New member in Delta, BC

[LisaT]

Hi everyone, I'm still dealing with either conflicting or dual diagnoses (rheumatoid arthritis and GPA), but it's looking more and more as though GPA is one of the culprits. I've had many health challenges over the years including fibromyalgia (which I now think could have been a misdiagnosis for RA which was smouldering and just not yet showing up in bloodwork), polymiositis (autoimmune inflammatory disease 20 years ago; in remission since a one-year bout of prednisone at the time), and now either GPA or atypical RA that looks like GPA. I'm on plaquenil, Imuran and a bunch of other meds and have been quite depressed and scared. Right now I'm in the midst of testing to figure out a 'structure' seen on a ct scan of my chest. After a two-hour MRI (can't believe I made it through without a panic attack), it was not clear and I have to have a gated ct of my chest for docs to get a better look. They've had it reviewed at UBC hospital and by 'the' radiologist in Victoria and nobody's sure but they're saying it could be 'previous granulamatous disease' or 'fibrosing mediastinitis' which sounds even scarier. They don't think it's a tumour but it could be. I'm feeling scared, angry, frustrated and as though my whole life is going to appointments and tests. I can't keep up around the house or with the needs of my kids (10 and 6; wishing we'd taught them to help out more; it's a work in progress), cancel social plans most of the time because I'm too exhausted, and am feeling like I'll never get back to work. But at this point that's the least of my concerns. I've been through enough that I now roll with the punches, but it seems that every time I adjust to a new reality, the universe has a good laugh, and WHAM, I'm hit with something bigger and scarier. I'm sure some of you can relate! I'm so relieved to have found this forum, a place where people understand what I'm going through. This can be very isolating and reading the posts has already been a huge help. I started writing a very lengthy intro and lost it when my iPad died. If I'm able to get it back, I'll post it in the 'stories' thread, which is probably the more appropriate place. My most immediate questions are, how do I know whether my rheumy and ENT are the right doctors (ie. they're good rheumy and ENTs but are they Wegener's specialists?), and how do I know whether the Imuran and prednisone are enough to control the disease activity? It sounds as though most on this forum are on at least one other medication. Weaning off the prednisone I've started to notice more throat issues and cough (I have subglottic stenosis), and I do NOT want to risk further breathing issues or choking episodes (scariest nights of my life... More details in my story when I post it!) Any advice or input would be greatly appreciated, and I would love to find someone in the area I could meet in person. I've been looking with respect to RA before the GPA diagnosis and have yet to find anyone. Thanks for this forum and all of the information. I have a feeling this will be my second home.

[windchime]

Welcome to the site Lisa. Sorry you had to find us, but you will find the most supportive, loving people right here. It sounds as like you are on a scary ride. It's important for you to have some emotional support right now and you will certainly find that here. This is an international site so there is someone around 24/7. Don't hesitate to ask questions, vent, or share a story. Check out the archives as there is a lot of information there.

My first suggestion would be to ask your doctors how many wegs patients have they treated. Also if you're close to an academic center, take your records and get a second opinion.

Medicine is so personal based on your situation that it's hard to say what is right for you. Especially since you don't seen to have a firm diagnosis. If you're becoming symptomatic while tapering your prednisone you may have to slow your taper down. When that happened to me I went back to the last dose where I didn't have any symptoms and started a slower taper.

I was recently diagnosed with fibrosing mediastinitis so I know why you're fearful. I don't understand why they are having such a hard time making a determination from the CT scan. At any rate you will feel better when they get around to figuring out what is going on with your lungs. It sounds like wegs to me from what you've written. The fibro could have been a misdiagnosis for the wegs also. That happened to me.

Why do they think it's RA if you have no blood markers for it? Have they done the ANCA tests for wegs? How are your other blood tests?
Sorry to come back with so many questions, but it puts us in a better place to help you.

I'm glad you're here. Here is a little hug from me to you.

[Dirty Don]

Welcome Lisa to the best little GPA blog on earth! LOL! But it's twoo, it's twoo! Anyways, you have been and are going thru a lot...sounds like much of it may be unnecessary if your docs don't know what to administer you and what doses. If you're on pred and still hurting, then it's too low...simple. I see you have other issues too, but pred usually only affects others like us with panic/anxiety in higher doses, and even then it's only arguing a lot with your spouse!! LOL! Well, part of it is. First of all, WG is controllable, but the idea is to get it under control quickly by knocking down the AI system...your drugs don't seem to be doing that well enough so I'd consider different or stronger. Your docs need to consult with someone who knows this business and isn't experimenting or trying things cuz their medical books said so...you need to get them to consult with someone or head to someplace who knows their business. Phil is the Canadian resident expert on who's around town for WG...he should tune in here soon. In the meantime, battle on with lots of patience and fortitude, this will get better. Best to you.

[jvilner]

Hi Lisa! I hear you!! I'm where your at. It's scary for sure. Someone just told me this disease is a known and an unknown at the same time. Those words gave me immediate comfort. Keep forging forward and deal with it as it comes. Sounds like you are doing just that! Best wishes!

[Michael Bell]

welcome to the group Lisa, take it one day at a time, and make it a good day.
Mike

[LisaT]

Thanks everyone for the welcome and responses. I am usually able to be fairly optimistic, and I will be with this too… I am in the adjustment stage. Cindy, I do have all of the blood markers for RA but am anca-negative, which is why even though many of my symptoms look like GpA I don't have a definitive diagnosis of it (actually I do from one doctor, the others aren't sure). I recently had an independent medical examination by a doctor hired by my health insurer. He was thorough, professional, unbiased and really knew what he was doing. So I'm anxiously awaiting his report to see what he had to say. He would have reviewed all of my records and scans, he spent three hours with me and did a very thorough history and examination (much more than my own rheumatologist has ever examined me..) So, if he thinks it's GPA I will be convinced. I'm not entirely clear on why they can't get a good look at what's going on from my scans thus far; however, the first one was a scan of my lungs on which the radiologist happened to notice the calcification near my heart and pulmonary artery. So it was an incidental finding. My lungs are clear other than some scarring from the polymiositis. The cardiologist thought that the cardiac MRI would give them a better look and nobody has really explained why it didn't. My hope is that it's shrinking, whatever it is! I had a new nodule on my lung that had disappeared on a follow up CT three months later, as had some abdominal lymph nodes, so maybe the meds were working and maybe the 'structure' near my heart is disappearing too. From what I've read though, certain types of things/tissue show up better on CT vs. MRI and vice versa (ie. the fact that they didn't see it clearly on MRI leads them to think it's not likely a tumour.) Cindy I'm sorry to hear about your fibrosing mediastinitis; how are you doing? How are they treating you? I do have anxiety and what seem to be anxiety attacks lately; does anyone on this forum not? I don't know how one could go through all of this and not be totally anxious. I'm working on calming down. I started yoga again for the first time in a long time, and am going to try to meditate more regularly.. I will feel calmer once I know what this thing is and how to treat it. Thanks everyone for your support. It's so nice to have found you!

[Jaypfei]

Hi Lisa

Welcome to the forum. Like everyone has already echoed...glad you're here, but sorry about the circumstances that brought you here. I've been a member since last August and still have not read all the posts, but like you, I found a great deal of comfort just from reading them, and knowing that I wasn't alone.
Hopefully your Drs can figure out what's going on very soon and can get you on the proper treatment.
Again welcome and keep us posted.

[annekat]

Welcome, Lisa. I'm not terribly far south of you, in Olympia, Washington, although I'm thinking of Victoria, since I don't know where Delta is. I have spent time in my life on the west shore of San Juan Island so may have looked across to where you are.

Everyone has expressed the important stuff, and with more knowledge than I have about the specifics that apply to you. So I just want to say I'm glad you found us am glad you are already thinking of the forum as your second home. That is a good description of how I feel about it, too. I hope you will feel less scared as a result of being less alone and in contact with those who care and can help you figure things out.

[windchime]

Hi Lisa,

The support here is what has helped me keep it together the last couple of weeks. Use us, we don't mind. Yes, anxiety is running high in my life right now as it does with most of us at one time or another. I too just started meditating again and releasing negative energy and filling back up with healing energy. Hope that's not too new agey for you.

If you do have calcified lymph nodes in your mediastinum they will not shrink with medication. It's encouraging to hear that your pulmonary nodule has shrunk.

[LisaT]

Welcome, Lisa. I'm not terribly far south of you, in Olympia, Washington, although I'm thinking of Victoria, since I don't know where Delta is. I have spent time in my life on the west shore of San Juan Island so may have looked across to where you are.

delta is half an hour south of Vancouver. Ferries to the island (where Victoria is) leave from close to where I live. My sister and her family are in issaquah, WA. Normally I visit her frequently but I can't cross the border for now until things settle down enough for me to get travel medical insurance... So for now, she comes to me. I know I see the signs for Olympia but haven't paid enough attention. Where is it in relation to Seattle?