GPA vasculitus

[35merlin]

Hi, does anyone on here gave GPA vasculitus? Just wanted to have a general chat as a friend has been diagnosed.

[hamble99b Volunteer]

I have. I'll be back sunday night. ask away, there's many on here.

regards,

hamble.

[AllyGY2013]

Hi,

I was diagnosed with WG/GPA January 2013. I suffer with my lungs, sinuses and joint pain mainly but the meds I am on help alot. I was on steroids at first but now take anti-inflammatories and immunosuppressant to keep the disease in check.

Check out my profile to view my history and see what questions etc I have posted. I find this site very helpful and please ask away. There are quite a few of us on here with GPA. Also have you checked out the site vasculitis.org.uk? See the routemap at the top of their page to find out more, it provides information on vasculitis types and and treatments, brilliant!

You can ask a question to all, as you have, or personal message someone, feel free to ask me anything, I'll answer honestly and help where I can, happy to discuss openly.

Ally

[Hidden]

Search for GPA and /or Wegener's in the box in the top right of the screen and you'll see a great many posts on the condition. There's also a wealth of information on the V-UK website at vasculitis.org.uk/about-vas...

If there's anything else you'd like to know then please just ask.

Healthy wishes to your friend.

[35merlin]

That you Martin. I'll have a look and think of some specific questions .

[35merlin]

Also thanks Ally. Yes I have seen the main uk website and the route map is good. My friends just been diagnosed and they're pretty sure it's GPA vasculitus but we have no more information at the moment so am trying to find out as much as possible. So are you in the remission phase Ally? How has it affected your lungs if you don't mind me asking?

[AllyGY2013]

You can ask me whatever you like I certianly don't mind.

I suffered flu like symptoms with sinus problems and persistent cough that just wouldn't go at the start and before I was diagnosed, I had loads of antibiotics but to no avail. The doctors orinally thought flu, then when I got a facial rash they decided lupus, then I became anca positive and saw a rheumatologist who changed diagnosis to GPA.

I get pain when taking a deep breath on my left side and have constant pain in my lower right side (back) from inflamed ribs/lungs. I get breathless easily but stay active as much as possible; my theory is use it or lose it so I keep going.

I guess I am as in remission as it gets for me. After a course of steroids I am no longer anca positive and I now take anti-inflammatories to keep the inflammation at bay and it does keep the joints relatively pain free too, I take an antacid to protect my stomach from the anti-inflammatories as I suffer gastritis and acid reflux and I take plaquenil to keep my immune system in check.

The doctor has suggested I have a rare form of arthritis too but this hasn't been confirmed.

I get good days and bad days but I definitely know the meds work because when I try to reduce them the joint pains return especially in my feet and ribs, my sinus and facial pain is excruciating and my sinus/nose bleeds and cough returns, my breathlessness gets worse and life is pretty miserable. With them I function almost pain free, my cough is at a minimum and life goes on.

Ally

[35merlin in reply to AllyGY2013]

Hi there. I saw your post a while ago. Just had a question about steroids. My brother is in hospital with GPA vasculitus and it's mainly affecting his testes they tried him in prednisolone but this seemed to make his pain worse. Wondered which steroids have helped you?

[AllyGY2013 in reply to 35merlin]

I was on prednisolone and gained alot of weight, was permanently hungry and was miserable, and although it did help a little with pain it wasn't enough for my rheumatologist to keep me on it, instead he took me off it and put me on plaquenil which is an immunosuppresant which seems to keep my symptoms at bay, but when my symptoms flare I add cerebrex or naprosyn which are both non-steroidal anti-inflammatories, they both antagonise my stomach so I have to take ranitidine to help with that but the good effects outweigh the bad and within a short time they help and I can stop taking them.

I have now stopped eating white bread, pasta, rice etc - and eat wholegrain foods, natural sugars (unrefined) and am reducing my gluten intake, all of which seems to be helping me as I have less pain and more energy.

I've just had a bit of a binge on 'the wrong foods' for me and I know it as my pain is quite bad, but I knew this would happen and chose to eat what I shouldn't because I fancied it.

Trial and error and keeping a food diary in which I wrote down what I ate and drank, then scored the day for energy and pain has helped me to see which foods affect me the most and what to avoid, I'm still learning.

Ally

[35merlin in reply to AllyGY2013]

Hi Ally, thanks for the info. Yes I think the drugs affect everyone differently so it's trial and error to an extent I suppose. So do you have GPA? Am guessing the better diet of whole grain and better foods has helped the inflammation?

[AllyGY2013 in reply to 35merlin]

My diagnosis is GPA with sjogrens, lupus sle and possibly raynauds and arthritis.

I don't know the theory of why the diet seems to work but it does so I'm not knocking it.

I met an friend of mine in town last week who I had lost contact with and she has lupus sle and has had a terrible time but by changing her diet she is off all meds. She is a vegan now and eats a gluten free diet. She also finds tomatoes are a problem for her. She is even returning to work and starting her own business now, after a long period off.

I guess everyone, ill or not benefits from eating healthily but I know that my stomach objects to processed foods as do my joints and muscles so for me it definitely helps.

Ally

[35merlin in reply to AllyGY2013]

Oh thanks will pass it on. V helpful

[Omil04 in reply to AllyGY2013]

Hi Ally yep GPA plus plus. Had chemo for 3mths but never achieved remission . Had first treatment of Rixtomal hopefully this will do the trick. I too get very breathless, which drives me nuts , as you would like to do just a little bit more ,but you cannot. I have to rest for a while, always making ajustments.

Sinus, nose bleeds and affected eyes and ears. Steriods been on high does , had infusions and now on 20mg daily. What can we do !! Just keep battling. Have a cold currently bummer. Hope we both get a easier few months. Regards lorr

[35merlin]

Hi. Oh thankyou. Do appreciate the info as I don't know much and real life accounts are helpful. Thanks again.

[chsskg]

Hi Merlin,

Sad old me, here on Xmas day but thought id test out my new laptop!. I am a relatively recent newcomer to the site having been diagnosed with GPA only two months ago. Im already getting a lot of benefit from this site and the people on here are wonderful. I am happy to share my experiences, fears, advice and maybe the odd pearl of wisdom but dont count on that last one too much. Its very early days for me but the medical people I have been seeing (Rheumy, GP, ENT specialist and Eye Clinc doctors) have been working mostly in concert and I feel well supported so far.

Regards

Chris

[Greenkit]

Hi, i have Weg's GPA and have been in remission for 2 years i do get flare up's but i know to get rest and just take things easy. Housework is the bottom of my list on days/weeks like this.

I have the lungs, nose, throat, eyes and joints affected, and had an hip replacement 2 years ago. In January i am having the other one done.

I still work full time can be a strain sometimes but i find it good to get out and mix with people. I do have to take time off when i dont feel good but i always say my health is more important than work.

I am on a fantastic Facebook page if anyone wants to join it is very informative and they also have a web page with loads of information from Dr's and people like us.

facebook.com/groups/Vasculi...

Best wishes to your friend XXX

[35merlin]

Hi Chris, yes this site seems a really place for sharing ideas , news, etc . Yes thanks, it's early days for my friend aswell. That's it, it seems quite a complex issue so a multiple team approach seems essential.

[35merlin]

Hi Greenkit, thanks will join the facebook page. Yes health is definately more important than work. Take care

[35merlin]

Hello, wondered if anyone had experienced any link between steroid use ( medicated use obviously ) and pain in the groin area?