About my Husband Dean having Wegener's.

[ShaniBooT]

Sorry I don't understand what threads, Tags, or Trackbacks are. I hope you can get this.
To start,
I'm Barbara and my husband Dean has Wegeners. He was diagnosed last Novemeber with Wegeners. He started not feeling good. Tired, losing weight, coughing and his hearing started really going. He isn't good on the computer so I'm on in his place. What happens to him happens to me and our children.

Our regular doctor is a sports doctor. He always takes blood tests. He has his own lab. If you have something he can't do he will recommend a doctor. He is a very good nice and personal doctor. I also have a specialist I go to because I have COPD and Asmtha. He is a very good doctor too in Seattle. His name is Dr. Huseby, MD. He is a Internal Medicine, pulmonary Diseases and Critical Care Medicine doctor. Our Regular doctor (Dr. R. Graham Reedy M.D. P.S) told Dean and I that he was going to call Dr. Huseby and they started trying to figure out what was going on with Dean. Dr. Reedy already had taken x-rays, scam's and MRI's and blood tests. Dr. Huseby figured out what Dean had. Both doctors were so happy to finely find out what was going on. Dr. Huseby had treated Wegeners before. Then Dean got really sick and started coughing up blood.
Dean was put in the hospital right away and given a lot of prednisone, and other medicine's and took him down to cat scan of his lungs. He had quit a few nogales on his lungs. His hearing had dropped so bad just in a week before he went to hospital. He was feeling very weak. Dr. Huseby got a team of doctors to work on Dean. Dean was in hospital for 5 days.

He was sent home taking 60 MG of Prednisone and Methotrexate Bactrim DS and a lot of vitamins. Dean was so weak. He was a man that had a lot of muscle because he is a finish carpenter who lifts a lot of cabinet's and counter tops. He was around a lot of sprays and paints in closed rooms for years. He is 76 years old and after he got out of the hospital he lost all his muscle tone and a lot of weight. His normal weight was 165 and was down to 140 lbs when he lift the hospital. Today is is at 128 lbs. Way to thin.

Dean has never given up. He only stayed in the house for a week after the hospital. This all happened at Christmas 2010. Dean decided he wasn't going to give up and lay back and die. He never told his boss that he was sick. Lucky for Dean that it has been very slow work right now. When his boss wanted him to go and fix a job for the day he would go. He decided this would be a good time to put roof on our house and our son's who lives next door. He did that this summer. He then painted our house and shed's. He would go outside at 9 in the morning and I had to make him come in for lunch and finely have to tell him to come in at night. He was not going to let this very bad disease get a hold of him. I know he was not feeling good. Some morning's he felt weak and would go back to bed for a hour or so to feel better. Then he started having a relapse. His eyes hurt and he had headaches. His ears was so bad that he couldn't hear at all. I had to run after him if I wanted something or for him to hear me at all. We live on 12 acres so I had to try and run to get his attention. I can't breath good when I run. Now for me I'm feeling stronger then I ever have. I think it is from running after him and yelling at him. One day he lift the back hoe running while he went to town. I went next door and asked my son why Dad lift the back hoe running. He said I don't know and went out and turned it off. When Dean got back I asked him and he said he didn't hear it. Even with the hearing aids he has. Then we were told that Rituximab was oked for wegeners. We new about his drug, but it cost way to much for us to ever give him. Now they have accepted it. We were so happy to hear about that.

Dean just finished his 4th infusion of Rituxan. He is feeling so much better now. He still is only 127 lbs. but he started back to work this Monday. I'm worried about him because he can't hear well and is not as strong as he once was. He is working on the Washington State University, 5 hours away. So far he is eating and taking his medicine. We have went through our savings and need to work when he can. Dean and I want him back to normal the way he was before this all happened. But, he doesn't feel the same and will not probably get back to normal.

Dean is not on Methotrexate any more, because the doctor thinks it wasn't working for Dean. Dean also is down to 10 MG of Prednisone now. Every time he starts to get lower he gets a relapse. He says he might try the Methotrexate again if needed. Dr. Huseby has a team of doctors that are specialists. Dr. Anthony M. Krajcer, MD he is a Rheumatology doctor. He makes the decisions on what Dean is taking. Then there is Dr. Alex D. Cooper MD who Dean sees for his bones and walking. He is a Neurologist. All of these doctors are with the Polyclinic in Seattle, WA.

We believe Dean has had Wegeners for the last two years. He was having this buzzing in his ears for all that time. We went to at least 5 ear doctors during that time. One of his ears is not hearing at all and the other one has two big holes in it. He still can hear if you get right up to him and yell in his ear. Life isn't what it use to be. We would go out to dinner and that is when we would update everything in our life and just relax. Now we don't enjoy doing that much. Who wants to just sit and not talk or have everyone in the room hearing what you are trying to say. That is why I say that it not only affects just the perosn that has Wegeners, but it affects all family members. I know that it is much easier for me then Dean. He has to put off not feeling well and maybe getting sick again. We have been married for 52 years and I sure want to have our 75 one.
Thank you for hearing us.
Barbarra and Dean

[Psyborg]

Welcome to the forum Barbara and Dean. Your story sure sounds familiar to most of us I'd guess. You should be able to get some great information here. Just make sure Dean takes it very slow if he's back to work. Overdoing things can bring on a flare if you are not fully controlled.

[elephant]

Welcome and tell Dean to listen to his body. He still needs to rest when he is tired. There is nothing to prove, the Wegeners Disease is not a person it doesn't have feelings, it's very sneaky. So hang in there we are here for you.

[RCOSSIO]

This is a great forum..use it wisely for research on others experience. You will see how many of us have or have not gone through similar situations. I am sure most of your answer's can be found here.

BTW...venting is allowed in this forum, SCREAM AWAY!!!

We here, always!

[Al]

Barbara and Dean--

Though there are always variations, your story is familiar. And you are absolutely correct: In every way I can think of, a disease like Wegener’s impacts the whole family--and, by “family”, I am including friends and even business associates. But it is the core family that usually makes it work--or, alas, sometimes doesn’t. We are all proud of you for stepping up to the plate!

I am familiar with the Polyclinic (my handlers are at the Minor and James Clinic, just up the street, and one of my wife’s students is a Polyclinic doctor). They should be very competent, and are capable of taking a team approach, though whether they actually do do the team thing is another matter; that works best when the doctors are all on salary, like at the Mayo Clinic, rather than billing everything à la carte. In all cases, I advise asking the hard questions, and even getting a little mad (I call this rage therapy--and it helps!). True, the doctor probably knows more than you...but maybe not that much. The trick is to get him or her off-script, and a little humble.

I doubt that Dean’s working around noxious fumes was the direct trigger for the Wegener’s--that was more likely an infection. However, bad work conditions of all sorts can put extra stress on many body systems, including the immune system, which sometimes responds by going into a tizzy inappropriately. Other stresses can have the same effect. I’m sure that dean enjoyed putting up the new roof--and it is critically important for a sufferer to feel that he or she is still productive--but doing so under a time crunch is demanding. In my case, both our kids got married within 6 weeks of each other last year. Talk about dealing with stuff....I had a relapse shortly after.

It is because no one knows how to house break an immune system that throws tantrums that the doctors give you all those medicines. This is not an ideal situation, but it’s all we have at the moment. The thing to watch out for is new infections, of any kind. Sleep in good, and so is work, at least of the puttering around kind. And if Dean gets a cold or any kind of fever, report in immediately!

We’re all rooting for you to reach that diamond anniversary!

Al

[Sangye]

Hi Barbarra and Dean, welcome to the group. I'm sorry you've been going through such difficulties. It's early on to tell what condition Dean will be in as he recovers, though it's unlikely that he'd be fully restored to the way he was. Somewhere between Better Than This and Not As Good As That.

While Dean is seeing specialists, they are not specialists in Wegener's. I suggest you get a consultation with a major vasculitis center. We can help you find one nearest you. Having a Wegs specialist is the number one most important variable. It makes an enormous difference and will give Dean the best chance at the best recovery.

[Chris G]

Welcome barbara & dean. Replying via smart phone & it's a pain so I just want to quickly say that they should be giving the rituxan some time to work before reducing dean's pred. I had rtx in may and have just gotten to 10mg. If he's already @ 10 that's really fast. I was only able to lower to about 20mg after about 8 weeks post rtx. The rtx needs about 8 to 10 weeks to kick in I believe.

[Dryhill]

Hi Barbara and Dean,

Welcome to our very exclusive club!

I must stress that Dean should not overdo things. It is great that Dean feels that he can do things around the hosue and go back to work, but it is essential that he paces himself and if he feels at all tired he MUST rest. A couple of weeks ago I had increased my working hours and was feeling great, a few days later I got up and had breakfast as usual but within an hour I was back in bed for most of the day. WG has a way of reminding a person that they are NOT well.

[ShaniBooT]

Thank you all very much for the feed back. Dean started coughing a little tonight. I asked him if that was a new thing and he says he does it sometimes. I worry that he will get the spots on his lungs again. We have an appointment in Seattle with his Wegeners doctor on Monday. I will ask him if he is taking Dean down on prednisone to fast. Last time he took him down to 10 MG Dean started having problems with his eyes and very bad headache and he was coughing. He was sent to emergency right away and they gave him a CT and found he had two spots on his lungs. That morning he started throwing up. His doctor put him back on 60 MG of prednisone and started him on Rituxan for 4 weeks. He has been going down on prednisone now for about 6 weeks and it is down to 10 MG again. It has been two weeks that he has been off Rituxan treatment. I watch him very close now, because I don't want him to get real sick again.

[Al]

That sounds to me like a very fast weaning schedule off pednisone. I would ask about it. There are more to lung issues than spots. Has Dean had a CT scan lately?

Al