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

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:confused:

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:confused:

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

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

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.

Good Luck and keep us posted if you can.

Tammy

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

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.

Erin S
Dallas TX

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

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.

I hope to hear from you again.
Tammy

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

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

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

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

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

Please bring your attention to the posting policy.

Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board.

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

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

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

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

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?

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

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

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

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

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

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

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

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

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