Husband diagnosed with WG

[NikSyd]

Hi, I am so glad I discovered this site. It has helped me so much as my husband and I go through the process of learning about Wegener's. I expect to introduce my husband to this site but he just came home today from being hospitalized for almost four weeks. We live in AZ.d

He has been very sick since January of this year, but when we look back we both realize he had been having sinus problems and fluid in his ears for years. He is 43. This recent diagnosis stems from his getting a cough right around 1/1/11. He then began coughing up mucous tinged with blood and having night sweats and fevers. He was initially diagnosed with pneumonia and ended up being hospitalized for a week. I give the doctors credit because even during that first hospitalization they mentioned WG as a possibility, due to nodules on his lungs and other symptoms like a "rash" on his foot. Once there was no infection from cultures taken from a bronchoscopy, we waited to get the results of the c-anca test. He was at home but not improving at all. The result was positive and he as set for a nasal biopsy when he ended up in ICU on 2/4 and was coughing up blood clots. They had to intubate him. After he was taken off the ventilator, he was so confused and was having problems keeping meds down. Once he got out of the ICU he started physical therapy as he has weakness from being in bed so long intubated and sedated, and he has tremors of his hands and legs. His speech is slurred and I am not sure if it is the meds or something else. He came home today and has an appointment Friday with a rheumotologist who was recommended to us by the pulmonologist who has WG patients. Since 2/4 he is on cytoxan and prednisone and also started taking bactrim, nystatin rinse and fluconazole since then. We expect the rheumotologist will look at the meds and determine whether any changes should be made? His kidneys have remained unaffected.

Has anyone had slurred speech, tremors? At the hospital they think it is from him being weakened and losing muscle mass but.....I am not sure what to think.

I so appreciate the section about what to know for the newly diagnosed. I have been in this mode of making decisions and learning all I can due to my hubby truly being incapacitated before. He literally woke up and wondered where 2 weeks had gone and has had to wrap his brain around this diagnosis when I had those 2 weeks to talk to the docs and research on line.

Thanks for any suggestions. Nikki

[renidrag]

Nikki:
Glad you found us and sorry you needed to. Others will be along soon to help and listen, they must still be in bed. As you probably know WG manifests itself individually to us all. Some worse than others. All the good people here have been a huge help to me in my journey. I am sure when the sun comes up the replies will start coming. Maybe you could list the dosages of the meds, the list you gave is almost exactly what I started out with except for the nasal rinse, as I only had lung involvement. My best to you and your husband.
Dale

[Jack]

Hi Nikki, sorry you had to come to find us, but glad that you have already started your research and have gained something from the site.

Wegener's is such a little known disease and so diverse in its symptoms and the reaction to treatment that you really do need all the expertise you can gain. You can then be in a position to guide things in the right direction if they start to go wrong. I'm afraid that unless treatment is being led by a doctor with a great deal of experience in the treatment of Wegs you are going to have to keep an eye on progress and not be afraid to speak up if there appears to be a problem. This is where the combined experience of the forum members can help so don't be slow to ask any questions.

It is very early days for your husband and his body and mind have been subjected to a terrible shock, but things are going to get much better as the medication begins to take effect. What doses is he on at the moment? Remember that this is a very long journey and it can take several years simply to come to terms with the fact that life is never going to be quite the same again. However, if things go well, it can certainly come very close.

[Jules]

Hi Nikki, I'm a relative newcomer to this myself, so don't have a lot of experience to share BUT did present in an almost identical way to your husband and went through the pneumonia/menengitis diagnosis route originally when admitted to hospital. When I was first put on ctx and pred I had almost uncontrollable tremors. . . couldn't hold a cup without spilling its contents. Although I still get them, they have lessened dramatically over the weeks, but definitely get worse if I have any form of caffine!

Jules

[Sangye]

Hi Nikki, welcome to the group! Wow, what a coincidence. Just a few minutes ago I started at new thread with a link to an NPR discussion of ICU after-effects. Your husband's slurred speech and tremors are concerning. I don't know if it could be an after-effect of the ICU treatment (you'll have to listen to the discussion to see what I mean) or if something else has happened.

Has he been evaluated by a neurologist for those symptoms? I would call your doc right away and ask what to do.

I lived in AZ for 11 yrs (Flagstaff and 1 yr in Sedona) before moving out here to Maryland. Where is your husband getting treatment out there?

[NikSyd]

He was at St. Joseph's Hospital in Tucson, where we live. His treating pulmonologists were Mallampalli and Huang (who I thought was amazing). No rheumatologist on staff there we discovered. We are going to see a rheum dr. tomorrow, Dr. Karl. I was told she has other WG patients, but there do not seem to be any specialists in AZ. I saw a thread posted here re the Univ of Utah so we are keeping that open as a possibility if we are not satisfied.

I will check out that link re the ICU you posted.

He was not examined by a neurologist. They did a brain scan and saw nothing unusual except sinusitis-imagine that! Later I was told they were concerned about vasculitis in his brain. The doc wrote a prescription for him to get a neuropsych eval before thinking about returning to work to assess what his limitations are re focus and stressed that he would need to take it easy as will wear out quickly. Perhaps we should schedule that exam or a neurology appt now?


An earlier reply asked me for the dosages of the meds:

Cytoxan, 100 mg, 2x a day, tablets
prednisone, 60 mg 1x per day
Bactrim 20 ml liquid, every Monday, Wednesday and Friday
nystatin rinse 4x a day
protonix, 1 40 mg tablet, 2x a day

Thanks!

[NikSyd]

Hi Jules I read all the replies to my hubby and he agreed that he would immediately stop caffeine (tea) to see if that helps. Thanks for the suggestion.

[Sangye]

Nikki, did they do a CT scan or an MRI of his brain? Did they use contrast dye? Please call a neurologist today and get him properly checked out. You need to stress to them that you know him best and he is definitely slurring his speech, etc... Many times if it's subtle a doctor will think it's just his normal speech. The doctors in the ICU discussion made a point of saying how important family input is.

Also, I would encourage you to get him to a Wegs specialist asap, even if things look like they're progressing fine. Actually, the best time to get to one is when things are going okay. (A crisis can mean he can't be transported, etc...) Here's a thread that explains why and how to get help.
http://www.wegeners-granulomatosis.c...need-know.html

[NikSyd]

Thank you for the info. He had a CT scan but I don't know about contrast dye. We are seeing the rheumatologist today so I will bring up that and the slurred speech and get him to a neurologist. He says his tongue feels swollen and he makes perfect sense in what he is saying when I can understand him, but I too am very concerned. As far as Wegener's specialists, I assume my info is correct that there aren't any in AZ?

[Sangye]

Yes, you are correct. After my local rheumy in Flagstaff totally messed up my care, I began treatment at Mayo Scottsdale. Unless things have changed, they don't normally provide ongoing care for Wegs. They do a thorough workup and then generate a treatment plan for your local docs to follow. However, there are no Wegs specialists at that Mayo location. I thought my doc was (I didn't know much back then). I convinced him to keep me as a patient since I had no alternatives (only one lousy rheumy in northern AZ). He was better than a local guy but still put my care in jeopardy. This is why I suggest you travel to a major center.