Hi! I am very new!!!

[Nrsepeters]

Hello,

My name is Cindy and I was diagnosed with Weg's on October 14, 11. Actually it was a partial diagnosis I guess? My P-ANCA and my C-ANCA were both positive. This week I had the CT's of my sinuses my lungs and my abdomen and pelvis.I have a follow up with my Rheumy on Nov 9th to get the results?

The symptoms that brought me to the Dr. in the first place was in my first two fingers on my right hand had numbness, pain, sores that wouldn't heal, turned deep purple when in shower/warm water and again PAIN! That was it? But now that I have been reading other symptoms and things that happen I think I may have had it brewing for 18-24 months,but...I am also a nurse so I tend to write off "odd" symptoms to other things?

Since diagnosis, the tiredness and soreness in muscles/legs is getting worse, my body feels so "HEAVY"
I am scared to death of what my future holds at this point, I hear about all the potential symptoms and medications and am not sure what to think?

Glad your all here, I will let you know what I find out? Is it possible with positive P & C-ANCA that it could be something else? Just curious???

Thanks Cindy :unsure:

[renidrag]

My first symptoms were joint pain, shortness of breath (SOB) on this site, and absolute fatigue. It took a bronchoscopy for my diagnosis. From what I have read here, Anca is not always a reliable marker. Others will be along with more answers and questions. The brewing of eighteen to twenty four months of symptoms is not abnormal as WG is very hard to diagnose. Good luck and one day at a time. I am one of the lucky folks that is in drug free remission presently.
Dale

[Shannon]

Hi Cindy,
Welcome! I'm sorry to hear about your diagnosis. It can be frustrating for doctors because they know based on what they are seeing and hearing that they are dealing with WG or GPA as they are now calling it, but they need those test results to confirm it all. I had granulomas in my lungs, a saddlenose, hole in my septum, joint pain and swelling in the knees, elbows and fingers, and they knew absolutely it was WG but my lung and sinus biopsies were non-conclusive and I tested positive for P-ANCA instead on C-ANCA. It was confusing, but the docs all agreed on WG and treated as such. I too was afraid for the future and to take the drugs, but they provided a lot of relief. You will be amazed at how much better you feel. Almost six years later I haven't had to go to the next level of treatment. I hope all goes well. Please ask questions as there are so many amazing people on this forum. I just joined myself this past month and can't believe I went five years in a vacumn just having the internet to rely on for information. This is a great site and should help you a lot as you navigate your way through this. Are they starting you on Methotrexate and Prednisone?

[Psyborg]

Welcome to the site, but sorry you had to find us. You'll see everyone has varying degrees of difficulty being diagnosed.

[NicShaf]

Welcome Cindy!
I'm kinda surprised to hear with all the pain you're in that they didn't at least start you on Prednisone or something. What results are you waiting for from the doctor? When I was hospitalized last December, they put me on Prednisone pending the results of my biopsy to help with the symptoms I was having at the time. Then after the biopsy came back, they gave me my treatment options.
Wegs is a scary diagnosis, but coming here and asking questions helps take a little of the fear away. Ask all the questions you want, there are many on here that have had Wegs for years, and have mountains of advice and experiences to share.
I asked the same question about ANCA levels when I was first diagnosed. I don't think there is anything else out there that would cause elevated ANCA's.
Best of luck to you, hope to hear from you again soon that you're feeling better and on your way to recovery!

[Dryhill]

Hi Cindy,

Welcome to the forum. It is quite common to be suffeering from WG for many months before it is diagnosed, in my case I had some symptoms of WG for at least eighteen months before I was sent to hospitl for tests. I agree with Nicole in that I thought they would have started you on Pred straight away.

Good luck for the 9th and do keep us updated on how you are feeling.

[Al]

Cindy--I'm not glad you had to find us, but I'm glad you did! This is a tough and scary business, but knowledge will, I think, put you in a better frame of mind. Elevated ANCA levels almost always imply an autoimmune disease, though any specific diagnosis must be confirmed with other evidence, Since you know that you have C-ANCA, presumably it has been studied by a pathologist, so this is more firm. But it is important to note that the severity of disease varies a lot. But even more important, in my opinion, is your response to it all. I call the proper response "rage therapy", and it really does help! But first you have to know that you are among people who are rooting for you!

Al

[Al]

Cindy--

PS I forgot to ask a couple of things. You didn't say what your other tests show, but it occurs to me that leg pain might possibly be associated with kidney distress, which is common with ANCA diseases. If so, methotrexate is usually taken off the list in favor of Imuran (azathioprine). The mixed ANCA types do not mean anything regarding a specific diagnosis (there are four main ANCA associated vasculitides), but they are somewhat unusual. Just a thought: do you have asthma as well?

Al

[maria garcia]

Welcome to the family <3

[Sangye]

Hi Cindy, welcome to the group. I'm wondering why they did a CT of the abdomen and pelvis.

It might have been justified in your case, but I'm just giving a general warning: It's easy for them to overdo CTs and x-rays early on. You have to be very cautious about it and remember that Wegs is a long haul disease. The rheumy I saw at Mayo Arizona WAY over-xrayed me. There was no way it was medically necessary. I've had far too much radiation from that and others who were too quick to use it.

[delorisdoe]

Hi Cindy, welcome to the group. I'm wondering why they did a CT of the abdomen and pelvis.

It might have been justified in your case, but I'm just giving a general warning: It's easy for them to overdo CTs and x-rays early on. You have to be very cautious about it and remember that Wegs is a long haul disease. The rheumy I saw at Mayo Arizona WAY over-xrayed me. There was no way it was medically necessary. I've had far too much radiation from that and others who were too quick to use it.

I too have diverticulitis and they mentioned doing a ct of the abdomen and pelvis BUT the surgeon-who was awesome-decided against it. He knew of my wegeners history and asked me if Id had a lot of ct's and when I replied yes he determined that it at this point was not necessary. Funny thing is my wegs doctor seemed anoyed that they had not done a ct for confirmation. I dont get that really. If I have another attack then that should be proof enough and if i never have another attack than what would have been the point.

[elephant]

Did you ever have a colonoscopy? Sometimes they can see if your intestines are inflammed.

[delorisdoe]

I was told that I would and I signed the consent form and then never heard from them again. The surgen was called away I only saw his resident so I am not sure if he disagreed, changed his mind or what.

[Nrsepeters]

No asthma? My Dr asked the same question, just SOB with minimal effort?

[Nrsepeters]

Hi Cindy, welcome to the group. I'm wondering why they did a CT of the abdomen and pelvis.

It might have been justified in your case, but I'm just giving a general warning: It's easy for them to overdo CTs and x-rays early on. You have to be very cautious about it and remember that Wegs is a long haul disease. The rheumy I saw at Mayo Arizona WAY over-xrayed me. There was no way it was medically necessary. I've had far too much radiation from that and others who were too quick to use it.I assumed they CT'd my abd and pelvis to check my kidney's? I will start asking more questions from now on! It was just so overwhelming at first-I am an RN and I had never even heard of WG so when he said "It's compatible with life" I thought he was kidding!!! I keep reading everyone say that I need to start on something ASAP and I can't get my Dr's nurse to return my calls! I am trying to "play by the rules" but it is becoming more difficult!!!I am getting ready to try again???

[Al]

I assumed they CT'd my abd and pelvis to check my kidney's? I will start asking more questions from now on! It was just so overwhelming at first-I am an RN and I had never even heard of WG so when he said "It's compatible with life" I thought he was kidding!!! I keep reading everyone say that I need to start on something ASAP and I can't get my Dr's nurse to return my calls! I am trying to "play by the rules" but it is becoming more difficult!!!I am getting ready to try again???

I met some terrific RNs in the hospital, but I found that most had been too properly trained to play by the rules. Once we came to an agreement that they were guidelines rather than rules, and even they were to be re-invented as necessary, we got along fine. My point is, the "rules" are there for someone's convenience, just not yours. Best to make the system work for you.

Al

[Stephanie78]

Hi, Sorry to hear about your new dx. My most important advice was advice that Sangye gave me my first post on here. FIND A WG SPECIALIST AND SEE THEM ASAP! I have developed a great respect for Sangye during this entire process (as well as for others on here) however in the beginning I thought "I think his dr knows what he is doing" truth is... Just because they are a Rheumy it DOES NOT mean they know what is best when it comes to this disease. My husband went from running/biking at age 36 to Not being able to walk due to pain in a matter of 2-3 days! Between May and August he spent more time in the hospital then at home. We almost lost him in July/August. Due to an AWESOME God and Unbelievable Doctors my husband is now home and tested ANCA negative at his last appt in September! Yes you need Prednisone (as one poster said) But Prednisone alone will NOT make you better.
I wish you the best in your journey! Keep us updated. We may be strangers but thru this process we all become friends. TRUST ME!

[Al]

[QUOTE=Stephanie78;48946in the beginning I thought "I think his dr knows what he is doing" truth is... Just because they are a Rheumy it DOES NOT mean they know what is best when it comes to this disease.[/QUOTE]

You said a mouthful, Stephanie. The doctor can (usually) read the literature better than the patient (if he or she does!), so, by definition they know more that you, but that doesn't mean they know a whole lot about this complex disease. Besides, it's your body under fire, not his. Its responses are more important (and probably more to be trusted) than the doctor's feelings!

Al

[Chadwyck]

Hi Cindy, welcome to the forum. I'm new here as well as of yesterday. It took me a year and a half to find this place after diagnosis. I'm slow! Sorry to hear about the pain you're experiencing. I'm sure every Wegener's patient can agree with me on that one. Hopefully all your tests are good results. Either way, at least you now know what you have. The worst feeling is when they tell you everything you don't have which is nice to hear. But, knowing what you have also puts the period at the end of the sentence better. All the best to you. The people you meet in this forum are amazing! They're very informative and it's like a Home For Weggies, is what I call it.

Chadwyck

[Dirty Don]

Hi Cindy, welcome to the best forum for us Weggies...quite a bit of caring and info that we need and/or can use here! I, too, started with pain in joints, sores on hands and jawline (go figure on that one!), heavy fatigued body, low appetite, bloody nose and sinuses, and, just for kicks, contracted pneumonia at same time...a perfect storm for the WG/GPA! But, with astute docs who knew they didn't recognize what was going on inside me, they sent my lung samples (the surgery damn near killed me as it was...was even put into a coma to survive...sheesh!) to Mayo, and now I am on aggressive treatment with Mayo. While it's not the relief I wanted, it's very good and reassuring being with someone who knows what WG is and can use resources to treat it properly. As someone pointed out earlier, and is frequently pointed out, you need a doc who is experienced in WG and has good resources. It's all about you now...react, be persistent, be patient...take care!

[Nrsepeters]

Thank you all for the support! Now here is somethng I think very important, when I go see the Rheumy on the 9th for all my results and treatment options, what do I need to make sure I come away from there knowing and what are the important things I need to ask? Either about results or treatment or maybe options? What would you all like to have known or wish you had asked?

[Dirty Don]

Hi Nrsepeters, well, seems you know what to do...gather a network of WG knowledgeable docs about you, including docs for all organs...right now I have an ENT, pulmonologist, and Rheumy who specializes in WG (actually am down from 7 docs from initial surgery & care at hospital!!). Along with them, their Rheumy dept. has 2 other docs who have an interest and knowledge of WG, so there's lots of sharing going on. Also, ask about side effects as drugs affect us all diffferently...I am currently on mtx and pred...the mtx is ingested in one dose each week, and I have 2-3 days of extreme lethargy, then snap out of it till next dosage. So doc has put me on a different dosaging schedule...hope it helps. Other than that, stay educated on the disease, read this forum a lot, find other sources for referencing, and, as some others have said already...get the best you can get in terms of treatment...don't know where you live, but Mayo, Cleveland Clinic, Johns Hopkins...all specialize, as much as is possible, in WG/GPA. Best of luck to you...be persistent...WG is, so we need to be also!

[Al]

Thank you all for the support! Now here is somethng I think very important, when I go see the Rheumy on the 9th for all my results and treatment options, what do I need to make sure I come away from there knowing and what are the important things I need to ask? Either about results or treatment or maybe options? What would you all like to have known or wish you had asked?

Cindy, it is useful to have a DX, though treatment is about the same for all forms of ANCA vasculitis: Prednisone and some other form of immunosuppression (CTX, RTX, MTX, Imuran, CellCept are the most common; some are contraindicated in certain cases). You are somewhat unusual in have both P-ANCA and C-ANCA, which is where the question of Asthma comes in (for diagnosis, it might indicate Churg-Strauss Syndrome, as opposed to GPA (Wegener's) or MPA (Microscopic Polyangiitits). Split ANCA types is a tad more common with Churg-Strauss than with the other vasculidities. I'm still curious about the CT scan, unless they were specifically looking for something, like a kidney stone. For kidneys, an ultrasound is the usual first-line exam, followed by a biopsy. I would ask that question. Also, I would ask questions about their DX philosophy. At least, this might get them to open up some. You are a medical professional ourself, after all!

I respect the Mayo Clinic, but it is worth noting that it is a rather unusual institution: Its doctors are salaried, so the team approach actually works. This is not the case with most clinics. Yes, you can have 5-10 specialists working for you, but they rarely talk (except, perhaps, on the tennis court), because their is no financial incentive to do so. In this case, you end up being yur own moderator....

Al

[Dirty Don]

Cindy & Al, I am currently using or being used at Mayo Clinic in Phx. They are the best so far. Knowledgeable, proactive, aggressive, team oriented...maybe it is because they are salaried...after all, doesn't money make the world go round?!?! I say 'being used' at Mayo as they took me in no questions or delays...I think they wanted my 'example' to work on. LOL! I went thru a pretty rough time, who hasn't, initially, so they are very interested in dealing with me and my condition. Also, they (the ENT) is considering a relatively new procedure for my sinus/Eustachian tube affectation...wouldn't get that at an ordinary hospital. Anyway, just sayin...if you can get one of the major clinics to at least do a dx, then you have a pretty good start...my original hospital actually ended up sending my lung biopsy to Mayo for further definition as they only suspected WG...Mayo confirmed it, so I ended up, fortunately, going there for treatment. As Al said, you ARE your own moderator in all this no matter how much help you get...keep on whoever is helping...ask questions, be persistent...and, unlike me, be patient!! LOL...take care the both of you.

Don

[pberggren1]

My doc said that most cases of split ANCAs like that mean that the person has WG and CSS.

[Nrsepeters]

My doc said that most cases of split ANCAs like that mean that the person has WG and CSS.
Has anyone else heard this also? That is a bit mor worrisome???

[pberggren1]

I would not worry about something that could or might happen.

[Al]

Has anyone else heard this also? That is a bit mor worrisome???

Don't think it is worth any additional worry. Even though we like to name our ailments, the fact is that the are all different. (Of course, if you had several unrelated problems, like a broken tibia and reflux, then you could, perhaps, be allowed to worry about them as well.) The more important distinction is in how it affects the individual sufferer. What we are trying to do here is make that not such a lonely road.

Al

[Nrsepeters]

Ok, Thank you! I will just wait and see what Wednesday holds? I think just having some answers-no matter what they are will help! Thanks every one!

[Al]

Ok, Thank you! I will just wait and see what Wednesday holds? I think just having some answers-no matter what they are will help! Thanks every one!

Give us a report when you can!

Al

[Trudy]

My doc said that most cases of split ANCAs like that mean that the person has WG and CSS.

Phil, I googled CSS without much success..what does it stand for? I have been both MPO and PR3 positive also.

You have been on alot more, does this mean you are doing better? Hope so!
Trudy

[delorisdoe]

churg straus syndrome would be my best guess

[Al]

churg straus syndrome would be my best guess

That would be correct. CSS is the often forgotten runt of the evil litter of ANCA diseases. I take that back--it is slightly more discussed than renal-limited AAV, but not by much. It is usually distinguished from MPA because of the asthma that its sufferers incur and from GPA due to the dearth of granulomas.

Al

[maria garcia]

At first I thought CSS because of my daughters rhinitis and allergies that also goes with CSS. But no Asthma so I ruled it out. My daughters doctor, I don't think even knows exactly. There all treated the same depending on the severity of the damage. So the Dr. doesn't seem to be to concerned about the name. I call it AI vasculities.

[Al]

At first I thought CSS because of my daughters rhinitis and allergies that also goes with CSS. But no Asthma so I ruled it out. My daughters doctor, I don't think even knows exactly. There all treated the same depending on the severity of the damage. So the Dr. doesn't seem to be to concerned about the name. I call it AI vasculities.

Good for you, Maria. The name doesn't mean so much. What is important now is that your daughter gets good treatment and lives a long and productive life. Now, take your your family out to dinner (at a healthy restaurant), and tell them I told you to!

AL

[ShaniBooT]

Hi Cindy,
Welcome, I'm leaning a lot here. Dean and I just joined last month. Dean was Diagnosed last December when he finely ended up in the hospital. We believe he had WG for at least two years before he finely got really sick. He was having so much problems with his ears and joints. He finely lost his hearing in one ear and 50 percent in the other. We have all kinds of hearing devises laying around our home. We keep trying different things so he can hear. He now has it in his sinuses and his doctor told him last week that he has a tumor there, because his nose bleeds a lot now. His eyes and head hurt him a lot. We are going to be going to a ENT doctor on Monday. He had nogales on his lungs and he was spitting up blood. They put him on Prednisone and Methotrexate right away. We would like to know about you and what the diagnose is so let us know.
Barbara & Dean

[kelly]

hi Cindy i also had those purple sores on my hands and one under my right index finger and lost the tip of it how about you are your fingers ok also i have noticed that when a flare comes on i get those spots on my foingers and increse the pred and they go away as does the flare.