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  • Help, My Husband Just Diagnosed With Wegener's Grandulomatosis

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    Old 04-13-2008, 07:03 PM   #16
    debbie363636
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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

     
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    Old 04-22-2008, 02:30 PM   #17
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    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

     
    Old 04-22-2008, 10:35 PM   #18
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    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.

    Take care,
    Tammy

     
    Old 04-23-2008, 05:30 PM   #19
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    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

     
    Old 05-09-2008, 08:49 AM   #20
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    Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis

    Tammy, I haven't heard from you since my post on 4/23. I just wanted to let you know that my husband got the final diagnosis this week that he does have wegeners. It has been found in his kidneys. I just felt the need to chat with you. Are you still out there?

     
    Old 05-09-2008, 09:52 PM   #21
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    Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis

    Debbie,

    I am so sorry I haven't written to you sooner and I'm even more sorry to hear about the confirmation of your husband's diagnosis. I know this has to be so shocking even though your suspicions were so strong in knowing that he had this disease. If it's any comfort, it seems that my husband has stabilized in this disease and even has some good days. Once the diagnosis is confirmed, the doctors can be more aggressive with the treatment.

    I know it must sound scary to learn that your husband has Wegener's in his kidneys, but please hang onto the statistics that show how treatable this disease is and how many people do end up leading normal lives.

    What are the medicines your husband is on? How much prednisone is he taking? My husband appears to be tolerating all of his meds well. He recently had a CT scan of his lungs and they have stabilized. That's better than them getting worse, but they still show some disease.

    Anyway, please write me back and let me know what treatment your husband is on and how well you BOTH are doing. I can't imagine all that you are going through. Hopefully, you'll be getting some sunshiny days soon.

    Take Care,
    Tammy

    Last edited by dandelion3; 05-09-2008 at 09:54 PM.

     
    Old 05-10-2008, 05:29 PM   #22
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    Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis

    Tammy, Thank you for your kind words. This past week has been very stressful for my husband. He is always so optimistic but this time the worst came true. I wish it were me, I would be able to handle it better. I think women are better with pain and sickness. I think men feel it is a sign of weakness and a defect in their manlihood. We are currently trying to get his parents placed in assisted living and that is also very hard for him to cope with right now.

    Tom is on 60mg of prednisone daily. He is starting to retain water and get that "moon" face. He is on four 50mg of cytoxen (chemo) every morning and then he has to drink plenty of fluids to empty his bladder every two hours since it is toxic to his bladder and kidneys. He is feeling sick to his stomach alot and has had the dry heaves. He also said food tastes strange to him now and it also has a weird smell. He still has his hair after one week of treatment but that may fall out soon. I am hoping that doesn't happen because he will then "look" sick and that will be hard on him. Currently only close friends and family know about his illness. He has to go to the local hospital every week for bloodwork and some type of antibiotic breathing treatment. The breathing treatment I believe is to help keep him from getting sick since his white blood cells are being depleted. So, how does this compare to the treatment that your husband has had in the past?

    I am glad to here that your husband (name?) is doing better. Being stable is always better than getting worse. It is good to here that he tolerates the meds well. Hopefully Tom will too whan he gets on a maintenance program. How are you family members with cancer doing? I feel like we have a bond and I would like to know more about you and your family if you don't mind my asking.

    Tom is 52 and I am 51. We have a son that is involved in my husbands company that is 25. My husband owns an RV dealership and a real estate investment company. Our daughter is 23 and a school teacher for special needs children that are moderatley to profoundly retarded. I do not work outside of the home. My son has been married for two years and we are anxiously awaiting grandchildren. Sometimes this scares me due to the rampant autoimmune disease that runs in our family. My daughter has four of them and my son has one. I just found out my son is being tested for another one (colitis or chrons). We live in the central Ohio area and have a condo on Lake Erie. We like to boat and travel and have been to LA but am not familiar with the area of California that you live in.

    Again, I am so glad to have heard from you. I know I have been rambling but when illness comes into your life your priorities change and so do your friends sadly to say. Thats when you find out who truly are your friends and will stick by you. I have a large family (6 brothers and sisters) and Tom has a twin brother and two sisters. They will be a great support system, but there's nothing like talking to someone whos been there.

    God bless you and your family and I will be loojking forward to hearing from you soon..............Debbie

     
    Old 05-10-2008, 10:26 PM   #23
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    Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis

    Hi Debbie,

    Thank you for filling me in on your husband and family. My husband's name is Chuck. He will be turning 50 at the end of this month. For the first time in his life, he wants a "real" birthday party. He admitted he doesn't know if he will see another "big one" (birthday milestone) and we have quite a party planned. It must be on a good date and at a good time, because there seem to be quite a few people coming. (Okay - I'm starting to panic). Because Chuck is a school teacher and missed the first three months of school last year, almost every one we know knows how sick he is. I really do think that's why so many are making it to his party. My birthday is also at the end of this month and I will be 47. WOW! I don't know where the years went. We have three children; our son is 21, and we have a daughter who is 20, and our youngest daughter is 16. The two older ones are students at a college which is a little more than an hour away (which is not too far - but for them it's far enough). Our youngest is a sophomore in high school. We also have a "son" (age 21 also) whom we adopted in our hearts nearly four years ago (he's not really adopted - but he is now a part of our family). He is a friend of our sons and when he entered his senior year in high school, his father told him to move out. We could never figure out why as he is one of the sweetest and kindest persons you'd ever meet. He is a firefighter and calls us "mom and dad".

    From what I have read, cytoxen is a bit more potent than methotrexate. I'm really sorry to hear about your husband's side effects. It's so strange that to get better, you have to get sicker. When Chuck was able to decrease the prednisone, he felt worse as far as pain goes, but better because the side effects of prednisone were pretty yucky - insomnia, shaking, moon face, weight gain, etc. Does your husband have pain? That has always been and continues to be Chuck's main complaint. I use the word complaint lightly as Chuck is not one to complain. In fact, I think that's why he got as bad as he did; he never said anything for months or years. I completely agree with you that it's harder for some men to share their well-being for the fear of appearing weak.

    As far as my relatives and close friends with cancer - they are doing okay. My brother-in-law (kidney/liver/thyroid cancer) had surgery last week on his thyroid and seems to be alright. My nephew (malignant schwannoma) has been doing alternative treatment since the doctors told him there was nothing left they could do. He actually looks better but still is very tired and battles illnesses. The alternative treatment program he went on was in another country. It claims to be able to treat autoimmune disease as well as cancer, but we are not ready to try something so drastic at this time. We tend to favor modern medicine. But it does seems to be helping with my nephew. My friends seem to be doing as well as they can be. But they each have reached the point where they require constant care/watching. I don't know why so many loved ones are so ill.

    How are you doing? How's your back? I hope you are remembering to take care of yourself. You certainly have a heavy burden and it's so important for you to keep your health up.

    What's the weather like your way? We have had some beautiful days with the sun shining. Next week it's suppose to get in to the 90's. Ummm - won't be long before we are whining about the heat. But I do love summer and look forward to the longer days. We live in northern California between Sacramento and Lake Tahoe. It's a beautiful area and we feel so fortunate to live where we do.

    Thanks for sharing so much with me.
    Write again when you can.
    Tammy

     
    Old 05-11-2008, 05:56 PM   #24
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    Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis

    Tammy, Wow it is amazing how alike our lives are! My husband's twin brother's name is Chuck. They are identical twins but have different autoimmune disease. Maybe your Chuck is really Tom's twin seperated at birth! That would be a great lifetime movie. We also adopted (not formerly) my daughter's best friend her senior year of high school. She has been in the foster care system all of her life and had no where to go after graduation. She also calls us Mom and Dad and just left us to live in Hawaii with her husband who is a marine and just returned from Iraq. He will be on a 6 month rotation to Iraq from there.

    You sure have your hands full with two children in college and a daughter in high school. How do they handle their father's illness? My children have been reluctant to discuss it so I just answer any questions they have and will let them come to peace with it in their own time.

    The cytoxen is a stronger drug than the metho. He will only be on it for a few months I hope. If his labs improve I think they will put him on something milder and lower the prednisone dosage. He doesn't camplain of much pain but the insomnia is really bad. He seems to be up all night these days. Has your husband ever been on cytoxen?
    The specialist at the Cleveland Clinic said you need to hit this disease really hard in the beginning for the best results of a remission. I was wondering since you said it has been dificult to get him stablized.

    I am doing OK. Thanks for asking. My back is improving but I tend to overdo it some days and then I really pay for it. Like I said I hate to complain or mention it because it seems so trivial compared to what Tom is facing.


    The weather here is horrible! It has rained everyday for the past few days and for the next week. It is also cold and so damp. I am looking forward to a break in the weather. I envy your California sunshine.

    I will pray for your family and friends. Tell your husband he needs to believe that he will have more milestone birthdays and never to give up. Take care.....Debbie

    Last edited by debbie363636; 05-11-2008 at 06:00 PM.

     
    Old 05-11-2008, 11:35 PM   #25
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    Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis

    Debbie,
    It really is amazing how alike our lives are. I didn't mention this before, but my brother's name is Tom. I imagine the more we write, the more we will find we have in common. I also didn't mention that many years ago, I was diagnosed with Crohn's Disease. If I do have it, it is mild and I haven't had a flare-up in years. I hope your son doesn't have Crohn's. It is not fun when you're in the throes of a flare. But - all autoimmune diseases sound pretty debilitating.

    I have wondered about my husband being put on methotrexate instead of cytoxin as his initial treatment. From what we have read, you do need to treat aggressively and then taper off the toxic meds. However, because it's not in his kidney's, I think his doctor is more conservative. But it's getting frustrating. Today he was really dizzy and loopy. He was kinda funny in his actions but it was a little bit worrisome. He couldn't even drive because of his dizziness. That's when I realized how "loopy" he was. Has your husband had anything like that? We were wondering if it was his meds, but there hasn't been a change in what he's taking. So, we will wait a little bit to see if it continues. He had similar symptoms two nights ago, but thought it was because he took the metho. and enbrel at that time. He also slept ALOT today. He just couldn't stay awake. It's days like today when I'm reminded that he's still sick.

    I was telling Chuck about your husband. He reminded me that when he got to 30 mg of prednisone is when he started to feel better in regards to the side effects. But, he did end up on a sleeping pill, Ambien 10 mg, and has been taking it ever since. In fact, we wondered if that's why he was acting so weird today, so tonight he is not going to take it. We'll see if it makes a difference. It did help with his insomnia though- and he's been taking it for months so it doesn't make since for it to cause this new symptom.

    How's your husband? Is he able to work? I don't know at what point he is - but there was a time when Chuck didn't get out of bed for several days in a row. Those days seem like a blur now, so I hope that tells you it will get better. Our children don't like to talk about their dad being sick. It's a scary concept to them - especially our son in college. I agree with you that they will deal with it in their own way and time. Our youngest, probably because of her youth, will ask more questions - but she still worries.

    Well, it's late so I better go. Please take care of yourself and your family. I appreciate your writing.

    Tammy

     
    Old 05-15-2008, 07:27 AM   #26
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    Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis

    Tammy, Hi, I hope things are going well for you today. We are heading into another week of chilly weather and rain here. I think sunshine would lift our spirits.

    I found out yesterday my sister's husband was diagnosed with one of the 15 vasculitis diseases too. She is my younger sister, 41 years old. He has polyarteritis nodoosa also known as PAN. It is similiar to Wegeners in a way and the treatments are also very similiar. What are the odds of two sisters marrying men with such rare diseases! I don't know if you have ever checked out the website vasculitisfoundation.org but it describes the disease there along with the other 14 diseases. There is info there on Wegeners, support groups, testimonials, future vasculitis events, etc, etc. I read some of the testimonials and two of them were from really young boys, one was 17 years old with Wegeners! There was also one from a young mother that just had another child several years after diagnosis. It is a very good website.

    I am sorry to here your husband is having dizziness. Tom has not had that. That is a terrible feeling. Hopefully by the time you read this he is feeling bettter. Tom is still working and actually functioning fairly well. His blood pressure is way to high even on meds. He is seeing the our primary care physician in the morning for that.

    Well I need to start my day. Best wished to you and your loved ones............Debbie

     
    Old 05-29-2008, 06:31 AM   #27
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    Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis

    Tammy, Hi, I haven't heard from you since my last post. I hope things are OK with your husband. You both are in my thoughts......Debbie

     
    Old 06-01-2008, 08:15 PM   #28
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    Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis

    Hi Debbie,

    So sorry I haven't written. It's been crazy with the end of the school year happenings and Chuck's birthday. We went to Chuck's doctor last week and he said that Chuck has stabilized because of his medicines - but without the meds, he would be right back at square one. So......the doctor said Chuck will be on medicine for "a long, long time." Chuck still has some good days and some bad days. But we just received news that our dear friend with breast cancer has only a short time to live. It sure minimizes our own concerns and complaints.

    Anyway, I hope all is getting better for you and your husband. I do continue to think of you and look forward to hearing from you again.

    Tammy

     
    Old 06-03-2008, 05:58 PM   #29
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    Re: Help, My Husband Just Diagnosed With Wegener's Grandulomatosis

    Tammy, Hi, it was good to hear from you again. How did the birthday party go? I hope it was a blast! I figured that you were busy preparing for it.

    I am glad to hear that Chuck has stabilized. From what the specialist told Tom and I the medications will probably be for the rest of his life. I didn't know if your doctor had told you that or not. The goal is to get Tom stabilized on the cytoxen and high dose prednisone for 3-6 months then switch him to a milder form of chemo (metho probably) and lower the steroids. She said that after three years of treatment you are considered in a remission but if taken off the meds there is almost 100% chance of relapse before a year. Her feeling I think is it is better to stay on low dose maintenance then to relapse and start over on the cytoxen again. I bet Chuck is looking forward to his summer break. I know my daughter and daughter-in-law are. Hopefully he can rest up and regain some of his strength.

    We don't know how Tom is responding to his treatment yet. We go back to Cleveland next month and will get his blood work results that have been sent over weekly. I am assuming no news is good news and that he must be stable or improving. He is very tired from the chemo and the insomnia. He also get sick to his stomach every morning. He goes to work everyday but not until 10:00 or 10:30 AM. I am glad he is self employed and doesn't have to go in if he is not feeling well.

    Sorry to hear that your dear friend is nearing her end time. It is so very sad.
    It seems every where I turn someone that I love or know has been diagnosed with an illness. An aquaintance of mine was just given the news that she has Lou Gehrigs disease and has 11 months to live. I think that is one of the worst ways that there could be to die. My heart breaks for her.

    Well I guess I better sign off. Have a great evening and a belated happy birthday to both of you.................Debbie

     
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