Newbie introduction

[jonoct2010]

Hi everyone,

My name is Jon & I live in North Nottinghamshire in the UK.

I will be celebrating my 41st birthday in 2 weeks and up until my diagnosis of WG in June, I have never been seriously ill (aswell as never having heard of Wegener's Granulomatosis)

I guess certain alarm bells started ringing for me when I started with the runny nose & what I thought (and my GP thought) was an ear infection. I was prescribed a 7 day course of anti-biotics (Amoxycillin) but after a few days I noticed that there wasn't any improvement with my right ear (and I hadn't suffered from ear-ache since probably childhood, if ever!). I returned to my GP who prescribed me stronger anti-biotics (Co-amoxiclav) & referred me for a chest x-ray as my breathing was a bit raspy.

Can I just add that also at this stage, I had been experiencing disturbed sleep every night by a pain in the middle of my back. It wouldn't hurt throughout the day & would only "flare" up after being in bed a few hours, effectively waking me up in pain. After a good half hour out of bed, the pain would subside, so initially I thought it was either a mattress problem or the way I had been lay down in bed.

I was prescribed Omeprazole for this as my GP thought it may have been a reflux problem.

The results of my x-ray came back showing a shadow on my right lung & lumps on both sides indicating the possibility of cancer but then the name Wegener's Granulomatosis was mentioned as apparently I was a "classic" case especially with having sinusitis too. I also had CT scans which highlighted more lumps & nodules in my lungs.
All my blood tests came back fine so it was decided that I would have a biopsy taken from my nose as by this stage I was experiencing the crustiness that WG brings. This confirmed that I did indeed have WG - Needless to say, family & friends were staight onto the internet to find out more information (with various results from proper horror stories to proper medical diagnosis).

The next two weeks were probably what I can only describe as horrendous.

I was prescribed Preds 60mg, Omeprazole, Adcal D3 & Risedronate before I was to begin my course of treatment. I was in daily pain with aches & pains all over my back so was also taking Tramadol & Paracetamol. This lasted a couple of weeks in which I also suffered Faecial compaction fo a whole weekend, being prescribed Movicol that took it's time to work through my sytem (I call this time my "weekend from hell")

After this time I noticed that my left leg was starting to feel strain in the calf area, feeling like a pulled muscle or sprain etc. It then got worse, swelling up like over double it's size, making it impossible for me to walk on.

After seeing my Rheumatology consultant he referred me to hospital & on the same day I was admitted. After a doppler scan, it showed up that I had a blood clot about 4 - 5 inch from my groin. I was put on Heparin to start thinning the blood. My water sample was showing bloods +3 so they wanted me to have a kidney biopsy, which came back as showing mild vasculitis.

It was decided that I would have 6 fortnightly treatments of cyclophosphamide (the last one was on September 27th) & although everything has responded well, my bloods still are +3 but apparently that's something that happens with vasculitis or it may have something to do with the Warfarin I have to take for 6 months'

Anyways i have now been started on my 5 year "maintenance" course of daily Azathioprine, starting on 50mg a day and I begin my journey of learning what my body can and cannot do.
My preds have been reduced to 20mg from initially 60mg, then 30 then 25. My weight has also significantly increased from 64.8kg (hospital admittance weight) to currently 79.4kg

I am happy to answer any further questions & would like to get to know how this condition affects YOUR everyday life.

I am hoping to start back to work at the beginning of November after being on sick leave since the 10th June. How have you guys coped with any returns to work etc.

I look forward to hearing from you

Jon

[Sangye]

Hi Jon, it's nice to meet you. Your story is all-too-familiar to most of us, but thankfully you were diagnosed fairly quickly.

I would question that 5 year maintenance course of aza. Wegs specialists are increasingly concerned about keeping us on immune-suppressants for longer than is absolutely necessary. Regular rheumys generally do long courses of maintenance drugs, since they don't see many people with Wegs.

[vdub]

Your story does indeed sound like "classic" wegs. Sadly, welcome to our little group.

The weight gain sounds pretty typical. I wouldn't try to fight it. You can lose the weight, but it's darned hard. 14kg is about a typical gain.

As for returning to work, it kind of depends on how you feel and how physically intensive the work is. Send a PM to psyborg (bob). I believe Bob is still working....

[Hammy8241]

I had a meeting with my bosses and explained what I felt I could and could not do and came to an agreement with them for a trial period. I was lucky and I slipped back into work quite easily with just a few adjustments. Try part time to start with as you are not the same person as you once were nomatter what your brain/heart tells you. If you work too hard then your body has some wonderful ways of telling you the next day. Pace yourself and listen to your body - don't got that extra mile as the next day you may not be able to get out of bed. I know you will push it as we all try it but ........!!!

Don't know if you have read this but IMO it helps you and others to understand.

Good luck

[Dryhill]

I was diagnosed with WG just before Christmas 2010 and did not return to work until mid July this year. Being a self-employed taxi driver it was easy for me to start doing only three or four hours a day, now I am up to doing a nine hour shift. But have learnt the hard way not to over to do it if I am feeling tired - oh yes WG soon lets you know if you have pushed yourself too hard.

[norcalian]

When I was released from the hospital last May, I was suppose to stay on disability until November. However, I went back to work at the beginning of August. I worked for the week and then got sick with pneumonia (PCP actually). I don't know if working got me sick...but I don't think it helped. This disease is pretty hard core...take as much time as you can to heal before jumping back into work with both feet (as I did).

[Susan55]

Hello Everyone

I am new to this site. I am 61 yrs young, and have just been told by family doctor that I have GPA. I am waiting to see another doctor (which is Oct 30/2017) . My family doctor said well we finally figured out what is wrong with you after 2 yrs of you coming in to see me not feeling well. He said you need to see a rheumatologist immediately to start treatment. Well 2 months away not immediately I don't think. All blood work came back "positive for GPA" . So, I guess the next step with this is to see a rheumatologist and go from there. I am so stressed having to wait so long to see this doctor. I just need to know treatment and more. I have so many questions that I need answers too.
Wish I had more to share at this time, but I don't. Just don't feel well.

In June of 2016 I was diagnosed with Guillain-Barré syndrome (GBS) (immune disorder) and was in the hospital for 7 days having IVIG blood transfusions. I got much better and was doing great and then all of a sudden, I just didn't feel well, fatigue, feet swelling, sick to my stomach, vision just goes and can't see and then it comes back, head feels funny, pins and needles in arms and legs and the list goes on. My family doctor kept saying oh lots of people have what you are having, go home and come back in two weeks. I heard this for many months. Came home crying as I don't feel well. 8 weeks ago, I went back to his office and a women dr was taking over for him, as he was on holdiays. She is the one who ordered the C-ANCA testing and it came back positive. I then went back to see my regular family dr and he just starred at the print out of my blood results and said you need treatment NOW! So Here I sit waiting to see a rheumatologist to get more information and many questions answered.
I am trying to stay calm, but hard when all the symptoms don't go away.

Thank you for listening and hope to give you an update soon as to what the treatment will be


I

[vdub]

Your's is not all that unusual a story. I once read that the average dx time for gpa was 24 months and that seems about right. I'm glad they finally nailed it and hope you can start treatment soon. Good luck!

[Pete]

Susan, if you can't get into a rheumatologist, perhaps your family doctor can consult with a Vasculitis specialist. Here's link http://www.vasculitisfoundation.org/map-2/

Hope you can get started with treatment soon!!

[Susan55]

Pete, yes I will ask my family doctor to consult a Vasculitis specialist. Thank you so much! I live in Vancouver Canada so i will check the link above and hoping it's for my area. And yes, live life fully :)
I called the specialist office today and I now have an appointment for Sept 25th instead of Oct 30th....a bit better..thanks again Pete

[Susan55]

Thank you :) I am also looking forward to asking many questions about the disease, as my family doctor won't really talk about it. He just says wait to see the specialist. One day at a time and just keep going and smiling each day.

[Alysia]

Welcome to the forum, Susan. The key for a good wg treatment is to find the right expert. There should be some good wg docs in Canada.

I saw on other threads that you are looking for friends in BC area. Some friends are not active here now as before so I suggest you to send them emails through their profile here. Send it not as a pm but as an email. Write them your email address so that they can write back to you not only through this site.

I suggest you to email @LisaT (http://www.wegeners-granulomatosis.com/forum/member.php?u=8274) and jola57 and @marta (http://www.wegeners-granulomatosis.com/forum/member.php?u=937).

some friends told me that they forgot their usernames and/ or passwords and cant log in to the forum. Any idea what they can do, @andrew (http://www.wegeners-granulomatosis.com/forum/member.php?u=1) ?

Meantime, Susan, you can ask us whatever you want.

[andrew]

some friends told me that they forgot their usernames and/ or passwords and cant log in to the forum. Any idea what they can do, @andrew (http://www.wegeners-granulomatosis.com/forum/member.php?u=1) ?



Easy! They can email me and I'll sort them out :)

[Susan55]

Hi Alysia

Thank you so much for your reply and yes I will email them. Just being on this site I am taking the news of wigeners much better, don't feel alone. Thank you to everyone on this site..hugs

[marta]

Hi Susan,

Marta here. I live in Jasper, so only a ten hour drive away from you. Ha ha.

First of all I have to say how bummed I am that we are meeting this way but if you're an optimist like me, you'll know that this is happening for a reason, and joining this site is the first of a series of healing, positive steps leading into a brighter future. That's how it was for me anyways. I read your post yesterday and started to respond then life once again got in the way, so here I am trying again.

Yesterday I started writing about making sure that you have a rheumatologists with either some solid experience in Vasculitis, or no prideful ego that would keep them from conferencing with Vasculitis specialists if something in your case is over their head. Having been part of the medical system since 2010 with Wegener's, I've seen both sides of the spectrum, and it's hard when you run into a doctor of the latter variety that you have to stand up to, and call on their decisions. It's hard to be at your worst physically, emotionally and spiritually and have to stand up to a doctor to boot. I think this ego is part of the reason we have so many people on here having to wait so long to finally find a diagnosis. If the egocentric doctors can't figure out what is causing the problems you're reporting, then it must all be in your head. Arrrghh. Use all of your energy to find the right doctor. It's an activity that can save your life.

My doctor here in Alberta is one of the heads of CanVasc, a small country wide organization of doctors specializing in Vasculitis. If your rheumatologist isn't one of them, they can certainly bounce questions, ideas, treatment protocols, etc., off of this group of docs. The best case scenario would be to get one of them as your main rheumatologist though. http://www.canvasc.ca/InformationCanVasc.htm
What I wrote yesterday (but didn't post) was that you should get your doc to refer you to one of them, and then once the referral is through, you call the office, and tell them you've just been diagnosed with Wegener's and it's a disease that can turn on a dime, and you've been dealing with it for a long time and it's getting worse. Doctors always have holes in their schedules for things like this, and once I got a referral to my current doctor, early December 2010, I called them and told them my situation, and I ended up seeing the doctor January 3, 2011. If Christmas wasn't part of the equation, I would have seen her earlier. Actual specialists in Wegener's and/or Vasculitis KNOW that this is an unpredictable disease that is harder to treat once it's more established in the body, so they'll take you ASAP. I see that you moved your appointment up to end of September, so that's a good step in the right direction. I would push for even closer. Maybe give them a call and say that you're available to see the doc if anyone cancels. Let them know that you need to be under the right treatment ASAP, and who knows. Maybe you can get in tomorrow. ;)

Another point worth noting is that once you have an autoimmune disease or disorder, you're susceptible to more. Once your immune system is confused (our issue) it can turn on various organs or systems. The GBS might have been the first and now WG has snuck into the picture. There is an interesting coincidence with H1N1 vaccine, GBS, and WG (GPA) but that's a different topic altogether.

When you go in to see them, go in with a friend (advocate), with a list of questions, and if no friend is available, ask if you can record the appointment because you're not feeling sharp, and might forget important information. Another thing that worked for me is asking your doctor for permission to have access to your lab work. It's really good to be able to go in and get it (you learn what it means pretty quickly) and then you aren't sitting around waiting for a call from your doc. You can also see if there are correlations between how you feel and what your lab work is showing. Sometimes you can even thwart a flare by looking at your lab results. It's so much more powerful of an experience when you feel like you're driving the car(e) instead of being a passenger on the bus.

Staying calm is a good instinct. I believe that the stress also fuels the WG fire. You'll get a lot of unsolicited advice from people who have never heard the term Wegener's Granulomatosis or GPA (aside from Grade Point Average) and will tell you to not take the meds, to try an immune booster, or this or that. Remember that our particular flavour of autoimmune disease is a nasty one and if treated wrong can kill, and also that an overactive immune system is the problem (so all those well intentioned do gooders could do much more harm than good with their advice.) Just a couple of thoughts to keep in your back pocket.

If you want to chat, please feel free to call me. Send me a PM and I'll give you my phone number or you can give me yours (I don't want to put it out here on the open web) and we can chat.

I wish you nothing but success, healing, peace and a moment when you look back at this time in your life and say, "whoa, wasn't that crazy? glad it's all over and done with."

Alisa, yes I still remember my password but I've been spending all of my free time this summer riding my new electric assist bike that I got for Christmas. As of a couple of days ago, I've accumulated 2,500km on my bike. It has literally brought my life back to me. I don't have enough words in my vocabulary to express how much joy, healing, and hope this one bike has brought into my WG life. But that's a whole different story.

Lots of love to you all.

Marta

[marta]

By the way. I am incapable of being economical with words. Sorry. :blushing:

[Jaha]

Welcome Susan to the best group of caring and truly wonderful people. I am wishing you all the best with getting started on your treatments. Please keep us updated on your health. Please take care of yourself.

[Susan55]

Thank you Jaha for the warm welcome. For me Sept 25th can't come quick enough. I know my blood work showed positive for this disease, but I need to hear it be confirmed 100% for sure I have it from the Rheumatologist and then it will feel real. I just don't understand why they make us wait so long to get the disease confirmed :(
My brother told me NOT to tell people until I know 100% for sure that I have it.
I feel like my head is spinning with hundreds of questions, like what is the next step to diagnose the disease? Was anyone told they have GPA just from a blood test?

I feel like a cold coming on now, sneezing lots and lots of mucus in my chest. Not sure if this is part of the symptoms or not.

I keep calling the Rheumatologist office for any cancellations but not luck yet. I just want to get in there.

Thank you Jana and everyone on this wonderful site for listening to me. Once I see the Rheumatologist I won't be asking silly questions over and over.

Hope everyone is having a good day and keep smiling :)

Sue

[Susan55]

Hi Marta

Trying to stay calm but finding it so hard. I am making my self numb all over until sept 25th when I actually hear the Rheumatologist say YES you have WG. I am not sure if blood test alone can say you have it. Not sure the next step they take to confirm the ugly disease. I sent you a private msg Marta to you.

I hope and pray this Rheumatologist I am going to see knows lots about WG. I will ask to see one of the doctor's on the list of doctors (above) but I have a feeling my family doctor will say this Rheumatologist will be just fine. My family doctor doesn't listen to me at all. I've been trying to find a new family doctor but hard to find one in my area that are taking new patients.

I've been going to my family doctor for over 2 yrs about my symptoms and all he keeps saying is come back in two weeks if your not feeling better. I keep going back and he keeps saying the same thing OR there is nothing wrong with you as all blood word is fine. Then I went back again and he was on holidays and a women doctor was taking his place and she said I see you have had lots of blood work done but is it ok with you if I get you to do just one more test and I did. This is when the blood test came back saying Positive for WG. Now my family doctor is back from holiday and calls me here. He said after all these yrs we finally know what's wrong with you!!!!! Please come back with a family member so we can talk. So I did just that, took my brother with me to see him. He comes in the room and looks at my brother and speaking to him as if I wasn't in the room. He never looked at me once and he never spoke about WG!!!!!!!!!!!! he was asking questions to my brother "is your sister stable" OMG, I almost fell off my chair and I don't know what happen to me, but I became hurt, angry and went numb thinking "am I crazy" are these symptoms NOT real??
My brother was firm with him and said you are NOT listening to my sister when she comes in here not feeling well, you keep telling her to go home and come back in two weeks. The doctor didn't say a word. Then my brother asked questions about WG and he said you have to wait to see the Rheumatologist if she has it or not, because one day a blood test can show you have it and then the next day it can show you don't...so this is why I feel like I am going crazy and it doesn't feel real.

Oh well 3 plus weeks to wait to get an answer so I can start dealing with it in a positive way and not be mentally messed up. I can't sleep anymore, want to throw up all the time and so so tired.

Thank you Marta and everyone else on this site for putting up with me going through this right now. I appreciate all your support

HUGS..xoxoxoxxo
Sue

[Pete]

Hi Sue,

As you get ready to see the rheumatologist, write down your questions and take the list to your appointment. There are no stupid questions (and I hope you don't get stupid answers). If you can. Take your significant other, Mom or Dad, or a trusted friend with you to take notes. I hope your doc will also give you a document called an after visit summary. This will give you treatment instructions, the correct names and dosages of prescribed drugs, any recommended OTC meds/supplements, and recommendations for diet, exercise, etc.

Be very wary of cold symptoms. They could be just a cold. They could also be symptomatic of disease activity. If you cough up phlegm and there's blood in it, call your doc right away.

Hope you can see the rheumy sooner. Be persistent. If you feel much worse, call and tell them you're feeling worse. They may be more amenable to squeezing you into their schedule.

Good luck!!

[Susan55]

Hi Pete

I've started my list of questions for the doctor's appointment as soon as my family doctor said I needed to start treatment ASAP. I only have my daughter and brother left, but my brother said he would go with me. The after visit summary, would I get that later or at the end of the visit? Never heard of it. This would be very helpful having this and I will be asking for one.

I only have the sneezing and can feel mucus in my chest. No blood that I can see (that's good) :biggrin1: . I will be calling the rheumy again today just to make sure no one has cancelled.

Well, the sun is out and I have the music on and going to enjoy my day today. Hope all of you have a wonderful day :)

From what I have read they have to do a biopsy to make the final diagnose, is that correct? A blood test alone can't tell them? :confused1:

Thank you again Pete for all your helpful advise!!

Sue

[Alysia]

Hi marta, I missed you around and I allways love to read your writing, as long as it might be.. :) I was asking about someone else who forgot her username. I am glad you have a good summer.

Susan, in most cases WG diagnosis is made by taking a biopsy from the lungs or the kidneys.
Did they check your creatinine (in your blood tests) - To know if WG is affecting your kidneys ? Did you see a pulmonary dr. to check your airways ?

In my case they didnt do biopsy in my lungs out of ignorance at that time (wg is rare in Israel much more then it is in Canada). Later they did biopsy only twice in my nose. But nose biopsies are not reliable so mine turned out negative although I do have WG. My diagnosis came after a case conference that they did, discussing all my symptoms.

I think we had here a thread about what to ask the dr. In the first meeting. I will see if I can find it....

[Alysia]

Check this thread for some good advices:

http://www.wegeners-granulomatosis.com/forum/threads/151-Tips-for-Dealing-with-Doctors

[Susan55]

I would love to read the thread to see what questions to ask.

The blood test that were done were for me were:

C Reactive Protein - came back levels were 1.6 (intermediate)
Nuclear Ab - Neg
Neutrophil cytoplasmic Ab pattern - came back "Positive PR3-ANCA and neg MPO-ANCA
Rheumatoid factor came back high - 406 (not sure what this means)
Proteinase 3 AB came back high 1.9 (not sure what this means)

I have had blood in my urine for almost 3 yrs now. Saw a Urologists a yr ago and it showed large blood vesels in my bladder, he said some women have it and not to worry about it. (but maybe it all makes sense now with WG) ??
,
I see a pulmonologist for my COPD and I am wondering if I should call her office and let her know about the findings "positive C-ANCA ????????????????????

If you find the thread please do let me know.
..
I am just learning how to use this site, lol..OK no laughing:laugh:

I love all the help I am getting on here today, I am calming down lots and getting some answers. What would I do without all of you!!

:hug2::hug2::hug2::hug2:

[Susan55]

I would love to read the thread to see what questions to ask.

The blood test that were done were for me were:

C Reactive Protein - came back levels were 1.6 (intermediate)
Nuclear Ab - Neg
Neutrophil cytoplasmic Ab pattern - came back "Positive PR3-ANCA and neg MPO-ANCA
Rheumatoid factor came back high - 406 (not sure what this means)
Proteinase 3 AB came back high 1.9 (not sure what this means)

I have had blood in my urine for almost 3 yrs now. Saw a Urologists a yr ago and it showed large blood vesels in my bladder, he said some women have it and not to worry about it. (but maybe it all makes sense now with WG) ??
,
I see a pulmonologist for my COPD and I am wondering if I should call her office and let her know about the findings "positive C-ANCA ????????????????????

If you find the thread please do let me know.
..
I am just learning how to use this site, lol..OK no laughing:laugh:

I love all the help I am getting on here today, I am calming down lots and getting some answers. What would I do without all of you!!

:hug2::hug2::hug2::hug2:

[Pete]

Hi Pete

I've started my list of questions for the doctor's appointment as soon as my family doctor said I needed to start treatment ASAP. I only have my daughter and brother left, but my brother said he would go with me. The after visit summary, would I get that later or at the end of the visit? Never heard of it. This would be very helpful having this and I will be asking for one.

My rheumy is at Cleveland Clinic and my internist is at Ohio State, both large teaching hospitals. My doctors usually have a computer on one side and me on the other. While I'm talking, they're typing. At the end of the appointment, they print an AVS and send me on my way. The AVS is also available for download from my electronic medical record. Both CC and OSU use a product called MyChart as the patient's on-line gateway to their medical records. Doctors can also see my records at both hospitals (once the releases are signed). My test results are there. I can request appointments. I can also message non-urgent medical questions and request prescription renewals. It's pretty awesome.

Before I got sick, I was a patient at a smaller family practice. I didn't get an AVS from them because that pre-dated the federal requirements for electronic record keeping.

[Alysia]

Yes, Sue, I think you should call your pulmy and update her.
Ask also to check your creatinine in your blood tests. It will indicate how are your kidneys.

[LisaT]

Hi Sue, do you know exactly which blood test indicated wegeners? Are your kidneys showing damage or was it the ANCA antibodies? Either way, it seems clear that: 1. Your doctor is pretty useless and you need a new one asap; and 2) waiting almost a month for a specialist and treatment could be too long and cause you more symptoms in the interim. I'd be breaking the rules and double doctoring. Is there a good clinic you can go to and explain that you have this disease that could be doing you damage and you need an immediate referral? Can you call the Mary Pack Arthritis Centre and ask how you get in to see Dr. Dehghan if your own doc doesn't understand the urgency and isn't willing to make an urgent referral? VGH has a rapid access clinic through which I was diagnosed and treated for RA (pre-GPA diagnosis). Perhaps there is something similar for Vasculitis. Failing all of that, you can get yourself to the VGH ER, (prepare to be there for hours), explain your symptoms and tentative diagnosis and that you need to see the rheumatologist on call because you're feeling too crummy to wait for treatment while the disease has its way with you. Any VGH rheumatologist will know this is too urgent to wait a month. If your doc told you you have GPA and did not do whatever he could to get you in to a specialist urgently, and didn't at least put you on prednisone to control the inflammation in the interim, he's not doing his job. If you're too unwell to process all of this and take quick action, please have your brother or someone else get on the phone and try on your behalf. I'm traveling today, but if you need me to I can make some calls for you tomorrow. I don't think I'll be home early enough today.

Sorry that I haven't really introduced myself or addressed the personal and human side of all of this yet. I'm concerned about you getting decent care more quickly. I'm sorry you're looking at a diagnosis of GPA and will connect with you more... you've come to the right place! I've been AWOL from the forum for a long while, but keeping in touch with members through Facebook groups. Believe it or not, I've met one other mom with wegeners in Ladner. She was in VGH a few years back and the team there basically saved her life. She's doing relatively well. I was diagnosed in 2013 (ish). It started as a theory because I'm ANCA negative and have no kidney involvement. At first my nose and throat symptoms were thought to be possibly related to my RA. When I got bad subglottic stenosis and started choking on my own phlegm--I know, gross, right?--my rheumatologist and ENT together with Dr. Dehghan who was doing a fellowship in Vasculitis at the time, put me on imuran and prednisone and it controlled the problem. So they decided it is 'limited' GPA, which means it's respiratory and not in the kidneys. I understand that can change at any time. I've been flaring for months with prednisone the only thing that controls my symptoms, so I'm finally about to start Rituximab. In BC you have to 'fail' two drug combinations before rituxan will be covered. I tried methotrexate many years ago for RA and couldn't be tolerate it due to nausea; so flaring with my current meds is the second time the meds have failed me. Depending on the severity of your symptoms, you may want to ask if there's any way to go straight to rituximab. If not, don't waste any time telling the doctors if the meds they prescribe don't agree with you or cause too many side effects or don't control your symptoms. From what I've read and learned, rituximab is our best bet for remission with lowest toxicity and fewest or least severe side effects. It has its risks, and some people react or can't tolerate it. But it has brought many people remission...

Sorry this is so long. I hope you dont feel pushed, pressured or panicked by all I've said. No need to panic, but it is clear from others' experiences that the sooner you get a specialist and the right treatment, the better! I'll be in touch again when I'm home and settled in. Take a deep breath, and do whatever helps you relax and rest too. You will get through.

[LisaT]

Sue, I just read this after I posted a long winded reply to a different post of yours. Yes definitely call your pulmonologist. Ask her to prescribe you a prednisone dose to get you through until you see a specialist. Also ask her to refer you immediately to a Vasculitis specialist or team. There are some in Vancouver and New West (see my other reply) or she can choose from the CanVasc list you were referred to by other members. Good luck and please let us know how it goes!

[marta]

Susan, OMG, I just read your post to me. It's so much like my early days, and I'm pretty sure your experience rings true for others on here. Your family doc needs a slap upside the head, but that's for later. Ha ha.

I also had a doc like yours but he was a rheumatologist. He was the first one assigned to me from the hospital where I got the diagnosis, and I'm certain he had no idea about WG. He was a total jerk. Not intentionally, just scared to lose face for not knowing the disease, so he just acted big with nothing 'big' to back up the act. I also took my mom on my first visit to see him (I was diagnosed at 43, so it's not like I'm a little kid who can't understand) but he did the exact same thing. He spoke only to my mom, didn't make eye contact with me, asked my mom for my symptoms, etc. When I saw him I had just started the chemo and steroids a couple/few weeks earlier and they were still really knocking me out (eventually the drugs become a non issue but at first the chemo would knock me flat on my butt) and I mentioned to him how hard they're affecting me, so in his report to my GP he wrote down that I'm having mental/cognitive issues from the disease. I saw this only a little while ago, years later, and I so want to go back there and smack him. His karma. Not mine.

I can say with certainty that the hardest period of this disease process is while you're looking for a diagnosis. When dumb-bunny docs keep telling you nothing is wrong, that it's maybe all in your head, that maybe you need to see a psychiatrist. Meanwhile you know you're hurting, you feel like you're getting taken over bit by bit, and the guys who are supposed to help you are only making it worse. Once you get the diagnosis for sure (I think it's more often than not verified by a biopsy) then despite the nature of the disease, you're in a better head space because you know the beast you gotta fight, and you're vindicated with proof that you weren't nuts. It's great going back to docs who missed it and told you nothing is wrong and being physical proof of their ineptitude.

There's a great book that can really empower. It's called "The Patient Will See You Now" and highlights the fact that they, docs, work for us. Not the other way around, like so many act. We call the shots. We have last say. We can change docs. If you fall under the care of one good doc (and it is up to you, you can go back to your GP and insist that he refer you to a specialist in your disease category ... he has to oblige... all he has to do is take the referral letter he wrote the other doc and resend it to a Vasc specialist, don't let him tell you otherwise, it's his job.)

I love that your bro was firm with him. He sounds like he needs to be dealt with that way, and it sounds like he's not even interested if he didn't even bother to look up Wegener's after he heard that you possibly have it. Maybe you can find out where the female doctor who replaced him works out of and change to her as your GP.

YOU ARE NOT GOING CRAZY!!!! Please remember that. The weak egos will try and make you feel that way but it's not the case. It sucks that we have to stand up to a profession that nobody wants to stand up to, especially at our weakest and most vulnerable time, but that is part of the gift of Wegener's. I would never have felt so comfortable talking to docs in their own language before this diagnosis. Now I'm surrounded by good docs who I can confer with and we can make decisions together based on good risk/benefit considerations. Once you get a good specialist too, they tend to surround themselves with like minded docs, so then you have access to all the good ones. My rheumy here has referred me to some amazing docs for other things that pop up, and it's because she's amazing. Things can work out with the docs, and it just takes a little muscle and fortitude and poof, you'll see this as just another blip in the road.

I also agree with Lisa that maybe the COPD was a misdiagnosis and it was WG all along.

Biggest hugs possible. I hope that this all clears up quickly and that you get yourself in the middle of wonderful, intelligent, healing care (and away from your GP - he's bad news.)

P.S. - I didn't get a PM from you. Just so you know.

[marta]

Once again, everything Lisa said I second.
She is a wise woman and much better at expressing what I am thinking ;)

Take her advice, and use her connections.
All you need is to get into the system and start treating those symptoms.
Your current GP shouldn't get the privilege to treat you much more after this.
Not with the way he's handled/handling the situation.

[Susan55]

Hi Lisa

I did call and left a msg with my pulmonologist two days ago, but haven't heard back from her. I feel the pits! :( . I am doing all I can do to try and get in sooner but no luck yet. The doctor I will be seeing on Sept 25th, I've read the reviews on her and the reviews are not good. But we shall see when I go for my appointment.

One day at a time is all I can do right now and stay strong and keep smiling :)

I will keep you posted

[Susan55]

Hi Lisa

I am on the phone daily making calls to get in quicker but no such luck. I've also called my lung doctor who I 've been seening for many yrs now. All they did was take my phone number and said she would tell Dr. A Mcnamara ASAP. But it's been three days today and still haven't heard back. I just feel weak, fatigue, very sick to my stomach and just don't feel right.

I went to my E-Health which showed my blood results and then my family doctor called me in the day after the results came back. He said to me..."well after you coming to see me for over 2 - 3 yrs we finally know what is wrong with you and you need to start treatment ASAP and I will refer you to a doctor and he walked out of the room! We never discussed the illness or treatment! I left there in tears, this is how he is with his patients. When my brother went with me to see him a week later all he did was speak to my brother like I wasn't even in the room and asked my brother "is your sister stable" OMG..I almost fell off my chair!!!! I went into numb mode with anger. NOT once did he said oh your sister has WG and needs treatment..so I said blood test shows "positive" for WG and you said I need treatment asap and from what I have read the treatment is presidone and methotrexate he said yes that is the treatment.
I then asked why am I amnot getting an appointment right away, he said oh I faxed it over to Dr. Dhindsa but she is busy...so my brother said I would like it re faxed and he said I will put semi-urgent and re-fax it. OMG OMG OMG
This doctor of mine makes me feel like it's all in my head and it's not! I feel like I am going into circles with all of this. So, I am making all the calls I can at this time.

I wish I would make my own appointment with a doctor.

I don't know how to handle this anymore at this point! my blood test for PR3-ANCA came back saying "positive for WG" so this is all I have to go by for now

I just wish he would listen to me and move on this more quickly

I msg you back Lisa

hugs to you and everyone in the group! :)

[LisaT]

Ok, I just read these after sending you a couple of pm's and at this point, I'm really angry on your behalf. With the experts and excellent care we have at our disposal in BC, there is NO WAY you should be waiting in fear, feeling crappy and possibly getring more ill. I'm going to ask Dr. Kur or his staff what you can do and who you can call to be seen and treated urgently. But they're not in until Tuesday either. If you still feel this way or any worse on the weekend, please go to the ER. Bring your brother or another support person who can help to advocate for you. It's hard to be assertive on your own behalf when you have no energy. In addition, as you've already experienced, some (bad) doctors treat patients (especially female patients) like infants who need a third party to speak on their behalf. Have your support person take notes, ask questions, and demand immediate care and treatment. If they say go home and wait until you hear from doctors, tell them no, this is a fast-moving disease that can destroy my organs while I follow that advice, my general physician has negligently failed to provide any treatment while I await my specialist appointment, I'm getting worse by the day, and I feel too unwell to go home without at least a big dose of prednisone to prevent permanent damage that could have me back here in kidney failure or other irreversible damage. (Don't freak out that I'm saying this. I don't believe it will happen to you; but you may need to mention the worst case scenario for an intern or ER doc to understand the urgency, and ensure you see someone who knows what to do). I believe the worst damage and most dangerous scenarios occur because the average doc still knows nothing or very little about our disease. My GP is amazing and works with me, learns, and refers me to whomever I ask. However, I'm her first and only wegeners patient. That may be the case for your doctor, and even an ER doctor. You or your support person should make them understand that waiting a month is simply too risky. Worded correctly, they will understand that this is also an issue of potential liability for the hospital should they turn you away. The weakness and overall ill feeling mean active disease, and if I were you or your support person, I'd start hitting clinics and/or ERs until someone hooks you up with a nice big dose of at least prednisone. I believe Dr. Kur's office has a voicemail with numbers of rheumatologists on call in urgent circumstances. Maybe try one of them? I pm'd you his main number. Ask if they can tell you how or from whom to get a referral on the weekend, or whether they can meet you at an ER? It's so frustrating that this is how the system works even when the doctors know or should know the dangers of waiting.

Keep us posted, and try not to worry but also insist on getting help sooner. Hugs. Sorry you have to fight to be seen when you should be resting and conserving your energy to heal. If I ever get better enough to do more than barely keep my household amd kids' liveable running I need to become a patient advocate and kick some negligent doctor a**, LOL! ������

[Alysia]

LisaT you are so amazing with your wise & useful advices and priceless support. I am so happy to read you here and I love you ❤ welcome back ❤
One point: I might be wrong, others please correct me: I think that before taking a biopsy it is better not to take any pred in order not to mask the disease ? Not sure... ?

[Susan55]

Yes, Lisa is amazing! I am new on this site and Lisa is such a huge help.

[Susan55]

I just tried calling walk in clinics and believe it or not their closed today! Yes, I promise to go to the ER if it gets worse. My brother is on the island (not in town) so no one to go with me right now. I'm still searching for any clinics that may be opened today, just maybe a dr there will listen to me. Finger's crossed and I think this is going to be a busy day. I appreciate you calling Dr. Kur's office on Tuesday. I did try but no luck

[LisaT]

Thanks, Alysia and Susan. Others really helped me at the stage Susan is at. It's the least I can do. And, love you too. :love:

Good point Alysia, i do think prednisone can change the biopsy result. Then they should do the biopsy right away so she can get started on treatment. I will ask Dr. Kur who can take her quickly and how, when I see him tomorrow. He doesn't do a biopsy if they confirm through bloodwork amd symptoms. Maybe it isnt necessary.

[Susan55]

Yes Please do let me know if Dr. Kur and see him..

[Susan55]

Hello Alysia

I did call her office last week but never heard back from her or anyone. HMMMM...I'm at the point of trying to be heard...just wait it out till Sept 25. Went to the ER Sept 2nd and after 6 hrs, they send me home and the doctor in the ER is sending referral to Jim Patterson "Internal Medicine Dr. in quick access clinic" who knows how long this will take...we shall see, fingers crossed them call me tomorrow...hugs to all of you on this wonderful site <3

[LisaT]

I posted a new reply and a pm to you this morning Susan. I can't find them anywhere now! Sorry if you didn't receive. Dr. Kur's nurse said to have your GP call his office and they will get you in to his rapid access clinic. 604-875-0880. If your doctor won't do it, ask your pulmonoligist. But either should you need treatment. If your doc refuses to help when you know a quicker way to get treatment that is pure negligence with this disease. Their infusion clinic and staff are amazing. Can't say enough good things about how pleasant they made a new and somewhat nerve wracking experience of getting my first infusion. More later after a good long nap. I'm so sorry you didn't get this info earlier. I don't know what happened. I was a bit dopey from benadryl but I was sure I had posted.

[Susan55]

I received your msg this morning and got on the phone right away. First I would like to say THANK YOU for speaking to your doctor, your amazing and I truly appreciate it Lisa.
I called my family doctor's office and they called back saying I didn't need a referral as he is sending me to see someone already! OMG OMG OMG
Then I called my lung dr and left a msg. I asked to speak with her but she is very busy I was told. When I went to the ER a few days ago the doctor there make a referral for me to go see a doctor as the Jim Pattison "internal Medicine Rapid Access Clinic" I was hoping to get a call today but didn't.
I am so frustrated that I can't get in sooner to see a doctor to get the diagnose and move on with treatment. I feel I am going in circles and hitting brick walls no matter which way I turn. So, just sitting back and waiting for the phone to ring.

I can't take the mid back pain any more, very sick to my stomach, not hungry, stomach hurts when I eat and just don't feel well and oh the fatigue is bad

One day at a time and try to smile each day until I get this all dealt with..hope it comes soon

Thanks again Lisa and hope the new treatment works well for you xoxoxox

[LisaT]

Hi Susan, no problem at all.

Did your doctor tell you who he's sending you to and when they would call? It doesn't make sense that you didn't hear from them if they finally made an urgent referral. Same with the rapid access clinic, emphasis on RAPID. I know it's frustrating and exhausting. I would call them all again until someone understands that you can't wait another day and sees you right away. You should not be suffering so when your first couple doses of prednisone will give you some relief, and as soon as they sort out which other meds to give you, you will hopefully be on your way to feeling better. Being busy is not a good enough reason for a doctor or their staff to ignore or refuse to speak to someone urgently inneed of care! I would call back the pulmonologist's office amd tell the staff that, busy or not, she MUST call you back, you've been diagnosed with Wegener's and given no treatment and are getting worse. Explain the trouble you're having breathig and at there are rapid access clinics you can be seen at right away and just need a referral. It's unconscionable that you're being brushed off and treated like a nuisance when medical professionals know or should know that time is absolutely of the essence here.

I personally think you may be better off at Dr. Kur's rapid access clinic than an internal medicine clinic, as he and his staff have a lot of experience with Wegener's patients, and rheumatology is the specialty that does so. They know exactly how to apply for and get you funding for the medications you'll need, amd have a beautiful cozy infusion suite set up to monitor and carefully administer the doses. I felt in very good hands there yesterday and would love to see you get that same care and peace of mind. I didn't have to deal with any administrative details or red tape regarding the funding for rituximab, they did it all for me in coordination with the drug company, and got it covered by MSP, my extended health insirer, and the drug company's program that fills the gap for people on disability income. But maybe your doctor is not sure of the diagnosis and feels your GI issues need an internal medicine doc. Either way, someone just needs to see you asap. Please let me know if i can help in some way. I'm just home resting. Since your doctor treated you like a child and spoke to your brother about you rather than speaking to you, maybe it would help if your brother called and said, my sister is getting worse, she needs to be seen urgently, there's a Wegeners specialist who can see her urgently and you need to make the referral NOW. We can't wait another day and will hold you responsible if she suffers any permanent damage while waiting for you to get her some help and treatment. It's worth a try.

[Susan55]

Hi Lisa

Well some good news!!!!! I just called the Rheumatologists I am to see on Sept 25th " Dr. Dhindsa" in Surrey. I just called there and told them I was in the ER on the week-end and the doctors there said I need to see her ASAP. I now have an appointment on Monday Sept 11 at 9:30 :)

Wow, I am getting in soon. The reviews on this doctor are not good, so if I don't like her I will go see Dr. Kur for a second opinion. I am just happy I will get in on Monday. Hope she doesn't treat me like I am crazy. Her reviews is she doesn't listen.

I am just wondering if I go to see Dr.Kur would it be days or weeks to get in, this is the problem I am having...grrrr

I am so shocked how I've gotten the run around and no calls back from doctors. Yes, my blood works states positive for WG, but my family doctor said it still has to be confirmed by a rheumatologist so we shall see what Dr. Dhindsa says on Monday. I hope and pray she is NOT rude as all the reviews state she is.

Now, it's count down for me to get an answer. I don't have the runny nose...I have back pain, chest tightness and SOB that just comes and goes, feet and legs feel tight and hurt. Hips, knees, elbows and shoulders hurt so bad. I get dizzy very easily and want to pass out. Very sick to my stomach and just not hungry. Just don't feel good, hard to explain.

I'm sure my COPD is not helping if I do have WG. Did you experience dizzy spells? OH and when I get my stomach swells and hurts so bad. I have crazy things happening. I've had blood in my urine for over 3 yrs and doctors say some people just had that, I don't think so.

I will see if my brother can go with me, but so afraid this dr won't listen to me...so we need to find out just how fast I can get in to see Dr.Kur..(if I can get a doctor referral that is)

I hope your having a good day today Lisa. Do you have people around to help you? Are you able to drive? I haven't driven since February as I get these crazy dizzy spells
You will be the first one I will msg to tell you about my dr's appointment on Monday.
A part of me thinks it's maybe no WG as I don't have the runny nose,oh I don't know anymore. My head is spinning in circles right now. Over the last two years my family doctor has me believing at times I am nuts...lol Trying to be funny

Well I am so happy right now, Monday is the big day for me :)

[Alysia]

Hi Sue, I am glad that they can see you on Monday and that you can have the alternative of Lisa's dr.
Meantime I think that you must check your creatinine in your blood test. When was the last time they checked it ? How much it was ? If it was more then 2-3 weeks ago or above the normal, ask your family dr to give you referal to check it asap so that you can have the result before Monday. Dont take "no" for an answer.

[Susan55]

Hi Alysia

I just checked my E-Health and when I was in the ER on the week-end they checked for it and from what I can see it's normal.
Here it is:



Creatinine was 72 , so I am guessing it was normal

[Alysia]

Hi Alysia

I just checked my E-Health and when I was in the ER on the week-end they checked for it and from what I can see it's normal.
Here it is:


Creatinine was 72 , so I am guessing it was normal






Yes. It is normal. Thanks God.

[Susan55]

I just read the results again and it reads.

Positive for PR3-ANCA and neg MPO-ANCA by EIA. This pattern is seen in patients with active WG and not involving the kidneys

[Alysia]

I just read the results again and it reads.

Positive for PR3-ANCA and neg MPO-ANCA by EIA. This pattern is seen in patients with active WG and not involving the kidneys

Positive C-anca which goes with positive PR3 - is found among people who have WG and also among those who have Crohn's disease, btw. I am not sure if it indicates anything about kidneys involvement or not.

P-anca which goes with MPO is not found among people with WG but among people with other vasculitis diseases, like mpa.

[Susan55]

HI Alysia

It's amazing how much you know about this. My head is spinning and trying to understand it all. So what is the difference from WG vs MPA?

I just can't wait for my appointment on Monday with rheumy and see what she says. Then I got a call yesterday for another appointment to see "Internal Medicine" doctor for Monday Sept 18th. I am keeping both appointments and see if they say the same thing. This has been going on for so long and I don't think having two opinions would hurt.

Sorry for all my questions I keep asking. I want an answer so bad so I can deal with what ever is happening.

Thank you Alysia for helping in answering so many questions.

Love this group

[Alysia]

MPA is another kind of vasculitis which is very similar to WG. Check here https://www.hopkinsvasculitis.org/types-vasculitis/microscopic-polyangiitis/
If you scroll down you will see a comparison between WG/GPA and MPA. There is a lot in common. Also the treatments.
Generally, I think that in MPA there is more cases of involvement of the kidneys then we have. And they dont have our saddle nose.

[LisaT]

Don't be afraid to ask the doctor if she has GPA patients and ask her to refer you to Dr. Kur. Rapid access usually means within a week. I think I was in a couple of days later when my dr referred me to him for the RA. Unfortunately not all doctors seem to know about he rapid access clinics. I'm so glad you're getting in to someone and hopefully getting answers! Alysia knows tons and is such a good support. �� I don't know how she fits in all the reading and answering with work and her own symptoms.

[Susan55]

Thank you for the link. I am reading up on it now, this has a bit more of my symptoms. Yes, so much in common, it must be hard for the doctors to determine which one a person has.

I just now received a call "FINALLY" from my rheumy OMG she called (her office) and said oh we can get you in earlier in 2 weeks. I said oh I have an appointment this coming Monday, oh they said. Wow they don't even know what the hell they are doing. Let's hope the doctor is more focused, haha

[Susan55]

I found your reply finally :) Yes, that is going to be the first question I ask if she has GPA patients , if not I will go to Dr.Kur

Just wondering the quick access clinic I am going to on Sept 11 with internal medicine doctors, if they will know more then this doctor on Monday. I shall soon find out. Count down now, going to try and keep busy over the week-end to pass the time.

I just found out my son is flying in from San Fran on Oct 5th to the 9th to visit. I will know what I have by then and tell him. I haven't said anything to him yet, I wanted to make sure 100% what I have to share with my two grown children in the states.

Yes, Alysia is awesome! and a great support person like your self Lisa...thank you both for listening and everyone else in the group

hugs to everyone

[Susan55]

Well today is the big day for me. Seeing the rheumy at 9:30 and my brother is going with me to help with questions and take notes. I've been up since 4 am. After reading all the bad reviews on this dr I have fear of hearing once again - "come back in two weeks" as my family Dr. told me for the last two years.

I have all my questions ready, test results she may need to see, med's etc. I have cleaned my whole house (well it's not big thank god, lol). I just want to get there and get some answers.

Hope everyone is doing well and have a great day

[Pete]

Be persistent with your questions and make sure you understand the answers. Confusion is not an acceptable option.

Good luck!!

[LisaT]

Good luck, Susan! Let us know how it goes. I'm glad youre finally seeing simeine and have a support person with you. You sound prepared and strong. Go get your answers!

[Younts]

Hi Jon. Good introduction.