The scariest 14 months of my life and then Wegeners

[Vero84]

Hello everyone, I’m new at all of this. I am 34 years old. It has been very scary these few months but finally I got diagnosed. At moments I’m just so happy that at least I have an answer finally even though I have suffered so much mentally. I started with numbness on my fingers and toes from October 2017. I work as a Medical Assistant in a hospital clinic. Checking my own sugar, blood pressure and pulse at work when I could to find out if something was wrong. Nothing was coming out bad. I ended up asking one of the doctors that I work with to see me for a physical. My pulse was around 117 I remember but nothing else was weird. Doctor didn’t see anything abnormal in the labs either. She diagnosed me with mental stress because of work, and sent me to a Psychologist. After 3 months, signs of anxiety at night, pain on my chest, numbness on toes and hands and ear pain. I went to a walking clinic after I couldn’t with my ear pain no more. I had positive Strep. Lord... what a mistake having that, they treated me for that for a long time before they came with Wegeners. Because strep never left my system after months. So it threw everyone off. On May 2018 i remember I was dragging myself to work, at this point, my knees were in a lot of pain, stiffness I couldn’t bent. One day I tried going down the stairs at the end of my day and I just gave up and started crying. Mentally this was it, I literally couldn’t walk! I called my husband and asked him to please come for me that I couldn’t give one more step. When I got home and guys I was very mentally strong to keep going. I was so scared to think I was so sick that I pushed myself until the end. He got me into bed and when I turned my elbows were full of lesions, red dots all over. This was in one day. So quick. We rushed to the hospital I couldn’t walk, now my neck and shoulders were stiff and if someone tried to carry me I would scream of pain. They gave me steroids in IV and pain meds. Hospitalized for 7 days and still no signs of Vasculitis. So they treated me for Strep and RA until they sort it out. After they did the Anca test it took 15 days for an answer I’m not sure why. After I came out of the hospital I had to go see a Rheumatologist, he said I’m sorry you might have Wegeners but maybe the strep is throwing it off and it’s a false positive sent me to a Infection disease specialist and she put me in penicillin shot once a month for strep. Now I was stable, but bleeding through my nose at time. He also referred me to another doctor because he said if it turned to be really Wegeners, it was a rare disease and he knew very little of it. Dr. Ariel Teitel in Manhattan, New York. What an excellent Rheumatologist in weird diseases. I actually didn’t believe him at first. I was more focused on having strep and that all was going to be okay soon. I never had a big flair again but continued with pain until September 2018. When my eye got red, but still able to walk and be okay, I saw Dr Teitel and he said my labs were crazy now, and kidneys were at risk and to have a biopsy. I said no, I’m feeling fine, I have gotten a little of high diabetes now maybe protein is in my kidneys for that. No one is taking care of my sugar. I was debating Bc I was in such denial, no one had given me a straight answer for months and I was just so tired of it. But he said please listen to me, that eye is red. I said, a kid had pink eye 2 days ago at work, it’s pink eye. He said please go to the hospital, get the biopsy done! He said to me “if you don’t listen to me, you might have top 6 months of living time this Wegeners is NOT A JOKE” I cried like a baby! I listened to him I went to the hospital again. They did the biopsy of the kidneys, and checked my eyes. He was right. I had positive Wegeners Vasculitis. Biopsy was positive. They rushed me to quimo. At this time I couldn’t even have time to breathe, the look on my husbands eyes was unforgettable, we were all at shocked. Family all scared and no one understood what was going on. Was I going to die tomorrow, next week? What was going on, I was so healthy before this! They explained to me a few treatments, thankfully Rtx was the best that I could choose from since it has no effects like the other ones. I took it well. 6 hours of Infusion. I was just mentally stressed that i was going through so much but physically I was okay. Two weeks later on Nov 3 was the second infusion and now I have to wait 6 months for my next. How have I been feeling? GREAT! 60mg of Prednisone, now i am down to 40mg and every 2 weeks he will keep tapping down until he sees I’m doing better. Omeprazole for stomach, Lisinopril, 3 x a week antibiotics and very important Vitamin D3 for your bones. Now I have been feeling for the past 2 weeks a lil tired IÂ’m not sure if it’s the tapping down of the prednisone. IÂ’ve been moody and crying again. I’m not seeing any other doctors but I’m thinking I should go see a Pshycologist just for everything I’ve been through, sometimes I feel so down and scared but I have to look into that still. This has been a very hard process for me. I have a 9 yr old princess that has no idea and I just look at her so little still and I cannot give up. I have to give everything of me and get up. I still need strength and I’m learning as I go. I read some of your posts guys, you guys are so great keep it going. We the weak ones need you. Best of luck to all.

Veronica

[andrew]

Hi Veronica thanks for your story. You've been through the works! You're not giving up either which is great despite how you're feeling. Many of us have been to see a psychologist at some stage. It can really help a lot but make sure you get a good one that 'fits' you - one you're comfortable with and you feel can help.

You're welcome to vent here any time too! Sorry your post got delayed. There are some spam prevention methods running that sometimes pick up things that shouldn't be and hold them for my review. I was a but slow on this one but you should be good to go now :)

Andrew

[Masha]

Oh Veronica, After reading your post I just wanted to reach out and give you a hug. You have really been through the ringer. If you did not feel bonkers by now you would NOT be normal. Also, the prednisone really alters your moods, makes you sleepless and hungry too. It sounds like your current doctor has you on the right path. I get four weeks of Rituxan infusion every four months. Initially, when I didn’t think things were working, my doctors told me that there is no one cure all for this disease. My Rheumatologist and my ENT both reassured me they would find the right protocol that works for me.
I will be 69 years old this January and was only diagnosed two years ago. But my doctors tell me they suspect I had Wegeners for years. I had continuous colds and pneumonia. So my diagnosis was finally a relief.
It is wonderful you found this site. Wegeners comes in so many different ways, and there are people here who can identify with your symptoms.
I have said this before and sound like a broken record. Of course you are frightened and cry. Give yourself a break and indulge in a pity party. If you need help for what this has done to you emotionally then go for it. As Andrew said, make sure you see the right doctor for this too.
Masha

[Vero84]

Hi Veronica thanks for your story. You've been through the works! You're not giving up either which is great despite how you're feeling. Many of us have been to see a psychologist at some stage. It can really help a lot but make sure you get a good one that 'fits' you - one you're comfortable with and you feel can help.

You're welcome to vent here any time too! Sorry your post got delayed. There are some spam prevention methods running that sometimes pick up things that shouldn't be and hold them for my review. I was a but slow on this one but you should be good to go now :)

Andrew

Hi Andrew, I will look into a good one I hope I have luck. Thanks for your reply. It means a lot to me that I’m not alone.

V

[Vero84]

Hi Masha, hug received!! You know I had colds and pneumonia in the past as well maybe I had this also for a long time. I read around posts that a lot of people were in stress around the time they got really sick. Maybe that throws a big part too. I will definitely take that pity party into consideration because boy I really need it. Family has been very warming these months I give thanks to God about that. Thank you for your reply Masha. And good luck to you as well and your treatment.

[[email protected]]

Hi Veronica thanks for your story. You've been through the works! You're not giving up either which is great despite how you're feeling. Many of us have been to see a psychologist at some stage. It can really help a lot but make sure you get a good one that 'fits' you - one you're comfortable with and you feel can help.

You're welcome to vent here any time too! Sorry your post got delayed. There are some spam prevention methods running that sometimes pick up things that shouldn't be and hold them for my review. I was a but slow on this one but you should be good to go now :)

Andrew

Yes Veronica! Very detailed description. Glad you’re here on the forum. I’m new too, so welcome.

Rituxan is a “biological” drug developed to treat Vasculitis and other conditions relatively recently. Rituxan sees to work well for most without the consistent bad side effects of earlier treatments. Prednisone I’m not sure about but many patients seem to require it. Having been on large doses of Prednisone must say the side effects are difficult.

[John S]

I relate to your story. I was in the hospital at Christmas 2015 with an unknown disease. The family gathered around my bed and I just felt like dying. Enter the WEgener's diagnosis and Rituxin. Today I feel like I could keep going like the Energizer bunny.

Welcome to the forum.

[[email protected]]

Yes. Alł too familiar story. I was hospitalized following seizures at home, taken by ambulance to an unknown ER, where they saved my life repeatedly with uncontrollable seizures - 3 anti-seizure drugs, intubation, intensive care, etc. I was unconscious & didn’t know what was happening for about 2 weeks. Looking back I believe they “should” have put me on Rituxan infusions prophylactically. I was on meds that covered the possible indications of a flare until recently but “should” have recognized these personally before now. Will enumerate these for those interested.

[richard052018]

I feel your pain. Lord, I feel your pain. You have a 9 year old princess. Mine is 7. I just pray we both get to watch our daughters grow up (and be somewhat functional during that time). The more I see people who have survived this for 20+ years, the more I have hope.


Pink eye, elbow nodules, and elevated heart rate: I had all three symptoms. Combined with bad inflammation numbers I wish doctors would go straight to Vasculitis. No excuse for doctors given the ubiquity of Medical information in 2018. I am so thankful I found a skilled pulmonologist who diagnosed me early. You are lucky you had a doctor that encouraged you to get that kidney biopsy as well.


RTX has worked for most (cleared up my lungs, I had a terrible hemmorage), and I pray it will work for you.


You have found a home here.

[Vero84]

I relate to your story. I was in the hospital at Christmas 2015 with an unknown disease. The family gathered around my bed and I just felt like dying. Enter the WEgener's diagnosis and Rituxin. Today I feel like I could keep going like the Energizer bunny.

Welcome to the forum.

Im sorry John that you went through the same thing, and on Christmas time, oh my! Believe me when I say I could understand what you went through now. Like the energizer bunny is right 😄 I cannot take a rest at times, this Prednisone has me going and going. Lol. Hoping you are doing okay.

[Vero84]

Hi Kwnorton thanks for replying and sharing. Yes please enumerate when you can. I’m not sure why they wouldn’t give you all alternative of treatment for something so serious as soon as they could. Im reading your experience and I’m shaking. Just the though of ICU and tubbing. How are you feeling now? Are you getting Rtx ?

And yes I did a very detailed post because when I read the majority of the stories when I recently enter the forums, I wished I could read how it started if you guys went emotionally stressed like I did. Im sorry guys if it was a lot I just needed to vent too. And like you guys say in some post, no one understands how you feel. You want to open a topic and you look so healthy that everyone just looks at you like nothing is really wrong 😞. It’s so overwhelming to try to explain how bad you feel and how good you look.

[Vero84]

Hi Richard052018, thank you so much for your reply. You made my eyes watery. I will pray hard for more time for all of us too. I’m so happy your lungs are cleared and your hemmorage. Thanks for your good wishes.

[John S]

Im sorry John that you went through the same thing, and on Christmas time, oh my! Believe me when I say I could understand what you went through now. Like the energizer bunny is right  I cannot take a rest at times, this Prednisone has me going and going. Lol. Hoping you are doing okay.

I am off odf the prednisone now, thank God. I sleep better and go better and I've lost some weight, including the moon face.

[Alysia]

Hi Kwnorton thanks for replying and sharing. Yes please enumerate when you can. I’m not sure why they wouldn’t give you all alternative of treatment for something so serious as soon as they could. Im reading your experience and I’m shaking. Just the though of ICU and tubbing. How are you feeling now? Are you getting Rtx ?

And yes I did a very detailed post because when I read the majority of the stories when I recently enter the forums, I wished I could read how it started if you guys went emotionally stressed like I did. Im sorry guys if it was a lot I just needed to vent too. And like you guys say in some post, no one understands how you feel. You want to open a topic and you look so healthy that everyone just looks at you like nothing is really wrong . It’s so overwhelming to try to explain how bad you feel and how good you look.

Please dont be sorry for sharing your feelings. We understand and we care and we are here for you. Welcome to the family Veronica.

[gilders]

Welcome Veronica,
Michelle is correct, pred causes real mood swings. I didn't seem to suffer with this side from 17 until my mid 30's, but since then (I'm now 41) Pred drives me crazy! Plus you also have genuine reasons to be stressed.

We all need to keep a close eye on our health, but when I hear that people have kidney involvement, the alarm bells really start to ring.

[[email protected]]

Hi Kwnorton thanks for replying and sharing. Yes please enumerate when you can. I’m not sure why they wouldn’t give you all alternative of treatment for something so serious as soon as they could. Im reading your experience and I’m shaking. Just the though of ICU and tubbing. How are you feeling now? Are you getting Rtx ?

And yes I did a very detailed post because when I read the majority of the stories when I recently enter the forums, I wished I could read how it started if you guys went emotionally stressed like I did. Im sorry guys if it was a lot I just needed to vent too. And like you guys say in some post, no one understands how you feel. You want to open a topic and you look so healthy that everyone just looks at you like nothing is really wrong . It’s so overwhelming to try to explain how bad you feel and how good you look.
It is difficult to understand why they would not treat a patient with seizures (of “unknown” origin) but in a patient with a clear history of CNS/brain Vasculitis successfully treated with RTX (plus 20+ year systemic Vasculitis history), prophylactically with Rituxan along with anti-seizure drugs. My fancy Vanderbilt Neurologist (a seizure “expert”) still doesn’t get the link. Says he doesn’t know “anything” about Vasculitis! Guess not!
Illusrates that unless we patients are educated, informed, conscious and breathing enough to diagnosis our own flares we may remain untreated. It is now almost 7 months later that I’m returning to my Los Angeles Rheumatologist who recognizes right off the bat that this is CNS vasculitis relapse and writes an immediate order for RTX. I will likely begin infusions next week.
I’m thinking of writing a book on my family’s roller coaster ride with Vasculitis. Not sure anyone would read it but it may be good therapy.
:love:

[Vero84]

I am off odf the prednisone now, thank God. I sleep better and go better and I've lost some weight, including the moon face.

Thank God you are off the Prednisone. I have gained so much weight in 2 months. The moon face John! The moon face it’s bad! But im tapped down to 30mg this week. I feel better already. I’m not craving to eat every hour thank God. My knees hurt a litlle still and I’m scared to jump in the machine to start exercising just yet but I really want to start working out soon. I’m cheering to be off of these meds soon.

[Vero84]

Please dont be sorry for sharing your feelings. We understand and we care and we are here for you. Welcome to the family Veronica.

Thanks so much Alysia 😘🙏🏻

[Vero84]

Welcome Veronica,
Michelle is correct, pred causes real mood swings. I didn't seem to suffer with this side from 17 until my mid 30's, but since then (I'm now 41) Pred drives me crazy! Plus you also have genuine reasons to be stressed.

We all need to keep a close eye on our health, but when I hear that people have kidney involvement, the alarm bells really start to ring.


Hi Gilders, thanks for writing. I know I’m getting to understand Prednisone now, it’s a very strong medication. Who knew this pill will have so much different effects on someone. It’s horrible! I get acne too on my chest and like I said having to be so fit, back in my normal life and so healthy, mentally emotionally this easily can throw you off.
Kidneys were fine for months after my first flair back in May, just in September blood work showed something, I feel if they had put me in treatment sooner none of this would had happened. I was so stressed at the fact that they had me with no clear diagnosis for months. Now my kidneys are at 50% working only and i have to be really careful. And like the doctor sais... wait... wait for it to all get better. Unfortunately yes it rings a big bell. I’m scared truly.

[Vero84]

It is difficult to understand why they would not treat a patient with seizures (of “unknown” origin) but in a patient with a clear history of CNS/brain Vasculitis successfully treated with RTX (plus 20+ year systemic Vasculitis history), prophylactically with Rituxan along with anti-seizure drugs. My fancy Vanderbilt Neurologist (a seizure “expert”) still doesn’t get the link. Says he doesn’t know “anything” about Vasculitis! Guess not!
Illusrates that unless we patients are educated, informed, conscious and breathing enough to diagnosis our own flares we may remain untreated. It is now almost 7 months later that I’m returning to my Los Angeles Rheumatologist who recognizes right off the bat that this is CNS vasculitis relapse and writes an immediate order for RTX. I will likely begin infusions next week.
I’m thinking of writing a book on my family’s roller coaster ride with Vasculitis. Not sure anyone would read it but it may be good therapy.
:love:

I am so mad for you, because it so relates to me at the beginning as well. I was so defensive for the last months before the last hospitalization, because I remember I was with my first flare and my mother had given me a cane to support my weight bc I couldn’t walk. And I go to this stupid Rheumatologist lady in Queens, NY and she sais to me “go home with 10mg of Prednisone. Come back in 2 weeks for results of blood”. Sents me to a Shoulders nerve test next door and 2 days later I was with lesions on my legs and almost at 100% body paralyzed. Tell me how could they do that to serious ill patients. Once I get to the hospital a Rheumatologist in the ER tells me “why would she put you only on 10mg? Is she crazy? I’m mentally broken kwnorton. We have to understand that we have to do the research ourselves if we want good doctors that know what they are doing! After what happened I learned that I have to make my own research. And it shouldn’t be like this, but we have to do it ourselves if we want to do it right. And this is why I’m so defensive in doctors telling me anything this days. I mean I work in the medical field and thank God I know a lil bit how to get in my ways, but what about the people who are going through this with no sence in how to start. It’s so scary. I feel for you so much. You will see all will be okay after you get that treatment. I’m still upset they haven’t rushed you yet. This is so important to start STAT. I would definitely read your book! It will make me cry I know but it will make us stronger. I need a good Psychiatrist too, I need to get on that next week.

Best of luck ❤️ Keep us posted

[[email protected]]

Thanks for your response Vera. This will be my 7th Rituxan treatment so I do expect to be feeling better soon. I hope you’re off your Prednisone soon. Since you’ll read my book perhaps I will get on with it sooner.
Being on this forum confirms what I’ve learned as a Vasculitis patient & as the mother of a Vasculitis patient for 20 long years of this - dealing with this disease requires infinite patience and requires the ability to act quickly at times as well. I realize I was too patient with my Nashville drs & waited too long to seek proper care. It’s very difficult to put up with ignorance from our doctors and all too easy to become defensive.
At one time I was a premed student and worked in the field. This has given me a few skills to research with but hasn’t made it much easier to be a patient. :sad:

[NatriceRomeo]

Hi Veronica!
I’m sure it’s surreal to have all this happen to you and so quickly! It’s odd-no one understands what your going through & can feel very lonely. Then you found us! Welcome!
I honestly don’t remember how I felt before getting this disease! I have had it over half my life. The longest I have been off medication is 4 months since then. That being said this disease can quite easily take over your life. I work hard to try and live as normal a life as possible. I hope all these awesome people here have made you feel welcome & you do not feel so overwhelmed and alone.
Natty


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[drz]

The most important lesson I learned from my experience in dealing with Wegs was to trust your instincts and persist until you get an adequate explanation and diagnosis for whatever symptom or issue is causing you concern. I spent a couple years chasing my initial symptoms of Wegs by going from one specialist to another without getting any help or correct diagnosis. I have also had to fire a few doctors and search for better ones to get the care I believe I need and some times it is very difficult to find good care and get the help you need. I have in the past got bad advice that would have been very dangerous for my health if I had followed it but I was lucky and able to find a better resource and get the right care to avoid potentially serious problems. But some times it is hard to know which advice is best for you especially when it conflicts.

Many years ago I had an infection in my mastoid from a recurrent cholesteatoma. One doctor said if they operated on it before the infection was cleared up it would go into my brain and kill me. Another surgeon said if they didn't operate soon it would spread to my brain and kill me. So I got a third opinion from my local family doctor who admitted he was no expert or ENT surgeon but he and I thought the operations was the best option so I did it. Later the first surgeon admitted he was having a bad day and had me confused with other patients he saw that day who only had a few months left to live.

I once sought out a new doctor telling them about my problem or concern for which other doctors had no explanation and challenging him by saying other doctors have told me what it isn't but I need someone smarter or someone willing to work harder to find out what it is and tell me what i need to do about it if anything. It took him a while but he sorted it out and relieved my concerns.

My litmus test for a good physician is some one who can listen to me and respects my opinions and preferences about my care,and is willing to consult with other experts who may have more experience in dealing with the issue at hand. A good physician is aware of their limitations and willing to refer you or consult with other experts about your care. I believe I am alive today only because my care team consulted with several national GPA experts about my care and used their recommendations.

I believe we need to be able to trust our care team in order to get the maximum benefits from our treatment.

[Vero84]

Hi Veronica!
I’m sure it’s surreal to have all this happen to you and so quickly! It’s odd-no one understands what your going through & can feel very lonely. Then you found us! Welcome!
I honestly don’t remember how I felt before getting this disease! I have had it over half my life. The longest I have been off medication is 4 months since then. That being said this disease can quite easily take over your life. I work hard to try and live as normal a life as possible. I hope all these awesome people here have made you feel welcome & you do not feel so overwhelmed and alone.
Natty


Sent from my iPhone using Tapatalk

Hello Natty,

Thanks so much for your reply. It gets me so sad For your only 4 months off meds. I really wish in the near future you can be off longer than that. But im sure since you have had this for so long its so much easier now that you are probably used to it. I’m really fighting with this emotions And to be stronger. I really pray to get finally centered and used to all this pains and feelings. So I can win this mentally. I want to be strong! I did see so much love and comfort among you guys! Thank you. When I feel really bad I just open the posts and I re- read all your replies to feel better and to remember I’m not alone. Hope you are feeling good.

[Vero84]

The most important lesson I learned from my experience in dealing with Wegs was to trust your instincts and persist until you get an adequate explanation and diagnosis for whatever symptom or issue is causing you concern. I spent a couple years chasing my initial symptoms of Wegs by going from one specialist to another without getting any help or correct diagnosis. I have also had to fire a few doctors and search for better ones to get the care I believe I need and some times it is very difficult to find good care and get the help you need. I have in the past got bad advice that would have been very dangerous for my health if I had followed it but I was lucky and able to find a better resource and get the right care to avoid potentially serious problems. But some times it is hard to know which advice is best for you especially when it conflicts.

Many years ago I had an infection in my mastoid from a recurrent cholesteatoma. One doctor said if they operated on it before the infection was cleared up it would go into my brain and kill me. Another surgeon said if they didn't operate soon it would spread to my brain and kill me. So I got a third opinion from my local family doctor who admitted he was no expert or ENT surgeon but he and I thought the operations was the best option so I did it. Later the first surgeon admitted he was having a bad day and had me confused with other patients he saw that day who only had a few months left to live.

I once sought out a new doctor telling them about my problem or concern for which other doctors had no explanation and challenging him by saying other doctors have told me what it isn't but I need someone smarter or someone willing to work harder to find out what it is and tell me what i need to do about it if anything. It took him a while but he sorted it out and relieved my concerns.

My litmus test for a good physician is some one who can listen to me and respects my opinions and preferences about my care,and is willing to consult with other experts who may have more experience in dealing with the issue at hand. A good physician is aware of their limitations and willing to refer you or consult with other experts about your care. I believe I am alive today only because my care team consulted with several national GPA experts about my care and used their recommendations.

I believe we need to be able to trust our care team in order to get the maximum benefits from our treatment.

Hi Drz,

Wow... what a story. To think you had to go through all that. And I was here complaining about my bad luck with one doctor. We do deserve the best when it comes to hard diagnosis. I mean it’s a lot to handle only to deal with it, the least they can do is treat us the right way. My Kidney specialist was also bad. I agree in a team of experts communicating for a treatment. The kidney specialist refused to call anyone. I also believe we need to trust our doctors and we need to find them. I have a lot of research to do still.

Thank you!!!!

[mikecaven]

Veronica, here is some encouragement: l got WG when I was 34 in 1981, 37 years ago. I am now 71. I had relapse in 2008, 2010, and last month. I am on Prednisone again and had Rituximab infusion last week. Doing pretty good. Overall I am healthy. Lost some kidney function (37percent left). I have an active life. Right now am having some breathing/wheezing issues and weakness. My doctor is an expert Rheumatologist in Dallas, John Cush. I know the symptoms and get labs regularly. I may be one of the longest living. My email is:
[email protected]. There is hope!!


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[Masha]

Mike,
Your thread is wonderful. I have read threads from recently diagnosed people, who have young children and fear they will not be there to see them grow up. Your long term experience will surely give them encouragement. I, too, am of the silver generation-69 next month. I was not diagnosed until several years ago, although my doctors feel that I have had this disease for years. Yes, you are certainly the longest diagnosed patient I have heard. Good doctors make all the difference. As drz says we must be our own advocates when it comes to our doctors and our own health. We live as fully as we can, being cognizant of triggers. Mine is centered in the sinus and mouth, have also had more than my share of pneumonia. I avoid large crowds like the plague, because for me it is the plague.
Thank you for sharing your experiences. I am sure many read it and now see there is hope, and life with Wegeners.
Masha

[mikecaven]

Mike,
Your thread is wonderful. I have read threads from recently diagnosed people, who have young children and fear they will not be there to see them grow up. Your long term experience will surely give them encouragement. I, too, am of the silver generation-69 next month. I was not diagnosed until several years ago, although my doctors feel that I have had this disease for years. Yes, you are certainly the longest diagnosed patient I have heard. Good doctors make all the difference. As drz says we must be our own advocates when it comes to our doctors and our own health. We live as fully as we can, being cognizant of triggers. Mine is centered in the sinus and mouth, have also had more than my share of pneumonia. I avoid large crowds like the plague, because for me it is the plague.
Thank you for sharing your experiences. I am sure many read it and now see there is hope, and life with Wegeners.
Masha





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[[email protected]]

You’re right Masha, it’s not an easy journey and as a mother who has had a young child grow up with Vasculitis it’s terrifying. However our story is one of survival and encouragement to share with others. Physicians speak of treating us all for life and you speak of the importance of being our own advocates and of finding good doctors. I’m not a very good advocate really as it took at least 15 years for my son to be diagnosed and 10 years for myself - the disease took a toll over those untreated years. I still struggle with the “good” doctors part and am making appointments at one of the major centers as I write. Survival is it’s own reward at times although there are times the pain and suffering are overwhelming. Our own family has lived as normal a life as possible under the circumstances. My son has been one of the best musicians of his generation from before he was 5 (singer, songwriter, guitarist & recording artist) who has 4 albums out but the ravages of illness have precluded “true” success - he gets back up to succeed again only to fall. He’s worked with many of the “major” artists in Los Angeles & in Nashville in a constant struggle. We are going to tell our story although we are very private people in order to be of help to others.

[mikecaven]

This recent flare, per my Rheumatologist, is indeed Wegeners. But he has referred me to lung doctor who believes I also have severe sinusitis. She sent me for CTscan of lungs and sinuses. The CTscan shows severe sinusitis throughout sinuses with extreme blockages caused by polyps. She referred me to a Rhinologist ENT who said I had to have surgery to prevent breathing and future infections. So next Friday I will have this surgery. Hopeful that this will solve some problems Also on antibiotics for over two weeks and have been on Prednisone and recently had two Rituxin infusions. Today I feel great. Sharing this so you guys might consider CTscan of sinuses. I was shocked how much blockage could be so clearly seen throughout my head. I had two similar surgeries in early 1980’s. But new technologies/mini cameras are now helpful to make this surgery easier. Much of this sinus problem has been cause by WG. FYI: I have learned it is important to see an ENT who is a Rhinologist who is knowledgeable about WG, rather than a regular ENT. CT scan is imperative. I have had WG for 37 years! I am now 71.


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This recent flare, per my Rheumatologist, is indeed Wegeners. But he has referred me to lung doctor who believes I also have severe sinusitis. She sent me for CTscan of lungs and sinuses. The CTscan shows severe sinusitis throughout sinuses with extreme blockages caused by polyps. She referred me to a Rhinologist ENT who said I had to have surgery to prevent breathing and future infections. So next Friday I will have this surgery. Hopeful that this will solve some problems Also on antibiotics for over two weeks and have been on Prednisone and recently had two Rituxin infusions. Today I feel great. Sharing this so you guys might consider CTscan of sinuses. I was shocked how much blockage could be so clearly seen throughout my head. I had two similar surgeries in early 1980’s. But new technologies/mini cameras are now helpful to make this surgery easier. Much of this sinus problem has been cause by WG. FYI: I have learned it is important to see an ENT who is a Rhinologist who is knowledgeable about WG, rather than a regular ENT. CT scan is imperative. I have had WG for 37 years! I am now 71.

This is all familiar!You're right, CT scan of the sinuses is very important. Both my son & myself have had severe sinus disease (CT scans, MRI's, etc.) and persistent rhinitis. Must say we've avoided surgery of any kind like the plague due to strong bias against the efficacy in our disease. Although we've had severe chest pain, lung symptoms & cough so far they haven't picked up significant changes (except for nodules, ground glass infiltrates, and mild fibrosis!) as we've already been treated with 20 years of immune suppressants. You've had WG for a very long time! Let us know how you fare with your upcoming surgery.

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[drz]

[QUOTE=mikecaven;I have learned it is important to see an ENT who is a Rhinologist who is knowledgeable about WG, rather than a regular ENT.[/QUOTE]

I agree this desirable if You can find one. i recently had to see my local ENT about the frequent nosebleeds I had with my last flare. He considered himself an expert on Wegener's because he saw a patient with it once thirty five years ago and he was certain I didn't have any nosebleeds problem from GPA. He advised me not to use the Flonase since he said that it would make it worse. In the past my GPA treating doctors have recommended it so I went with their advice and ignored his advice to put Vaseline in my nose. The steroid spray seemed to help and the nosebleeds decreased till I went on the triple pred dosage booster. The local ENT doctor did some good for me in that he looked up my nose and didn't see holes or erosion in my septum or signs of developing saddle nose. But we have to recognize the limitations of our treating doctors even when they don't. It is our foremost responsibility to take good care of our body.

[Masha]

Mike, you said it! I consider myself blessed to have a top notch ENT. He is a surgeon who has performed many saddle back surgeries. I do not want one, but I would have the surgery you are having. All surgery is invasive, but I think from the sounds of it, you will get sinus relief. Mini cameras...remember those sinus surgeries when our noses were packed for a week. If it wasn’t for my current ENT I wouldn’t even know I have Wegeners. He recognized I had an autoimmune disease, ran tests for 28 different autoimmune diseases and called me at home the night the results came in. He was honest enough to say he thought I had Lupus and then this turned up. He got me into a Rheumatologist immediately.
Sending prayers to you. Keep us posted.
Masha