Diagnosed January 2009

[Erika]

Hi everyone. I was diagnosed with limited WG last month after about 15 years of questions, maybe more. Starting when I was about 10, I had awful pains that would prevent me from walking, debilitating migraines and a host of other issues. It wasn't until I was 16 and started coughing up blood that they found three nodules on my right lung. They were removed via a wedge resection and no diagnosis was made, but Wegener's was suspected. Things got better, but since that time I've constantly had aches and pains that were unexplainable, headaches and extreme fatigue (and also a few episodes of coughing up the staples from my lung surgery!). Then last February, I was 7 months pregnant with my first baby and started coughing up blood. A CT scan showed another nodule on my lung. Same thing - wedge resection to remove. Pathology and extremely high ANCA result points to WG. But my rheumatologist says I have WG, but since I don't have any other symptoms at the moment, they don't want to start treating me yet. He says if my ANCA goes up anymore, they will want to start treatment, or if I have any other symptoms in the meantime.

So now, I guess I just wait to see what happens next, which is a little disconcerting since it could be anything, right? And I have some questions I was wondering if any of you could answer for me. When and if I do have to start the medication, how much did it impact you? Were you out of work? Able to take care of your children? I'm petrified that I won't be able to do that when they have to start treatment, whenever that may be.

I'm just really happy I found you all, since I don't think my husband quite gets how scary it is to have this diagnosis looming over my head and not knowing when I will have to deal with it.

Thanks for listening!

[Sangye]

Hi Erika, nice to meet you. I'm just making sure-- you mean you've got Wegs and no one is treating it? Just waiting to see what will happen next? Are they kidding? You must get to a Wegs-literate doctor. Do you need help finding one?

Also, it'd be great if your husband would read some of the stories on this forum, too. Since your doctor isn't taking the Wegs threat seriously, it's understandable that your husband might not be, either. Just needs more info.

[andrew]

Hi Erika!! 15 years??!!! That's amazing. So am I rading this right when you say that your doc has diagnosed you with WG but doesn't want to treat it? I'd see another doc if I were you. The earl;ier you get treatment, the better the treatment will be.

And I have some questions I was wondering if any of you could answer for me.

Ask anything, any time and we'll do our best to answer them for you.

When and if I do have to start the medication, how much did it impact you?

HArd to answer as everyone is different. Depends what meds you are put on and what the doses are. Typical 'startup' meds are Cytoxan and Prednisone. These can have some effect but again, depends on the dosage.

Were you out of work?

Many were and still are. Others, like myself, were out of work for a few months while in hospital and recovering but after that, manage ok with a job.

Able to take care of your children?

I'll leave that to someone with kids

I'm petrified that I won't be able to do that when they have to start treatment, whenever that may be.

The key thing is to stay within your limits and not overdo it. You may be ok, you may have to pace yourself. I suggest erring on the side of caution and pacing yourself.

I'm just really happy I found you all, since I don't think my husband quite gets how scary it is to have this diagnosis looming over my head and not knowing when I will have to deal with it.

We're happy you're here too! Feel free to ask anything. Others will be able to igve a more detailed reply re: meds and kids. We're a family here and you're a part of it now

[andrew]

Also, it'd be great if your husband would read some of the stories on this forum, too. Since your doctor isn't taking the Wegs threat seriously, it's understandable that your husband might not be, either. Just needs more info.

Yuh huh, agreed. Get him to read a few of the member's stories.

[Erika]

Thank you both so much for the quick replies and advice! You actually read some of my thoughts about getting treated sooner rather than later. My doc has some experience with Wegener's, but he's atually working in conjunction with another doctor in Boston who has had TONS of experience with WG, according to the research I've done. So i'm not sure what to do - this whole thing has been pretty confusing. I think my rheumatologist's reasoning is that he's told me to call him if ANYTHING is abnormal (cough, rash, anything) and we can start then, or if my ANCA is up at my next appt, start treatment then. He has me scheduled every three months for the gamut of blood and urine tests, so what I thought is that when my next appt rolls around in April, I'm going to go to him with a list of questions, including the one asking him if we should be treating now BEFORE i get more symptoms instead of waiting. Do you think that's a good idea or should I be being more proactive now? It's hard since I actually feel relatively good now, but I know that can change so fast...

Thanks again - it really is great to be able to talk to some people who are going through this as well. And you're right about the hubby - I need to be proactively giving him information, as well...

[Sangye]

Well okay, I'm a little confused (more than a little if you start counting other areas of my life ). What symptoms are you having at this point? In your first post it sounded like pain, headaches and fatigue are ongoing, making me scratch my head as to why they wouldn't be treating that.

[Erika]

No, you got that right! I'm the one that's confused I do have the headaches and fatigue ongoing, joint pain not so much right now, but that's on and off lately. I think I'm so used to it all, though, that it's become such a normal part of my life and i don't blink an eye at it... does that make sense?

[Sangye]

It's tough to tell if you're actually in remission, or close enough not to need meds. It may be that your rheumy is indeed working closely with a Weg's expert, and that is the expert's advice. It could also be that you're not getting clear answers from your rheumy.

Because I had no comparison, I thought my first rheumy was fine in the beginning. When he confirmed the diagnosis and explained the treatment, he even offered, "It's fine if you want to get a second opinion, like at Mayo Clinic or somewhere where they treat Wegs a lot." I lived in northern Arizona, and he was the only rheumatologist within 3 hours. I was extremely sick--half-dead, actually-- so had no idea where to begin seeking a second opinion. I thought his comment indicated he was open, humble and willing to be wrong. My gut told me differently, though. And my gut was right.

He was unbelievably arrogant, incompetent and negligent in my care. Within a couple weeks of beginning treatment, we discovered I was filled with blood clots. He panicked, blamed me (!!!) and when he was done with those, he told me he spoke with an expert at Cleveland Clinic who said clots can happen with Weggies. You'd think that would have humbled him or something. But it seemed to deepen his aggravation. When I got repeat clots and an endless stream of complications, he stopped answering my messages altogether. I was left without any care for several months, until I finally got myself to Mayo. I had very active disease, and my rheumy at Mayo was horrified at the care I'd received.

I tell you this, Erika, because given what you've said it's difficult to know what to advise you. You'll have to do a gut-check of your own, I think.

You might decide to get a direct consultation with a Wegs expert at one of the major institutions that have Wegs specialists. That's a good idea, and they can guide your local doc in your treatment.

[Twice]

Hi Erika,

You might find this list useful.

Sx

[jola57]

Hi Erika, it would be hard to let you know what kind of care you are getting without knowing all your test values and symptoms. 15 yeaars may seem like a long time but this disease is so strange to begin with. Migranes, I know quite well how it feels, I started to have them when I was 17, they soon progressed to full blown migranes with occular aura, tingling and parasthesis of one side of face and hand and fingers. Of course all of my doc's (i moved to 3 different cities since then) classified it as regular migranes. I was always cold, tired, had sleep disturbances. In retrospect adding that no one ever checked my thyroid (I found later when I was 27 I was hypothyroid and have been on synthrioid 0.15 ever since) or do a complete blood analysis beyond the normal. Muscle pains just became my norm so it never bothered me enough and my sometimes complaints to docs were dissmissed. Years ago, about 7 or 8, I insisted on getting a contrast scan of my bones because my shoulders and hips gave me so much problem. It revealed hot spots but I guess not enough for a follow up.
This disease has been in my body for who knows how long but looking back probably for the past 25 years. Would treating it back then help, I dont think so as ther is no cure. Only when it culminates in you not being able to function or are gravely ill will steroids and cyclophosphimide help.
If you are functioning OK and your doc knows it is Wegeners, keeps an eye on it, go with what your body tells you. I am now 52, have brought up two boys, work full time all the time, keep a busy life style, take care of my husband , my mom, and do little things for myself sometimes. My first big flare up happened just before my 50th b-day. Since then I have been on steroid 20 to 50 mg all the time and chemo twice (still continuing now). Would being on steroids sooner help, again I don't think so.

Listen to what your body tells you, you have a long life ahead. Enjoy your children. You will be able to cope just fine, its what we moms do. Take care of yourself and report any changes to your doc as you have done so up to now. It seems that he basically is of the mind to treat your symptoms and it works. The meds we take are so toxic that the longer your are without them the better. If you take them my experience is that I feel just a bit more tired, have less energy but with just a few days off here and there (only time off was when the pain litterally made me unable to move) I have worked both at home and work at all times. I even resumed my travels which I love so much, I just will not be able to take longs walks like before.

I hope this helps you to gain some prospective on this unusual disease of ours.
Keep smiling, happy attitude realy helps.