Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
Hi, My husband was just diagnosed with Wegener's and wondered if anyone can give me a perspective on this from a personal point of view. I have read up on it through different MD Websites but am interested in hearing more from a personal experience. I would really appreciate any info, this is a new one to me.....................Debbie
The following user gives a hug of support to debbie363636: iluvmysister (05-01-2011)
Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
Well, I guess I'm no help but I have had a recent ct scan that found multiple hyperdense calcifications of my left kidney and "calcifications within the spleen suggestive of prior granulomatous infection". My reserch into this leads to granulomatous disease which leads to autoimmune disease. I have been researching into Lupus lately, because I have been having problems for so many years, and the docs have been no help. I am pushing the issue now and getting all records togeter so hopefully someone can put it together. I go in for a cytoscopy next week and to go over my CT results with my urologist. I will bring all this up and if I learn anything I will post it. If you could do the same it would be much appreciated. Mary
Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
Well, I guess I'm no help but I have had a recent ct scan that found multiple hyperdense calcifications of my left kidney and "calcifications within the spleen suggestive of prior granulomatous infection". My reserch into this leads to granulomatous disease which leads to autoimmune disease. I have been researching into Lupus lately, because I have been having problems for so many years, and the docs have been no help. I am pushing the issue now and getting all records togeter so hopefully someone can put it together. I go in for a cytoscopy next week and to go over my CT results with my urologist. I will bring all this up and if I learn anything I will post it. If you could do the same it would be much appreciated. Mary
Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
Mary, Thanks for the reply. As you can see by the absence of posts this disease is very rare. 1500 people in the country of 300 million have it. We are heading up to the Cleveland Clinic today to see doctors up there who specialize in Wegener's. Luckily we live in central Ohio and Cleveland Clinic is one of 4 institutions in the country doing research on this disease. My husband was diaganosed by an opti-neurologist when he started haveing severe eye pain and double vision. He has colitis and thyroid which are also auto-immune disease. My 22 year old daughter was diagnosed with lupus, sjogrens, reynaulds and rheumo arthritis when she was 16. Luckily she exibits very few symptoms of any of them. As you can see it runs rampant through my husbands side of the family. Hopefuly we will get some answers up there and they can get him started on a treatment program. They treat it very aggressively with powerful cancer drugs. We were told to plan on spending up to 3 days there so I will post when we get back. I pray that you get the answers your looking for................Debbie
Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
wow, I also have Reynauds and colitis. So these are all symptoms too. I definately need to bring all this up with my urologist. On the lupus sight, I was going over signs that you could have lupus, not Dr. stuff, but other stuff you might not tie into it. There was severe leg cramps as a kid, which I use to have terrible. WE were poor so I didn't go to the DR, but my mom thought I had rheumatic fever. Allergies to insect stings, which I also have. Of course theres the reynauds syndrome. If this is so rare, how was your husband first diagnosed? I seem to have been being puished around for years now, and I'm not sure how to be heard by the Dr.s. Good luck to you and thanks for the advice. Mary
Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
Debbie,
In August of last year, my husband was diagnosed with Wegener's. It's been a roller-coaster ride and he is still battling pain and fatigue. As you are learning, Wegener's is a difficult and rare disease. Because so few have it, there are not many support groups/sites.
When my husband was first diagnosed, he was put on prednisone and methotrexate. It looked like he was going into remission, but his improvement stopped after about two months. Since then, he has progressively gotten worse. He is not as bad as he was when he was first diagnosed, but he has daily pain and severe fatigue. The pain used to be in his joints and muscles. Now it is mostly in his muscles. He is scheduled for an EMG in April. He also has tested positive for the ANA and anti jo-1 antibodies. Not sure if he has more than one disease going on or if it's an overlap of diseases.
Anyway, I would love to hear how your visit goes in Cleveland. You are so fortunate to have the ability to be treated at one of the best (if not the best) vasculitis clinics in our country. We live on the west coast and have limited options for such care - but we do love our rheumatologist and feel confident with him.
Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
Tammy, I am so sorry to read about your husband. This is such a terrible disease and the treatment is just as bad. My heart goes out to both of you.
Our visit to Cleveland was very informative. My husband had an MRI of the head, Cat scan of the lungs and urinalisis done. None of these tests showed active disease except the MRI detected something going on in his sinus cavity. His blood tests showed inflamation in his body, but that may be from his colitis. The doctor re-ordered the blood work that showed him positive for auto-immune disease that led to the diagnosis of Wegener's. At this point she felt she could not diagnose him 100% with the disease and in good consience could not start him on drug therapy since they are so toxic. She gave him standing orders for blood work every month that she will closely moniter and wants him to see his sinus surgeon and eye specialist again. The symptom that started all of this was severe eye pain and double vision. She wants him to report to her immediately if he has a re-occurance of his eye problems or any joint pain. She would like to get a biopsy of his eye at that time. She is very knowelgable of the disease. She has had many articles published on Wegener's and speaks at confrences on it all the time. She is one of the top doctors in the county who specializes in this disease and has referrals from all over the world.
You said your husband has muscle pain. My husband has been having muscle pain in his legs but she really didn't seem to interested in it. Has your husband had any biopsies?
You probably already know this but she said that there is alot of good info online at the Vasculitis Foundation website.
I found this website because I had back fusion surgery 9 weeks ago and logged on to the back problem site. When you ask a question there you are immediately answered by tons of people. I got great suppport, advise, sympothy and a chuckel or two there. They really helped me with my recovery process. It is a 6 month to 1 year recovery but that has been totaly placed on the back burner in leiu of my husbands problems. I told them that I wouldn't be posting for a while and came to the auto-immune site. Not many answers for me here. You are the first one to post about this disease since 2004. It's a great place to vent and speak your mind about all you are feeling. It helps to talk to people who understand but are not immediately in your family.
If you don't mind me asking, how old is your husband. Mine is 52. Is he still able to work? Has your doctor treated many people with this disease? What are her feelings about his long term prognosis?
I know I am rambling on but I know by personal experience from the other board that I hungered for info so I am trying to cover alot.
Let me know how you and your hubby are doing. It's terrible to make friends this way. God bless you both...............Debbie
Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
I have been told I have lupus and diffuse sclero but my rheumi is still on the fence. My las visit with him 2 weeks ago he said he just can't seem to put his finger on it since my symptoms are so wide spread. I have pretty bad kidney problems and extreme lymph node swelling throughout my body. My joints are really getting bad and I have a huge what he called a baker's cyst on the back of my left knee. They even did a pet scan to rule out cancer. I hope they are reliable because I am still getting new or bigger lymphnodes...What brought this up is the treatmen I am undergoing is the same as what they use for wegeners (which my rheumi did say was a possibility for me as well. This whole thing started with me having optic neuritis in both eyes but much worse in my left followed by neuropathy in my arms and legs.
If you do have to take the cytoxan make sure you get meds for the nausea...strong ones. The nausea is by far the worst. I have taken methotrexate at the max dose, cellcept at the max dose and up to 80 mg of prednisone on a daily basis at times...my lowest dose which I am on now is 30mg a day. I have to get the IV treatments of Cytoxan once a month with 150 mg of methelprednisone in my IV as well. All I can say is, I swell up like a blowfilsh and am throwing up for days. BUT I have only had thinning of my hair. It hasnt all fallen out.
Tell him to ask the dr if Cellcept is a option. The side effects are pretty mild. Much more so than MTX or Cytoxan. I have only had 3 treatments, and am really hoping I go into remission soon from what ever it is that is sucking the life out of me.
Just want you to be prepared. The treatment is pretty harsh.
Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
Erin, I am sorry you are feeling so bad. It is very difficult when you don't have a diagnosis and aren't sure what you are even fighting.
Thank you for the heads up on the treatments. The doctor hasn't really discussed the medications with us yet, only that they are toxic and very powerful. We are familar with prednisone since my husband was one it for about three years to fight his colitis. It suddenly went into remission and he has been symptom free for about fifteen years. If it makes him sick or gain weight I may have a fight on my hands. At times he can be a very non-compliant patient. With alot of prayer maybe we won't have to go down that road.
I am familiar with lupus but not diffuse sclero. If you read my earlier posts you know that my daughter has been diagnosed with a host of auto-immune disease but only is exibiting symptoms of reynauds. The diseases seem to run rampant through my husbands side of the family. It is so difficult since most patients appear to look just fine but are truly very sick.
Again, thanks for the reply and feel free to keep in touch just to vent or talk anytime. I hope you are feeling better today...................Debbie
Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
Debbie,
It sounds like your trip to Cleveland was helpful. Thank you for sharing your visit with us. I would love to hear about your husband's symptoms and would also like to keep in touch. My husband is 49 years old. It's rare to talk to someone else with this disease. If it doesn't bore you, I will share my husband's story - I will try to condense it as much as possible. I would love to hear more about your husband, too.
My husband first started with symptoms of vasculitis about four years prior to his diagnosis, however we did not realize how sick he was becoming. In the beginning, he started needing naps every day after work. We assumed it was due to a stressful time in his job. Last April, he started to notice that "this achy feeling" in his joints and/or muscles was becoming more pronounced, although he had noticed some of this pain for the previous year. By May, he finally went to his general practitioner. His GP stopped statin drugs my husband had been taking and ordered extensive lab work. At that time, the tests show a high sed rate as well as a positive ANA and Anti Jo-1 antibodies. My husband was referred to a rheumatologist.
The rheumatologist said much the same thing as the doctor told your husband in Cleveland. He didn't want to put my husband on powerful, toxic drugs unless he was sure of what he was dealing with. Fortunately, but unfortunately, my husband quickly progressed from a person with achy joints/muscle and daily naps to one who was unable to move or get out of bed (pain), weight loss, fever, etc. My husband had surgery on his shoulder joint - more to rule out a disease than to find one. They didn't find anything with that surgery/biopsy.
On one of our trips to the rheumatologist, the doctor was looking at a sore in my husband's nose. I mentioned that the sore had been there for a couple of years. At that moment the doctor stated, "I think that sore is more significant than you think". He immediately put my husband on 60 mg of prednisone and methotrexate. It took several days, but my husband gradually began to get better. However, as the prednisone was decreased, my husband began to relapse.
To try to make a long story short, my husband has had a joint biopsy, x-rays and HRCT of the lungs, 24 hour urinalysis, as well as monthly lab tests. The prednisone has been decreased to where he is now taking 15 mg. His sore in his nose has not healed. He has seen an ENT, opthalmologist (it's gone to his eyes), and urologist (it has not affected his kidneys). He has not had a biopsy of his lungs or nose which is more common to do to confirm a diagnosis. However, his doctor felt very confident in the vasculitis diagnosis due to the lab work and the clinical symptoms my husband had.
My husband is scheduled for an EMG/Nerve Conduction Study. I don't know where this is leading, but I think it has something to do with the muscle pains and the positive ANA and Anti Jo-1.
One of the most difficult aspects of this disease is that my husband no longer looks "sick" but he really is. He is in constant pain, but pushes himself to work every day. He is a teacher, so I think he sees a break ahead due to summer being around the corner. He did miss the first two months of work at the beginning of this school year due to this illness. He loves his job and it's what helps keep his mind off of how sick he feels. However, he has concerns about his future and his ability to continue working. The doctor has not given a prognosis, but has treated many vasculitis/Wegener's patients. He is not one to say what he believes the future will be, but he says it is a treatable disease, we just have to get it into remission.
Sorry, this is so long. I just know how helpful it is for us to hear someone else's story and share in the comparisons with ours.
Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
Tammy, It was good to here from you again. It certainly does help to share information and experiences with others.
As far as my husbands story there is not alot to tell so far. His problems started as I has said in his eyes. He developed a severe headache behind his right eye that had him literally in tears. By the next day he was vomiting and having double vision when looking through both eyes at the same time. One eye at a time was fine. This led to CT scans and bloodwork through an optho-neurologist. It was he who diagnosed the Wegeners from his eye condition and blood results. I know his ANA was positive but the rheumo said he did not do a complete set of labs so she was doing that. His sed rate came back elevated but we are still waiting on the rest. I don't know what an anti jo-1 antibodies test is. I will have to see if she ran that.
What concerns me is the time it took to actually diagnose your husband. If I understand correctly it is imperative to get treatment ASAP for a good chance of remission. So much time may have been wasted. Four years is a very long time. Our doctor gave us the impression that the treatment is almost always lifelong due to the fact that even after remission when the meds are stopped there is a high rate of relapse and the patients are always back. I feel like I am sitting on a time bomb waiting for symptoms to appear and my husband is in a huge state of denial. He does have muscular and joint pain but tends to blame it on other things. How is your husband tolerating the meds?
We have follow up appts. next week with a sinus surgeon and his optho. I think he will have a sinus biopsy.
As you probably read auto-immune disease runs rampant through my husbands side of the family. Does your husband have any cases in his side of the family? I am glad that your husband is able to teach right now although that can be a very stressful job. My daughter is a first year teacher. She teaches at a middle school the moderate to severe learning disabled.
Do you think I should call and ask for a report on the final bloodwork when it comes in this week? She sort of left it that she would call us if needed.
This has been a very stressful week for us. Aside from my back and the neverending health issues in this family we just left his parents house where we held a family meeting discussing assisted living for them. UGH!!! When it rains it pours. I will look forward to hearing from you. Take care...Debbie
Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
Hi Debbie,
I'm sorry to hear your family is dealing with so much. I'm keeping you in my prayers.
Thank you for sharing your husband's story. Throughout all of this, I have learned one very important thing......get a copy of ALL records. Our rheumatologist has put in a standing order for us to receive a copy of all lab work. He has even asked us for a copy when we visit because the lab hasn't always sent it to him by the time we have an appointment. We have learned a lot and feel like we are keeping informed with my husband's disease. We don't take the info from the lab tests and panic with each elevated or abnormal result. The abnormal results are to be expected. But having lab results helped us to see how his disease was getting better and then we see how it gradually started to relapse.
Another thing we have done is to document all doctor's visits and days where my husband was really feeling poorly (fevers, weight loss, etc). Now when symptoms return (as they will do with relapse), we can compare them with how he felt before.
As far as the medicines, my husband seems to be tolerating them okay. He has gained a little bit of weight from the prednisone (it's actually the weight he lost in the beginning when he was sooooo sick) and the methotrexate does not appear to have too many side affects. He does feel nauseous a couple days after he takes the chemo, but he says it's not too bad. He also gives himself injections of Enbrel twice a week. That actually seems to be the one drug that helps with the joint pain.
There is no history of any auto-immune disease in my husband's family. This has been a fluke and has left everyone with a sense of dread. I don't know why it seems that when it rains, it pours. My nephew as well as two life-long friends are battling terminal cancer. I know you understand the sense of feeling overwhelmed at this time. Please remember to take care of yourself. You have a lot on your plate. Accept any help that is offered and don't hesitate to ask for help. You are at a time where you need it.
Please keep me informed on how you and your husband are doing.
Tammy
Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
Tammy, Sorry I haven't posted lately. Today is Sunday and my husband started having severe eye pain again yesterday. He is near tears and is nausaus. We were able to get through to his optho neuro and he started him on prednisone which gave him relief the first time this happened. We have appts. with his sinus surgeon tomorrow and the optho on Tuesday. The doctor at the Cleveland Clinic said if he had any reoccurance with his eyes she would start the treatment for Wegener,s. Looks like we may be making another trip to Cleveland this week. His other doctors are in Columbus.
Thanks for the advice on documentation. I plan to start that.
Has the chemo made your husband loose his hair? How often does he take the chemo pills? How often does he have to go for blood work? What amount of prednisone does he take daily? Sorry for all the questions but there's not many with the experience you have with this dreaded disease.
I feel so bad for you and your husband' it's a terrible thing to loose people you love to cancer. I just got a phone call less than an hour ago that my uncle was just put on life support. I know as a Christian this is the time to lean on my faith for support but mostly I find myself questioning God. We both have a greater chance of winning the lottery multiple times than having our husbands get this disease. It will truly be a test of our faith and perserverance. Take care, I will post soon.........................Debbie
Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
hi a quick question i have been very ill for a long time with symptons that seem like they could be lots of tings but wegners keeps coming up as a possibility. imvery ill. i had an anca test it was 13.5 the range was 12 - 20 does this exclude me from wegners? sorry to hear how ill husband is thanks zoe.
me in brief
weight loss fevers
high igg
proteinin urine
chnge in face appearance sinusitus
uncontrolled asthma
cortisol low
joint pain
headaches
chnges to eyes nose features
coughing
chnges to hands
bruising
high igg in lp and protein
high i ge something lik360 should only be 20
weight loss muscle loss fatigue
muscle degeneration
ear ache
Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
Debbie,
I am so sorry to hear about your husband. Hopefully, you will get some help and answers with the upcoming appointments.
As far as the prednisone my husband is on - he started out taking 60 mg in August and it has been tapered down to where he is now on 15 mg. He is taking methotrexate, 15 mg, one day a week. There was a time I thought his hair was thinning from this medication, but he doesn't appear to be going bald. However, the color of his hair has changed from dark brown to an ashen black/gray. It's strange. He gets his lab work done once a month. He has had two HRCT scans on his lungs. They were done three months apart. The doctor says he wants to do the next one six months after the last one. I am anxious to see if there is any improvement.
Please hang in there and don't give up on your faith. We don't know why we have to go through these trials in our lives, but I know there is a reason. Eighteen years ago, I lost a very premature baby. At the time, it was the most devastating time of my life; but I have since been able to offer support to others who have suffered a similar experience. I know there is a reason for what we are going through.
Zoe,
A negative ANCA does not exclude Wegener's. Your body's pains and lab work are telling you something is not quite right. Some of these diseases are so difficult to diagnose. Keep searching and researching and don't accept an answer you just aren't comfortable with - it looks like my husband has another disease (as well as Wegener's) but the doctors kept saying they didn't believe the lab work. I now wish we had pressed the issue a little more. Maybe we wouldn't have lost so much time and my husband wouldn't have relapsed.
Take care to all of you,
Tammy
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Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
Tammy, Sorry for the delay in posting. We are trying to decide which avenue of treatment to pursue. Optho says he definitely has Wegener's and the Rheumo who is a worldwide specialist says she is still not 100% sure. Of course we are clinging to her optimism no matter how small it may be. The sinus surgeon says there is not trace of Wegener's in his sinus cavity which would be very rare. The optho says it is in his eye muscles and does not have to be systemic throughout his body. Which would also be as rare as his chances of even getting the disease. Currently he is on 60 mg of prednisone daily while they discuss if they want to add the metho. The optho scared the bejeebies out of us with the terrible things that could happen to his eyes if we don't start immediate treatment.
It is encouraging to hear that your husband tolerates the meds well if we have to go that route. How are you both doing? I hope well. I assume it is bright and sunny in your part of the country. It is as dreary as my mood is here. I am so sorry to hear about the loss of your child. As a mother I can only imagine how devastating that would be. I guess we never have to look far to find someone else worse off than we are. Well, its late and I need to go rest my back. Fortunately I am recuperating quicker than most from my spinal fusion. At least I can be grateful for that. Chat with you soon, take care.........................Debbie
Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
Tammy, Hi, I hope you are still out there. I can't remember what I told you last but they have my husband on 60mg of prednisone and he will be tapering off for 6 weeks. If he has a third reoccurance with his eyes they will start the chemo. Pray for us , I really don't have a good feeling about this. Hope you and your hubby are doing well.....................Debbie
Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
Debbie
Yikes! I just wrote a response, but must have erased it when I meant to send it. Soooooo.....here goes - again.
I hope your husband is getting some relief with the prednisone. It really is a good anti-inflammatory, but the side effects are not good so doctors will try to get people off as soon as they can. The methotrexate (chemo) is such a low dose that my husband really doesn't suffer too many side effects. The prednisone seems to be more brutal.
We just returned from my husband's rheumatologist appointment. It's always hard to leave and still not have definitive answers. His doctor continues to be stumped as to why my husband is not responding to treatment. He has now put my husband on Lyrica for pain. My husband is taking ten different medicines - and is tired of this. He hasn't lost hope, but he's tired of feeling poorly. I'm sure you and your husband can identify. We just need to keep up the faith and know that this disease has a good remission rate. I just think it takes a long time to get things under control. But from what I've read, most people lead perfectly normal lives with this disease.
I hope you and your hubby hang in there - I will continue to keep you both in my prayers. I know you've had your own health issues. I don't know why, but it sure seems when it rains, it pours. We just found out my brother-in-law has terminal cancer (this is a new relative with cancer) which brings us to four key/close people in our lives with extremely poor prognosis'.
However, I'm an eternal optimist and still believe there's hope for all of them. Perhaps it's not optimism, but denial......either way, I have to believe positively.
Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis
Tammy, Hi, I hope things are going well in your part of the country. We had an unusually warm day here in central Ohio today and it was wonderful to see the sunshine. I find it sort of lifts my spirits in lieu of all the illness around me.
Sorry your husband isn't responding to treatment as quickly as you both would like. I have found out on the back board that everyone responds and heals at different rates in the same situation. I have been lucky to be doing so well with my fusion but their are many who are even ahead of me with the same surgery that are still in a great deal of pain and have no relief yet. I am familiar with Lyrica since it is used on many fusion patients for nerve damage pain. I am on a drug very similar to it call neurontin for nerve pain.
I hope it works for your husband, many people on the back board swear by it.
My husband is showing the effects of the prednisone. He has the moon face already and is gaining weight. He is eating us out of house and home. I tease him that I am afraid to go to sleep at night for fear I might wake up to him gnawing on my arm! I am so relieved to hear the metho's side effects are not terribly severe. I have also noticed some mood swings, but whatever it takes to survive with this. I am so afraid that once he is off the prednisone he will relapse for the third time and then thats when we will get the definite diagnosis. My husband is an eternal optimist too but I think that makes it harder when reality needs to be faced.
I hate to hear there is more cancer amongst your loved ones. Why do terrible things always seem to happen to good people when the prisons are full of healthy rapists, muderers, pediphiles, etc, etc, etc.
I was so glad to hear from you again. I posted on 4/13 and when you didn't reply I tried again yesterday. You may be our only link, other than the people in the medical profession, to someone familiar with this disease.
I hope things start looking up for your family. I will chat with you later.
Take care............Debbie
Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis 
