New and a little nerveous

[Terri H]

Hello everyone,

I almost feel foolish looking for a support group for this disease, at this point in my progression, but I'm scared. My symptoms don't compare in anyway to those that are described by some of you. You are all very courageous.
Perhaps I am one of the lucky ones, as I was diagnosed before this disease went too far. So do I even have it? I guess I won't know for sure until the disease progresses and a biopsy can be done to confirm it. My rheumotologist says we need to assume I have it based on my symptoms, blood work (sed rate, c-reactive protien, ANCA etc) and keep a watchful eye on its progression (monthly blood work and urine testing). I am finally down to 5mg of prednisone (after 8 months) but I still feel the fatigue and the exhaustion leaves me feeling inadequate. I have so much to do!! The aches and pains in my joints are still there, it is often difficult to even walk from one location to another. My inability to move is not just from my joints, it's from every part of my being.My breathing often becomes labored when I go up and down the stairs. It is so hard to understand. I also get shooting pains in my feet and hands but my doctor doesn't think it has to do with Wegeners. The bottoms of my feet hurt at times when I walk. Sometimes I think I am going crazy, like this is all in my head. What makes matters worse is that I am having a difficult time explaining this to my family. If I tell them I have "Iristis" (inflammation of the eye, which has subsided) or inflammation in my ears (with fluid and loss of hearing), they seem to understand, but the overall diagnoses of GPA is not one they are able to grasp. I am TIRED all the time! I have 6 grown children and 10 grandchildren. Several of my kids, don't see me as sick on the outside...so they think I am fine to ask for a lot of help with their kids. Don't get me wrong..I love my grand-kids ...they are everything to me, but it so hard to describe the way I feel to them and my own children. I pray I can stay ahead of this disease and never experience what some of you have gone through. I admire your willingness to share your journey and I would appreciate any support I can get from this group.

Warmly,

Terri

[MaxD]

Terri, everything you describe is consistent with vasculitis. Have you, or your rheumatologist, consulted with a specialist? You can get a list from the vasculitisfoundation.org website for specialists near you. This disease can go undiagnosed for years. Nowadays biopsies are not necessary for diagnosis if all other indicators (ANCA, red eyes, joint pains) are strong. Also, while prednisone can mask the symptoms, it is not a cure. It is not necessary to see if the disease progresses - if you have it, it will progress. So best to get a diagnosis. Please do set up a consultation with a specialist.

Keep in touch, and good luck!

[Geoff]

Hi Terri, first and formost please stop beating yourself up. This illness can drive you crazy with its various symptoms. The pain you describe to your hands, feet, joints etc are similar to what i have experienced. Your shortness of breath and fatigue give me cause for concern.
8 months since you started steroids and no clear diagnosis yet. It seems odd you have been told to taper and yet no other maintenance drug has been prescribed.
As Max has stated, you need to see a proper WG consultant and get your treatment onto a proper sound footing.
Posting on this Forum could be the start of turning things around for you, and i hope you take the appropriate steps to ensure that this happens.
You have a large family unit to help you, make sure you keep some energy back for yourself. Keep us posted Terri and rest assured we are all here for you.

[mishb]

Hi Terry and welcome to the forum.

Don't feel foolish about joining a support group, we are a fun bunch, and beside that - it's just good to know that you are not alone in this new journey.

I second what the boys have said. It certainly sounds like a vasculitis condition and you do need to find a doctor that specialises in WG

Can I ask where in the world you are from

[Mas78]

Welcome to the group, I hope that things get straightened out for you soon. You've been given some good advice so far. Be sure to ask whatever you want as someone will relate and give you more advice.

[godgirl]

Don't feel foolish, Terri about looking for support here. Seriously.

I'm in the same situation as you are. I started with scleritis (eye) and went to hearing loss, and now have pain in my ankles/feet and my new doc is concerned about my kidneys. But I'm not diagnosed. Even with the ANCA and c reactive protein tests... And I'm certainly not nearly as bad as a lot of people on this forum. They caught this early for me, too. And yeah, like you, I feel like the only way I'm going to get a diagnosis is when it progresses further. That is SO frustrating.

I am concerned for you, though. Even though I've been undiagnosed for about a year and a half, they've got me on methotrexate injections (25mg) as well as prednisone (currently at 8mg). No diagnosis, but they want to try to stop "whatever it is". I'm concerned that they aren't treating you at all - except with prednisone. You should be treated for it if they're pretty sure GPA is what you have.

And we all understand about the fatigue. It's terrible. Just, simply, terrible. I am 44 and divorced. I HAVE to work. And it's a struggle to get out of bed some days. Most days, I come home from work and have to lie down for about an hour. Not necessarily sleep, but kind of recover from the day.

Hang in there. It's difficult. And MaxD is right, get a specialist. I spent just over a year with one doc, and a couple of months ago, went for a second opinion. This one seems to know what he's doing. Not that the other one didn't, but, well, she wasn't taking my symptoms seriously as I thought she should. So, I talked to her about it, and she sent me (in network) to one of her colleagues. He did some tests she hadn't (c reactive protein in particular) and what do you know? It wasn't all in my head. He upped my methotrexate and started some other tests. And they came back wonky. So we're repeating them next week. I guess what I'm trying to say, is that if you're not getting answers, or feel lost, you need to advocate for yourself. You can find plenty of support on these boards for that.

Keep us posted, Terri, ask as many questions as you want, vent all you want, and know that you're not alone in this.

Jen

[HopeCourage]

Thank you to all who have welcomed me to this site. I can't tell you how much it means to me. In fact, your comments have motivated me to reach out to the head of rheumatology at the health system I am receiving care from. I'm hoping they will reassign me to a rheumatologist specializing in WG. Again..thank you!
Terri

[Terri H]

Michelle,

I live in Southeast
Michigan - USA
I am being seen through the U of M Rheumatology Department.
I would love to connect with people who live near me!

Terri

[Terri H]

MaxD,

Thank you for your kind words! I am in the process of setting up an appointment with a specialist that has more experience with WG. Thanks for your advice!

[annekat]

Welcome, Terri! !t sounds like people are getting you on the right track. I think there are forum members who not too far from you who can help you with finding resources in your area, and if you can meet them face to face, so much the better! I'm so glad you found us. I've been here since a few days before my diagnosis and so have never been alone with this disease. It took me some time to get the nerve to post, but meanwhile, I learned more by "lurking" than any doctor ever has time to tell me, if they even know anything. I have had a lot of the same issues as you do, including the pains in my feet, which ARE related to WG, I have no doubt. And the sinus and ear issues, joint pains, and crushing fatigue, which will improve with proper treatment. You do need a definite diagnosis so you can be put on an immunosuppressant such as CTX, MTX, or RTX (you'll see those a lot on here, among others) in addition to prednisone. Use the search function to find out about meds and other aspects of having this. I've had fewer problems than many, but there can always be more severe involvement in the future, so we must be vigilant about testing, consulting with docs, healthful diets and any exercise we can get, to keep the vital juices flowing and catching any issues early. Many of us are doing very well. Take it one day at a time, but do get some specialist care and stay in touch with the forum on a day to day basis. There are also vasculitis groups on Facebook, or we can just "friend" each other there and shoot the breeze about all kinds of things in addition to our illness. We are here for you! Things will get better. Keep us posted.

[whatthewhat]

Terri, welcome. One of the pernicious aspects of this disease is how incredibly individualized it is. Even tests results to some extent - numbers are not as cut and dried as other diseases. One thing I appreciate about this forum is there is unconditional support - people are truly happy for good health and there's just no hint of competition one way or the other.

I agree with what has been said. WG advances, sometimes quickly and sometimes slowly, and Prednisone doesn't slow the advance. And I am so glad to read you are looking into working with another doctor.

A word about the foot pain: my daughter (dxd at age 14) had severe foot pain at diagnosis, and the docs said neuropathy is common with Wegener's. Her left foot is still wonky, two years later.

All the the best to you, Terri. You've found a wonderful resource here with this forum, and it sounds like you have the mindset to fight this. :-D

[Breezy]

Hi Terri,

I hope you can get a diagnosis and the right medications (besides pred) soon. I've been lurking on this forum for a few months and I can say without question that everyone here is really supportive and willing to offer advice and help whenever they can.


Bre

[vdub]

Welcome to the forum! Sounds like you are right on track for how this disease progresses and lingers. 21.Apr will be 5th anniversary for my dx and my legs still bother me (they are hurting right now as I'm sitting comfortably and writing this and its been an hour since I took my pain meds) and I generally feel tired. If I get a good 2 or 3 hrs of doing something active during the day, then its a good day. I can still function, but its very annoying. The things you are going through aren't uncommon, but they certainly are a PITA! Best of luck to you. You can rant here all you want.

[BookNut]

Children...adult or otherwise...who have experienced little illness in their lives just do not understand.You will find a great deal of help and good advice here. I would repeat what others say and keep pushing to get a certain diagnosis and get started on appropriate meds. Practice saying no firmly when it comes to your children. if you are not well...it is not only bad for you to push yourself, but it is not safe for your grandchildren to be in your unassisted care. I don't have wegs. i have severe asthma. My baby granddaughter was with us over the weekend. We wanted to give our daughter a fun night out..so my husband and I babysat. My husband is getting over a complicated broken collarbone, so I had to do at least some of the lifting. I was not well to begin with, so I should not have done it. It wore me out completely, and three days later I was in the hospital. While we were taking care of her that night, I realized that it would not have been safe for either my grandbaby OR me if I had to take care of her all on my own. So...perhaps you can approach this from that point of view. Also...next time your children comes down with a bad flu, let them know this is how you feel a large portion of the time. good luck!!

[Debbie C]

Hi Terri,now see aren't you glad you joined our "sick" little family. We are really close here as you will find out, sometimes it seems like I am closer than my own family because everyone here knows what we are going through where people without the disease just don't understand. Like the saying goes "But you don't look sick " You definitely have all the symtems of wg. You may also want to get a pulmonary dr.to get a scan of your lungs and do a breathing test.But if you get a good reumy ,he can order that. I don't know how far from the Cleveland Clinic you live but there are a few of us in Ohio that go there and the drs are excellent. You may even be able to get a consult from 1 of them with your dr. Keep us posted and we are hear to listen and help at anytime.