Hello from Washington State...my hubby was recently diagnosed with Wegener's

[HawaiianPrincess]

Hello from Washington State! My hubby, Steve was recently diagnosed with Wegener's in September 2013. This is all new and scary! We are facing this journey together, I found this support group, and decided to join in hope of getting more answers, and feeling more hope to see the light at the end of the tunnel.


As I've read many people's stories, I can relate so much of what my husband, Steve is going through. This all started at the end of July 2013 with sinus trouble. Steve has NEVER had a sinus infection, let alone has ever been sick in his life. All of his symptoms related to a sinus infection, so he ended up at an Urgent Care for the usual antibiotic's etc. He took the antibiotics & Flonase nasal spray, and went on his way thinking this was the end of it. Sadly, this was only the beginning of a long nightmare. Ten days past, and he was still feeling sinus pressure, congestion, & constant drainage. Off he went back to Urgent Care, again for another round of antibiotics & this time a prednisone tapered dosing pack. For good measure, they decided to culture his nose.
After another week or so he was feeling even worse. Fever & chills set in along with frequent bloody noses. By this time he went in to our primary care physician. Looking at the results for his nasal culture, it turned up nothing. All I could come up with is that it's probably MRSA, since the antibiotics weren't responding. Well, our Dr decided to culture his nose again & gave him more antibiotics, Bactrim along with a referral to an ENT & wanted a CT of his sinuses. He started using a Nettie pot, but that didn't help. They thought initially that he was abusing Afrin nasal spray. He only used the Afrin nasal spray for 2weeks. Steve started taking the Bactrim & after 2 doses he broke out in a big red rash all over his body. A few days later, we went to the ENT & he looked up Steve's nose with a scope & concluded that we needed to go have blood cultures done with an ANCA along with sed rate, creatine & differential & urine analysis. He also prescribed Steve 40 mg of prednisone & more antibiotic's. Feeling scared & unsure, he went to the hospital & had all the testing done. The ENT Dr was amazing & supportive. Once, the blood cultures came back, we were immediately called in for an appointment. This was moving so fast. Our ENT wanted to do a biopsy of Steve's nose. We hadn't received the results from the ANCA test at this point. He told us he suspected an autoimmune disease called Wegener's Granulomatosis. I work in the medical field & in a hospital setting. This was the first time I had EVER heard of this disease! After the nasal biopsy was done, the waiting & worrying commenced. We had to wait 4 days for the results to come back from the pathologist. In the meantime, I started to do some research on the internet. Such a scary place to be! Reading the words kidney failure, dialysis, tracheal stenosis, saddle nose deformity, & lung involvement with alveolar hemorrhaging.

Finally, we heard back from our ENT that the biopsy was "inconclusive." So, more waiting for the ANCA results to come back. Finally, we were told the ANCA was positive. Very positive. By this time, Steve started experiencing ear pain. Mostly, just a feeling that the left side of his head by his ear was hot. He had fevers & aches all over his body. His joints, jaw, & calves just ached. He had some trouble swallowing, tightness in his throat & his voice became hoarse. Our ENT increased Steve's prednisone to 60 mg daily & he scoped him. he also wanted him to have a chest X-ray.It was just as we feared, subglottic swelling. We were referred to a Rheumatoid specialist, after calling them right away they informed us that they couldn't see Steve for 3 weeks! That was unacceptable with all his symptoms. Thank goodness, after having our ENT Dr call the Rheumatoid Dr & push them to schedule us ASAP & me calling repeatedly to get him in, he finally had a appointment after 3 days.

I organized a binder with all of Steve's test results, CT, chest x-ray, blood cultures. I also documented all of his symptoms, when they started & all his current meds he's been on. I made a list of all the questions we had for the Dr & their answers right next to it. I took notes at ever Dr's visit so I didn't miss a thing.

Our visit to the Rheumatoid specialist was good at first. She seemed knowledgable in treating this disease. I asked her if she's ever treated this disease, she gave me a vague answer & said she saw it in her residency. I reluctantly decided this was the best care we had at this point. She initially put him on 15 mg methotrexate & folic acid, then continue with 60mg prednisone daily. She wanted him to have liver enzymes as well, but NEVER indicated to have that done 1st BEFORE taking the methotrexate . His liver enzymes were bad. His alt was 274, & ast 47. I asked her about his vitamin D levels & she had forgotten to have his levels checked. I had my doubts about her treating Steve. He had already taken the methotrexate before having his liver enzymes checked. So she had us stop that & start on 50mg Imuran, then increase each week to 150 mg daily. After a week & a half of taking Imuran, Steve started having black tar diarrhea & horrible stomach cramping. We called her office for a week with no return calls. After a week, we finally heard back from them & told them of our frustration. Her medical assistant is Russian & had a very thick accent. She is hard to understand, I find myself repeating what she said. She is the gate keeper to our specialist. I can't tell you how frustrating that is! So, he discontinued taking Imuran & is currently only on 60mg of prednisone & 50,000 Vitamin D twice a week.
She wants Steve to repeat his blood work & check his liver enzymes, creatinine levels, & blood sugar tests next week to see if he can resume taking Methotrexate. He also just started experiencing neuropathy on his left foot that feels like its asleep & tingling. It's now traveled up his leg to his arm & shoulder. She said that this doesn't happen with Wegener's, so she wants him to see a Neurologist. We'll see what happens.


In the meantime, we are seeking a second opinion & have set an appointment at The Cleveland Vasculitis Clinic. We recently enrolled in the National Consult program & should be hearing from them in the next few days. After reading others posts on where they go for treatment, our decision wasn't hard to make. We have heard only good things about The Cleveland Clinic. I don't feel like Steve's care is going going anywhere. The Dr's here haven't treated this disease & I feel like they're making guesses on what to do for him. So we are looking forward to being aggressive with his treatment in hopes that he will start feeling better.

:thumbdn::love:We'll keep you posted on our journey...I look forward to meeting you all & hearing about your experiences. Good luck to each one of you facing this & God Bless!

[DJS]

Wow, what a ride. Welcome to the group and I hope you get the help quick enough. My wife had sinus and lung involvement and she had a great lung Dr who took charge of her initial treatment, then he got her to a good reumie to monitor her recovery. After one year she is off all drugs and feeling pretty good.

[HawaiianPrincess]

Thank you, I'm happy to be a part of this group & learn more. Your wife is very lucky! Glad all is well.

[Dirty Don]

Welcome princess...many of the questions you have can be dealt with here. This a great blog full of good peeps! Well, sounds like your hubby is going in the right directions, especially going to CC now,...just gotta be patient. As for neuropathy, many Weggies have some form of it. It IS a result of WG's damage to the system...and, perhaps, an AI response. I'd question where and what info your doc is getting. He can consult with WG specialists thru the Vasculitis Org...to learn more himself. Ask lots of questions here, always someone on...best to you both.

[annekat]

Greetings and welcome from a fellow Washingtonian. Looked up Liberty Lake and see we are on opposites sides of the state. Washington is pretty short on known rheumatologists who are equipped to deal with Wegener's. I have gotten a few names lately from a Facebook group. But you have made a good decision and are lucky to be able to go to the Cleveland Clinic. What your husband has gone through sounds scary and frustrating, but at least he was diagnosed quickly compared to some of us who were treated for years for sinus infections, allergies, asthma, etc., before things got worse and we found out we had WG. I was one of those and also had never had a sinus or ear infection in my 58 years, and here I was suddenly having them.... that in itself should have been a clue, and maybe I wouldn't have ended up with a saddle nose if they'd thought to pursue the WG possibility earlier. It is really great that you have found this forum, it is truly the best place to be for support and information about WG in all its variations, it's treatments, and the different scenarios people go through. There are dozens of very caring and knowledgeable people on here who will respond to anything you want to ask or share. Please keep us posted, and I wish the best for your husband for a quick and steady recovery and eventual remission. I hope you can get with the CC soon, for an appointment and maybe for some preliminary consultation with your doc, so he can get on a correct treatment plan as soon as possible.

[HawaiianPrincess]

Thank you, Don. Before I registered for this forum, I would look through all the posts looking for answers. My hubby, Steve is reading these posts & feeling more hopeful with managing this disease. I appreciate your info on the neuropathy. This EXACTLY why we joined this forum to find people like YOU. :biggrin1: Thanks again!

[HawaiianPrincess]

Hello Anne,
I see you live in Olympia....Liberty Lake is right along the Idaho border. We are only 10 mins away from Coeur D'Alene, ID & 5 mins away from Spokane. I'm happy to meet you! I tried to look into the University of Washington, Rheumatology Clinic. They couldn't get us in for 3 months! I spoke with a friend who was treated there for Wegener's & she didn't have much success. Many of Rheumatoid specialists there did not have experience treating this disease. You're right, this area is completely void of anyone skilled enough to effectively treat this disease. She ended up going to the Mayo Clinic. Yes, we feel very fortunate to have been diagnosed so quickly. Our ENT was amazing, I wish he could treat this, but he told us this was over his head. That is just AWFUL what you went through. I hope you're recovering & getting better.
I'm just amazed at how many people share similar stories & can relate to ours. We appreciate your well wishes. Thanks! Here's hoping they get us in soon.

[Dirty Don]

FYI: I was about 3 mos out for an appt at Mayo...we called appt number EVERY day...got a cancellation in 3 weeks!

[drz]

FYI: I was about 3 mos out for an appt at Mayo...we called appt number EVERY day...got a cancellation in 3 weeks!

Once you are in the system as a patient they assure me I would be seen right away in case of a serious flare. The hard part is getting that first appointment.

[annekat]

Princess, what I went through is not as bad as what many have endured... I was only in the hospital overnight, where no one noticed my saddle nose and I didn't see it myself until I got home! I wear glasses, which helps cover it up. It is an unfortunate thing, but I've seen pics of much worse cases, and it is not life-threatening nor does it impair my breathing function through my nose. Others on here have been in much more dire circumstances with their Wegs, and it sort of sounds like Steve is going through a worse time than I did, even though he got a quicker diagnosis. I've been lucky that my case was not too severe and responded well to meds, and I'm doing quite well in spite of having a doc who is a pulmonologist, not a rheumatologist, and very inexperienced with Wegs. He is doing the best he can, and the forum is helping me verify that I'm getting the right course of meds for my situation. It's been 2.5 years now since my dx, and I am almost back to normal. I'm on reduced doses of meds, and I did have a little flare this last winter, but it wasn't much and was knocked down by an adjustment in meds. I've stuck with this doc because it is easy and I'm not much for traveling to Seattle, but yes, the UW is where I was thinking of for someone more experienced, and there are some there and at Virginia Mason who are recommended by people on the NW Washington Vasculitis group on Facebook. There is even an Olympia doctor who was recommended by someone on there, though she has a different kind of vasculitis, not Wegener's. So all in all I've been lucky, since I don't have the resources to travel anywhere like Cleveland. There is also a vasculitis center at U of Utah in Salt Lake City, with Dr. Koening, who is considered good, and some of our members go there. Then there is Dr. Sharon Chung at UC San Francisco who also gets great reviews. That is about it for Wegs docs accessible to here.... helps to have friends or relatives in those areas, which I do. So I should be doing more about establishing a connection somewhere before I get really sick. 3 months wouldn't be so long to wait right now, but it certainly could be under worse circumstances.

Anyway, I look forward to hearing how things go for Steve. It sounds like things have happened really fast, and I hope that his recovery is just as fast and doesn't drag on, so he can get into at least a remission maintained by drugs. I do not have subglottic issues like he does and consider myself lucky there... I hope that doesn't turn out to be too bad. It sounds like he needs to get on some serious meds soon to keep things from getting too much worse before he can be seen at Cleveland. Keep us posted!

[mishb]

Hi Princess and Welcome to you and Steve.

This conditions sucks for sure and I am glad you have decided to join and speak to the people who know WG better than any of the doctors......they/we are the ones who live it each hour, each day.

I am glad Steve can be seen at CC

[Pete]

In the meantime, we are seeking a second opinion & have set an appointment at The Cleveland Vasculitis Clinic. We recently enrolled in the National Consult program & should be hearing from them in the next few days. After reading others posts on where they go for treatment, our decision wasn't hard to make. We have heard only good things about The Cleveland Clinic. I don't feel like Steve's care is going going anywhere. The Dr's here haven't treated this disease & I feel like they're making guesses on what to do for him. So we are looking forward to being aggressive with his treatment in hopes that he will start feeling better.

:thumbdn::love:We'll keep you posted on our journey...I look forward to meeting you all & hearing about your experiences. Good luck to each one of you facing this & God Bless!

Hello Princess!

Glad to hear you got into CC. I've been going up there for 18 months. The docs there are very experienced treating wegs, and I'm sure they'll get Steve's disease under control. Several of us see Dr Alexandra Villa Forte, and I think she's great. Takes time during office visits to fully answer my questions. She gets back to me promptly when I call with questions. Others here see Drs Carol Langford and Gary Hoffman, and their experiences with them are positive as well.

let us know how things go.

[annekat]

Pete, I, too, am happy they are going to CC but am worried about Steve not getting proper treatment until he's able to get an appointment there. I think he needs it right away! I think I remembered you saying you got an initial appt. with Dr. Villa Forte fairly quickly. If I were able to go there, I'd certainly consider her at the top of my list, given all the favorable comments from you and others. But I imagine any doc there would be good, and the soonest appt. possible might be the one to go for, unless they can get some treatment going prior to that, by way of consultation or whatever.

[Alysia]

Hi Princess,
welcome to the forum. it is the best wg-doc on the globe. the best wg-experts are here.
your husband had being through too much. I also had similar reaction to Imuran. then switch to mtx, which hardly helped me and then to rtx.
I hope he will soon have good doc and start his way to recovery.
he is blessed to have you, so devoted and caring for him.

[HawaiianPrincess]

Thanks for your comments and info on the Doctors that know how to treat this disease. I have read quite a bit on Dr Gary Hoffman. We would love to have him be our Dr. I'm not sure how the National Consult Program works, I'm still waiting to hear back from The Cleveland Clinic. Yesterday, we went to our Rheumatoid Specialist & pushed her to order more liver enzyme blood work, cbc, differential, urinalysis, & sed rate just to see where he's at. I was hoping his liver enzymes will be better, so he can go back on methotrexate. Right now, he has resumed taking the Imuran, but takes 1 pill in the morning, and 1 in the evening for a total of 100 mg this week. It looks like his stomach irritation was from the ibuprofen he's been taking for his fevers.

We also let her know of Steve's frequent urination & how thirsty he is. He has been cramping so much in his legs, especially in his calves. More so than he's ever been before. I know this is all signs of diabetes, since he's taking 60 mg Prednisone daily. She said it was the steroids causing this???! I really don't think that's the case here. I'm taking him to Urgent Care now to check his blood sugars and have his potassium checked. His urine is clear & he urinates every 15 to 20 mins. This can't be normal. He's been drinking Gatorade & eating bananas. Apparently, he believes it will just go away. We are on day 4 of this!

His neuropathy in his left foot, up his leg, and arms to shoulders is still there. Our Specialist here doesn't believe it's the Wegener's, so she want us to consult with a neurologist. Just what we needed right now, another Specialist! It seems like he's going downhill more while the Wegener's is destroying his body. We don't know where it will damage next. His left side is feeling the brunt of everything more than the right side. His left ear is hot and he's sensitive to sound right now. I'm just so worried. I'll keep you all posted. I just want him to feel better.

[HawaiianPrincess]

Yes, I agree Anne. We need to get in ASAP with the Cleveland Clinic! Things are progressing in the wrong way with him, he's having other issues right now. I'll keep you posted.

[annekat]

Yes, I agree Anne. We need to get in ASAP with the Cleveland Clinic! Things are progressing in the wrong way with him, he's having other issues right now. I'll keep you posted. I know nothing about how the National Consult Program works, either, and didn't even know it was called that. But if you are in touch with CC in regard to that, then I hope you will get some guidance as to what should be done for Steve until he can be seen at CC. Good luck!

[drz]

When I was first diagnosed and in very bad shape my treating doctors got consults right away by calling their colleagues who were recognized experts. I believe that is why I survived my initial treatment and am still here. Have your doctors called anyone for consultation?

[Debbie C]

Hi Princess and Steve. Sorry you are both going through this,Wegeners is a terrible disease but it can be managed.You might want to see a kidney dr. until you are able to make the trip. Some of them are very experienced with this disease and like drz. said they can consult the Clinic. I go there as well and see Dr. Hoffman. He is very knowledgeable and I think if you call the clinic directly they can usally get you in the next day if it is urgent.Let me know when you get an appt.there is a Comfort Inn there that is very clean and serves good buffet breakfasts and also provides a shuttle bus back and forth to the clinic.Take care and keep us posted. I'll say a prayer for you both:hug2:

[HawaiianPrincess]

No, our specialist hasn't consulted with anyone from the Cleveland Clinic. I will call the clinic directly to get in to an appointment. Right now, I'm in the ER with Steve. I had to rush him here, his blood sugar was over 600. We are in a room now & he's on his second bag of fluids. Then, they'll be starting an insulin drip. We're both upset because he was just diagnosed with type 2 diabetes. It's going to be a long night. Thanks for your kind words & great advice. We sure need it right now!

[annekat]

So sorry to hear this! My thoughts and prayers are with you both. I hope they are able to stabilize him and things will settle down soon!

[Dirty Don]

Hang tough the both of you...WG along with whatever else is a long road...best to you.

[vdub]

Hi, HI..... I live down the street a bit in Clarkston. Two of my docs are in Spokane. Unless you are already set for a visit to Cleveland, you might want to consider the vasc center at U of U in SLC -- Dr Koening. Send a PM if you want to talk and I'll give you my phone. You can see my story below.

[Alysia]

No, our specialist hasn't consulted with anyone from the Cleveland Clinic. I will call the clinic directly to get in to an appointment. Right now, I'm in the ER with Steve. I had to rush him here, his blood sugar was over 600. We are in a room now & he's on his second bag of fluids. Then, they'll be starting an insulin drip. We're both upset because he was just diagnosed with type 2 diabetes. It's going to be a long night. Thanks for your kind words & great advice. We sure need it right now!

I am sending you my praying :hug1:
I hope he will soon feel better. please update us.

[vdub]

I was reading and responding to your message from my tablet, so I missed the part about being the hospital. I was in the hospital a couple months ago for high blood pressure -- I went in at 616.

I am in NM at the moment and won't be home until 15Jan when I have doc appts in Spokane. My Rheumetology is at Northwest Arthritis. My doc is Mueller.

I mentioned Dr. Koening as a great resource to see a specialist. He came from the Cleveland Clinic to SLC to start the U of U Vasculitis Center.

[HawaiianPrincess]

Hello friends,
Thank you for your well wishes & concerns. So sorry for not updating sooner, it's been a whirlwind of events. Steve was discharged from the hospital this weekend with another diagnosis, type 2 diabetes. he has to check his blood sugars 4 times a day & have insulin shots in his belly along with other longer acting oral diabetes meds. We are both just exhausted with lack of sleep & constant worry over chasing his blood sugars from the prednisone.

So far, we're managing well. He has a family history of diabetes, which made him have a higher chance of having it. With all the prednisone, he was constantly craving sweets, & lots of carbs! He functions so well with the steroids, so it's not an option to decrease them at this point. His A1 C1 test was high & showed that he's had high blood sugars for months even before he was diagnosed with Wegener's. His average blood sugars back then were running in the 250 range!

After rushing him to the ER & all the blood cultures were taken, his official blood sugar was 681! Thank goodness he wasn't in DKA (diabetic ketoacidosis) or coma. I work at this hospital & I'm familiar with all the Docs in the ER. They spent much more time with us & went over all his labs. They even added on extra's for me, so we could see if he's responding to the Imuran & most importantly check his liver function. We were surprised to hear his WBC is normal, liver enzymes are great, vitamin D is better, sed rate is back to normal range. All in all he looks like a guy that's healthy??!

Although, Steve is still experiencing achy joints especially in his arms and legs. I just wonder why he's experiencing so much joint pain, it seems like it's RA & he's still having low grade fevers off & on, which is bothersome to him. The neuropathy on his left side has now moved over to the right side. We are currently waiting to see a neurologist to do some nerve conduction studies. Is this a Wegener's symptom? Our rheumatologist thinks it's not & she referred us to a neurologist.

Right now, he's been responding well to the insulin & his blood sugars stay in the 200 ranges, sometimes peaking to 300's after taking his prednisone. I guess it's better than the 600 range. We're making the most of it & I've been compiling recipes for him. He's hoping he won't need the insulin shots when his prednisone is tapered.

In the meantime, we're anxiously awaiting his appointment with the Neurologist to figure out his neuropathy. We are also trying to determine if we're going to The Cleveland Clinic. We were frustrated with our Rheumatologist not returning calls, etc. But it seems that we have all the Dr's that is needed to figure this out right here in our area. Financially, it would be a stretch. We did sign up to be in their National Consult Program, & they will work with our Rheumatoid specialist if she has questions. We'll see how this all works.

Thanks for all your support...I'm happy I found this forum. I wish you all well in your journey.

[annekat]

Thanks for the update. The diabetes dx is troubling... I'm glad it was caught before anything like a coma happened, and you now can concentrate on managing it. The joint pain is common with WG, though some on here do have RA as well. Your doc is wrong to say neuropathy is not a symptom of WG; a lot of us have it. Unless they meant the particular pattern of it moving from one side to the other.... I understand it is also a symptom of diabetes. It can get complicated when we have other conditions besides WG. I'm glad so many of his tests are positive, despite the alarming news.

It does sound like you need more expert advice. I would trust vdub's recommendation of Dr. Koening at U of Utah, and I know of at least one other forum member from Washington who has gone there and recommends it just as highly. Perhaps that would be more affordable for you than going to CC, and as vdub says, Dr. Koening was at CC before he established the Utah clinic.

[HawaiianPrincess]

Thanks, it's definitely something to look into. We are unsure about our Rheumatoid specialist here as far as trusting her for Steve's care. We were just in her office the day before I took Steve to the ER. I told her of his symptoms, excessive thirst, frequent urination, dizzy & disconnected. She simply dismissed it & said it was the prednisone. I told her we should have his blood sugars checked for hyperglycemia. She didn't feel that was necessary.

I will message vdub to get more info on contacting Dr. Koening. Thank you for the info on the neuropathy & joint pain. It eases my mind for the time being that it is common with WG or diabetes.

[annekat]

The other person from WA who has seen Dr. Koening and likes him is ArlaMo; I haven't seen her on here for awhile but doubt she would mind a private message. You also might consider vdub's docs in Spokane for local visits. And drz, who is on here a lot, has diabetes as well as WG and knows a lot about neuropathy. A lot can be blamed on pred or the other meds, but not everything. I'm not trying to micromanage here, just have been on here long enough to have an overview of different members who could be helpful in decision making, and I'm sure drz will be on here with some comments pretty soon.

[Alysia]

Hi Princess,
thanks God you are back home and relatively ok. I hope that from now on things will only get better. we are with you and your husband :hug1:

[HawaiianPrincess]

The other person from WA who has seen Dr. Koening and likes him is ArlaMo; I haven't seen her on here for awhile but doubt she would mind a private message. You also might consider vdub's docs in Spokane for local visits. And drz, who is on here a lot, has diabetes as well as WG and knows a lot about neuropathy. A lot can be blamed on pred or the other meds, but not everything. I'm not trying to micromanage here, just have been on here long enough to have an overview of different members who could be helpful in decision making, and I'm sure drz will be on here with some comments pretty soon.

Thanks so much, Anne. I'm still learning on how to navigate this forum. I'll figure it out soon, and message vdub to find out what Dr's are treating him. I think he mentioned it in an earlier post. This is a great start & I appreciate it! We've only had 2 visits with our Rheumatoid specialist, so switching to another won't be too bad.

[drz]

The other person from WA who has seen Dr. Koening and likes him is ArlaMo; I haven't seen her on here for awhile but doubt she would mind a private message. You also might consider vdub's docs in Spokane for local visits. And drz, who is on here a lot, has diabetes as well as WG and knows a lot about neuropathy. A lot can be blamed on pred or the other meds, but not everything. I'm not trying to micromanage here, just have been on here long enough to have an overview of different members who could be helpful in decision making, and I'm sure drz will be on here with some comments pretty soon.

I got the hint, Anne:laugh:. My diabetes was misdiagnosed for many years so I had neuropathy a few months after my diagnosis of diabetes. This was many years before my Wegs stuff. My endo at the time said this meant I had had diabetes for some time cause neuropathy doesn't come on that fast. However, my Wegs made it much worse. I was diagnosed with Wegs over three years ago, but finally my last A1C has returned to my levels pre-Wegs. It is very hard to control BG levels when on pred unless you are on an insulin drip continuously and monitored hourly. You might ask about borrowing a CGM to help assess the BG levels. A good endo is also essential to help control things as diabetes can really exacerbate all the Wegs stuff and the other way around too.

[annekat]

Yeah, drz, I'm a bit of a busybody. I think it's a family trait.

Hawaiian Princess, I like your new avatar. Must be your hubby, Steve... he is nice looking! My first thought was that the scene might be in Hawaii, but I guess it is Washington.

[pberggren1]

I love busybodies......it keeps us on our toes and it lets me know things on the Forum here are in good hands.....:thumbup:

[annekat]

I love busybodies......it keeps us on our toes and it lets me know things on the Forum here are in good hands.....:thumbup: Thanks, Phil, makes me feel better. But sometimes I spend too much time trying to arrange other people's lives when I should be focusing more on my own.

[pberggren1]

I understand Anne. You can learn a lot about yourself from others as well.

[HawaiianPrincess]

I got the hint, Anne:laugh:. My diabetes was misdiagnosed for many years so I had neuropathy a few months after my diagnosis of diabetes. This was many years before my Wegs stuff. My endo at the time said this meant I had had diabetes for some time cause neuropathy doesn't come on that fast. However, my Wegs made it much worse. I was diagnosed with Wegs over three years ago, but finally my last A1C has returned to my levels pre-Wegs. It is very hard to control BG levels when on pred unless you are on an insulin drip continuously and monitored hourly. You might ask about borrowing a CGM to help assess the BG levels. A good endo is also essential to help control things as diabetes can really exacerbate all the Wegs stuff and the other way around too.


Thanks for your response, drz. Steve has a referral to an endocrine specialist & we have a month & half wait. :thumbdn:
Steve's neuropathy is horrible in both feet! He is going to see a neurologist or that. the neuropathy came on right after he was diagnosed with Weg's. Steve gives himself insulin injections before every meal, we have a blood glucose monitor since his diagnosis with type 2 diabetes. What's frustrates him the most is the stiffness in both his legs, especially in the morning.

[HawaiianPrincess]

I appreciate all your advice, Anne. :biggrin1: Yep...that's the hubs, Steve. The background is Leavenworth, WA last Fall. such a beautiful place to visit.

[annekat]

I appreciate all your advice, Anne. :biggrin1: Yep...that's the hubs, Steve. The background is Leavenworth, WA last Fall. such a beautiful place to visit. Aha. I've never been to Leavenworth or anywhere east of the Cascades. I'm sure it is beautiful there.

[Allisonquast]

Hi I'm in the same situation as you. Husband has wegeners as well diagnosed June this year.

[HawaiianPrincess]

Hello Allisonquast~
I'm sorry to hear that. It's been quite a roller coaster ride for us. We were lucky to get a quick diagnosis, but unfortunately there aren't a lot of Specialist's that deal with Wegener's in this area. We were scheduled for an appointment and consultation with the Cleveland Clinic a week ago. Unfortunately, we weren't able to keep that appointment. Traveling would be quite expensive, along with the stress of leaving our 3 kids.
We have put our trust in our Rheumatoid Specialist, and she consults with the Cleveland Clinic is there are questions. I realize that it takes time to build a relationship with the Doctor. This is all new to us, especially when you go from completely HEALTHY, never seeing Doctors on a regular basis, to seeing 4 Specialists every week. So along with Wegener's, my hubby is newly diagnosed with type 2 diabetes & high blood pressure. He has been experiencing severe neuropathy in his feet, mainly on his left side. He can barely walk without extreme pain. He is seeing a Neurologist now, and is on medication that has helped him tremendously!
If you have any questions, you will definitely receive answers here or someone will point you in the right direction. I have found comfort and support from this forum. Good luck on your journey.

All my best,
LeAnn

[annekat]

Good to hear from you, LeAnn. It sounds like you are dealing with things the best you can, and having your doc consult with CC is great. I'm sorry about the diabetes and the extreme neuropathy. I'm glad the meds for that are helping!:smile1:

[Allisonquast]

Wow Leann. Like anyone needs anymore than wegeners to deal with. It's enough ! I am the one always googling symptoms for my husband. Colin has only seen his rheumy twice. He gets blood taken every two weeks so we assume that everything is fine. Marta said it when she wrote to Colin - we don't know what's med related, weighs related or something new.
I hope your husband is pain free real soon. That dies not sound like fun especially since he was like my husband. Never sick and not on any meds until his diagnosis.

[HawaiianPrincess]

Yes, thank you. Hoping his pain issues are much better. We'll see, so far he's responding to the neuropathy meds, Gralise. There are ups and downs with this disease, everyday is different. His last set of labs were just awful! Obviously, the Wegener's is quite active. He was experiencing night sweats, severe body aches, and fevers. The Specialists are amazed that he is walking upright & still working 10-12 hours five days a week! I'm just scared at what's round the corner. Trying to take it day by day.

[annekat]

I, too, am amazed that he is working all those hours! Perhaps a little break would do him some good. Maybe next week with Thanksgiving, he'll get a chance for one! My best to him.

[russ]

Hi Princess, my husband has wegeners we live in wa his rheumatoligist is mary wemple, she treats wegeners also dr frank fung is a kidney specialist,he is great! also dr park at valley med is a pulmanary specialist he treats wegeners too! I hope this helps the sooner you see someone the better.