hospital where I went when I had kidney failure and they keep a good eye on me. I am taking steroids 2mg azaathioprine 25 mg and 2mg blood pressure tablets also septrin 3 times a week but at least they all keep me going Hope that is helpful Judy

[Christina1960]

Thanks Judy, i really appreciate you taking the time out to answer my questions. I wish i knew about this site last winter.

How are your kidneys functioning now? Do you have any permanet damage? Before Don knew he had this disease he was going into kidney failure..he had to go on dialysis for a few months. Last February we were told his kidneys are functioning at 33%....which they could function like that for a long time. They seem to be doing OK now, but a transplant isn't out of the question in the future...due to "burn out" It's a concern of mine and I was just wondering if you r kidneys have also been chronically damaged.

Btw: he was just diagnosed in March 2014. This is still fairly new to us.

Thanks,

Christina

[Justjudes3824]

Hi Christna my kidneys are really good now for my age I was on dialysis while in hospital and I had 6 plasma exchanges after which I was ok The hospital keeps a careful eye on me with blood tests every few months. I hope your fiancé keeps making progress I felt very worried and confused when I came home but soon got to accept that life had changed and would be on medication for the rest of my life. It must be difficult for you as it was for my husband who was a great support as I am sure you are Take care both of you Judy

[ccnash]

Hi Christina

I have MPA Vasculitis and I live outside of Philadelphia, PA

You can contact me at [e-mail]. I can give you some local recomendations

[Christina1960 in reply to ccnash]

Thank you ccnash, I just sent you an email from [e-mail] I look forward to hearing from you!

[Christina1960 in reply to Christina1960]

Ccnash, I'm having trouble with the above address so I'm sending you another email from a new address [e-mail] don't want you to think it's spam.

Thanks!

[Christina1960 in reply to ccnash]

Ccnash, I'm having trouble with the other email address I sent you so I'm sending you a email with another address. [e-mail].

Just making sure youll reconize it and not think its spam.

Thanks!