November 2015 - new diagnosis

[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.....

[Middlesista]

annekat - thank you for taking the time to post - I have been reading many of your posts and appreciate learn g from your knowledge.

[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.

[annekat]

Great post, Max. Re biopsies: a lot of us got them even though our docs were pretty sure we had WG. When I was dx'ed in 2011, it was long enough ago that docs were still saying that a biopsy was essential for dx. In my case, my C-ANCA reading was very low. But my saddle nose developed right around that time, and since I wasn't a cocaine user or a syphilitic, and combined with my lung CT-scan results, it was pretty darn obvious! Still, I felt comforted to go into my ENT's office and show him the nose and a lump on my parotid gland. He biopsied both of those on the spot, there was no cancer in the gland, and the nasal biopsy was conclusive for WG. Nasal biopsies are notoriously not as reliable in that as a lung biopsy, but easier to do and go through, so I was lucky in that respect. It was nice to have official recognition of what was already pretty much accepted to be true. All that said, I think it is fine that docs are less insistent on biopsies and feeling more confident in diagnosing without them, if all other indications point to that.

[Birdie]

Was as the prednisone taper cause your vision issue or the prednisone in general?

Not taper related, pure pred, took a couple months. It was 80 mg for about ten months then months of up and down trying to get to a low dose. A couple months of that combined with cytoxin had me as desperate as before diagnosis.

So I suggest keeping a close eye on your vision (pun intentional). High dose pred can cause pressure on your eyes. Any sign of blurred vision or eye pain needs immediate, YES IMMEDIATE attention by a good eye specialist. My first eye doc started off jolly and relaxed. Her hands were shaking and she was yelling out the door to her staff after checking the pressure on my eyes. She had the girls up front making calls to other doctors/eye specialists until she found one who would see me immediately.

I went away from the second office/doctor with 8 or 10 different drops, about twenty pages of instructions, immediate appointment any time I walked in the door and last but not least, the doctors personal cell number. So, since you've already had eye issues... IMMEDIATELY... when you have a problem. Eye pressure that high and I heard the phrase "pop like a grape". No fixing that eye problem.

[debra]

Hi,just wanted to welcome u! I'm also from Boston originally,now living in nashua nh. I think Dale mentioned you're from Boston,sorry if I'm mistaken. Guess I should check facts first! I thought I did? Deb. feeling a little foolish....

[Middlesista]

Reading your info the RA maybe should have skipped the needle biopsy and then maybe I would not have had a hemothorax to deal with. I never had so many doctors looking at me but like u have all mentioned it was like I was a puzzle to be figured out. A few of the docs have treatedGPA but I am not sure if they are considered experts. I am suppose to have my second Rituxin treatment n Friday ( mentioning my fear in another thread which you helped calm me Max) I will ask if they consult with other experts.

Have to check out the Vasculitis Foundation - I did look through briefly but not as well as I should.

Thanks again Max

[Middlesista]

One of the RA docs did mention that nasal biopsy was not reliable and in fact mine was not positive after the sinus surgery from what I understood which is why he felt he needed the needle biopsy although my neuro-optomologist wants them to run it again

They moved ahead with the diagnosis due to other symptoms as you mention annekat - " if all other indications point to that ."

[Middlesista]

Geez Birdie - "pop like a grape" - not what anyone wants to hear about their eye!

i appreciate your insight and experience. Boy u have to stay informed and on top of this thing. I just get the feeling that when non GPA folks learn about it - it is more like sure glad it isn't me as they look at you sadly. I keep having to tell my family that there are treatments and we will get past this and move on.