November 2015 - new diagnosis

[Middlesista]

Discovered this informative site and wonderful people when they first mentioned the diagnosis of GPA during my recent 11 day hospitalization. Came home last evening!!!

A little background - I am a 60 year old RN, working full time and living my life. I do wonder if GPA has been "smoldering" in the background because of abnormal inflammatory markers for a very long time. They did a "work-up" but found nothing and I even saw a RA and thus was years ago

About two years ago lost the hearing in my rt ear assoc with vertigo - MRI done told it was probably viral and to live my life. No other specific symptoms but as I read everyone's story I see subtle hints of GPA. Would feel hot but no temp, HR would increase and feel a little SOB and Sats would be in low 90,s but attributed that to being busy and rushing -no biggie, or so I thought


Oct of this year wicked sinus issues - ear acting up so went back to ENT. All well. Few days later developed unilateral eye pain - saw eye doc - all looked well. 3 days later vision very bad in left eye, back to optomologist - referred to neuro - optomologist. Testing done - felt might be due to sinus infection, had sinus surgery , steroids and vision back thought all was well and suppose to go back to work. When tapering off steroids for what was felt to be optic neuritis vision got bad again so they restarted prednisone and a few days later while tapering down again totally loss vision in left eye - told to head to hospital and went in the Thursday before Thanksgiving and after a lot of testing an a complication where they cut through my intercostal artery when doing the lung biopsy a sx of GPA diag was made due to Blood work and my presentation.

Had my first dose of Rituxin which they explained reasons for and 1000 mg Solumedrol X 3 doses plus one more dose due to vision getting a bit blurry again. I would be lying if I did not mention how scary this all is as you all well know - the rituxin especially scares me although I red that the side effects are most prominent after 1st dose and go,down with each subsequent dose- if I read that correctly

On 60mg Prednisone with slow taper. On bactrim and usual meds. Have home oxygen now due to lung issue but I am hopeful that will get better.

Sorry for for just a long post - I have been reading the board and am so appreciate,I've read of all your info and would love to learn more


Sorry for a my typos also.

[renidrag]

Welcome, as you know there are a lot of knowledgable people here. I can't talk to sinus issues as I presented in lungs only, so far, but others will be along soon with info and support.
Dale

[MaxD]

Middlesista,

Sorry to welcome you to our group. The loss of vision must have been very scary indeed. The lung biopsy couldn't have been pleasant, nor the complications from cutting through an artery, horrors! I'm surprised that with your symptoms blood tests (ANCA) and a chest CT scan were insufficient for diagnosis - perhaps you were ANCA negative? A biopsy was considered definitive until a few years back, but many GPA experts do not consider it necessary nowadays if symptoms, blood tests and scans provide enough evidence. Good that your docs caught it before it affected other organs.

Anyhow, it's good that you have started Rituxan therapy. Many of us on the board have gone through it with no noticeable side effects. All the warnings are so scary, aren't they? But all serious adverse reactions show up as the first dose is being administered (not afterwards), so you should feel confident about the next 3 rounds. After my first 4 rounds of Rituxan, I tapered off the prednisone after 9 months. I get one infusion of Rituxan for maintenance therapy - had one about 10 months after the first round. That was last March, and I'll probably have another within the next few months. Some docs give one dose every 6 months. My docs monitor my peripheral B-cell count (using flow cytometry tests) and give me a dose when it increases above 0.

Know that you will recover, but give your body time to recover from the disease and then the prednisone. Stay in touch, and feel free to vent and ask any questions.

[Pete]

Hi Middleista,

Welcome to the club. Sounds like you're getting competent care. Many GPA/wegs patients get rituximab to induce remission. The high dose steroid and bactrim are also normal protocols.

I had some sinus involvement at onset. It's pretty much healed over the past several years. I take loratidiene 10 mg daily and Phenylephrine 20 mg daily to keep the nasal tissues calm. I also rinse my sinuses with saline as needed. Others with more extensive sinus involvement rinse more frequently. There are additional threads here regarding sinus rinsing. You should also discuss rinsing and OTC meds with your doc.

Where do you get treated for wegs?

Keep us posted! Good luck.

[Middlesista]

Hi Pete - my sinuses were ok - it was mostly the eye and then they saw the lesions in my lungs. They tell me my kidneys r in pretty good shape - just getting out of hospital yesterday and being overwhelmed withappointments and what not I still have to gather info. I am hoping once the hemothorax is better I will be feeling and doing better breathing wise and will not be hooked up to oxygen At a teaching hospital outside of Boston and the RA has other WEG patients. Interestingly it was the neuro-optomologist that was paramount n helping figure this out and I am so grateful to her

thank you for all you help and support

[Middlesista]

Max - thank u for your response and Info on rituxin - both of my ANCA's if I am understanding this correctly were strongly positive.

I know now I am getting ahead of myself here but r folks usually able to go back to work?

interestibg what u wrote about biopsy - thought it was mammoth in making diagnosis

thanks again

[Pete]

I know now I am getting ahead of myself here but r folks usually able to go back towork?

The short answer is "probably". There is a weggie who has both climbed Mt Everest and run the Iditarod a couple of times. Being in health care with a compromised immune system is something to discuss with your doc.

I retired 9 months before disease onset. It was probably 4-6 months after dx that I felt well enough to even think about resuming normal activities -- and I eased into them slowly. I now walk 2-3 miles several times a week and do some light resistance weight training once or twice a week.

Good luck!!

[annekat]

Hi, Middlesista, and welcome to the forum. Don't know what I can add to what has been said. Since you are in the Boston area, you are probably in good hands. One of the best things about this forum is not feeling alone with our disease. It would be so much scarier otherwise. Following the forum every day since late March 2011, when WG was first suggested, has saved my sanity and peace of mind. The people on here are of the highest caliber and have been through many different variations of WG, with a common thread running through. We love long posts, questions, rants, whining, the whole works, and almost everyone, while starting out knowing nothing, will be able to help someone else eventually. This forum is a beautiful place to be, if one must have such a crummy disease. All the best to you, and please stay with us and let us know how things go.

[Middlesista]

Pete , you are correct, Being a nurse does give me pause due to what we are exposed to every day. one doc did not think it was insurmountable - but I am not to sure how realistic it is.

Just so many unknowns.....

[MaxD]

Max - thank u for your response and Info on rituxin - both of my ANCA's if I am understanding this correctly were strongly positive.

I know now I am getting ahead of myself here but r folks usually able to go back to work?

interestibg what u wrote about biopsy - thought it was mammoth in making diagnosis

thanks again

Yes, given that you were diagnosed in time you will be able to get back to work once you recover after hospitalization. In fact, the prednisone may make you feel like wonder woman, with extra energy. But as you taper down, you will feel more easily fatigued and more achy. The best advice I got (which I should have followed more closely) was to get some regular exercise - i.e. walking a mile or two daily while on prednisone. As an RN you're probably on your feet a lot and get more than enough exercise - so be sure to make time to rest your feet every so often! It took me 6 months after stopping prednisone to get my energy levels back up to normal.

Yes, you're right that biopsies used to be considered necessary for diagnosis - but not any more, not by GPA specialists. I remember when my rheumatologist diagnosed me but the pulmonologist and another doc kept insisting that that wasn't possible without a biopsy. The pulmonologist was repeating what she had learnt in one lecture in medical school. Nowadays, GPA specialists don't consider biopsies essential if other factors are strong indicators.

By the way, if you haven't come across it already, the Vasculitis Foundation web site has a wealth of information, including specialists etc. If you're close to Boston, you couldn't ask for a better place to be! But as everyone on this forum recommends - if your doc is not a GPA/Vasculitis specialist, make an appointment to see one and they can coordinate care with your docs. You're clearly in good hands, but maintenance therapy is an art, constantly changing with new meds and ongoing trials, and if you can get an expert involved, that will be reassuring.