New Here and VERY scared (Long post)

[Christine1219]

My husband has been extremely ill since the end of September. He was having a lot of pain in his pelvis and prostate. The urologist began by ruling things out - no kidney stones, no bladder or kidney issues, etc. This led to them thinking prostatis. He was being treated for that about 2-3 weeks and was deteroriating. Was not responding to any oral or IV antibiotics. He was in such severe pain and could not empty his bladder that we brought him to the ER. CT scan showed bladder outlet obstruction which they were attributing to an enlarged prostate. They put in a foley catheter and sent him home with pain meds. It was a terrible weekend. He suffered incredibly. Monday we went back to the ER and he was admitted. The urologist did a partial TURP (trans urethral resection of the prostate). Clinically nothing was adding up. He was in the hospital a little over 2 weeks when they came in and said there is nothing more they could do for him! They did another CT scan to check on the prostate and the lower lungs were visible in the CT scan and showed lesions. They thought the infection was seeding to his lungs and heart. They did a bronchoscopy and that is how he eventually got his diagnosis of Wegener's. They started him on Prednisone and Rituxan. He was in the hospital for 22 days, came home for 4 and had to go back because of high temps and an extremely high white count. He is home again, but not doing well. He has a very aggressive cough that produces a lot of bloody sputum. He is in constant pain in his sinuses and he has since hurt his hip and is using a walker. My husband is only 37 years old and we have 3 young children ages 4, 2, and 6 months. The MD's said his case is very unusual to how it began. I am here seeking support and wondering when/if things will improve for us. It has been so bad for so long. This disease is truly ruining our lives.

[Dirty Don]

Welcome Christine, you are in the right place for direction, caring, confidence, and experiential knowledge. If you have time, put your husband's symptoms in search on here...you should draw some similar threads compared to his. Ask lots of questions, everyday if you have to...someone is bound to be on here anytime of day or night. The unfortunate part of what appears to be a serious onset that most of us recognize (I spent 17 days in hospital, 10 in a coma, and at least 6 mos on my couch at home before I even began to feel right again) is that it takes the drugs somewhere in the 5-6 week range before they show real progress. Sighs...yeah, it's a long road, especially for those of you who are young and with families. Generally, with rtx and pred, there will be some improvement in about 3-4 weeks. Depending on the dosages of pred he will feel slightly better (though not disease-wise...no cures yet) as the pred is nearly an immediate reaction. How much pred is he on, how many doses/infusions of rtx has he had? AND, most of all, you need a WG experienced doc to run the show...if you don't have one (usually a rheumatologist), then there are ways to link up your docs with experienced WG docs thru the Vasculitis Org. Docs who mean well, but don't know this disease other than reading protocols from a book, generally don't get the patient up to speed correctly or fast enough. Get in contact with WG docs, please. Of course, part of that depends on where you live...and, one more, be assertive with your docs...they are YOUR employees...don't take their answers for granted...ask, search, ask again...

Best to you both, stay on here Christine and ask, vent, share...it all helps.

[Christine1219]

Thank you so much Don! Receiving your message has definitely provided me with a feeling of hope after much anxiety. My husband is taking 60mg of prednisone daily. He has had 2 rtx treatments and is getting his third tomorrow. He will be receiving that infusion at the oncologists office. He does have a rheumatologist. Do you know if there is a specific place that specializes in WG i.e. like a Dana Farber or Sloan Kettering of the WG world? I am so glad to have found this forum. Thank you again!

[JeanMarie]

Christine, good advice from Don & I can't really add anything. The part about having a rheumatologist experienced with wegs is most important. I'm so sorry your family is going through this & I hope your husband will be feeling better soon. Your reaction is similar to mine when I was first diagnosed-I remember thinking "this is going to ruin our lives" but it hasn't. I do have a new normal--things are different but still life can be good. Also, go to the vasculitis foundation web site & read through their info--the more you know the better off you will be.

[JeanMarie]

In answer to your question to Don-here's a list of docs recommended by the foundation VF Medical Consultants

[Dirty Don]

Phil, on here, knows more WG docs and people than anyone on here, so you may PM him or he'll see this eventually. Again, locale can affect who you get to see and how fast...also, some insurances don't go for the big research hospitals, which are the best at handling this disease. Cleveland Clinic, Mayo in all locales, Johns Hopkins, and many other research hospitals recognize and deal with AIs very well...as well as can be expected that is. If none of this is a problem for you two, then I'd search out the best that is nearest me. I live near Phx, had ideas about going back to Oregon some day, got WG, have Mayo here...'nuff said, not going back to Oregon nor leaving Mayo anytime soon!

[whatthewhat]

Hi Christine,

I am so sorry for what you all have been through. I am grateful, however, that he has a diagnosis now. Don has such wisdom, as do do many on here. I will just add that taking one problem or symptom or medication at a time helped save my sanity in dealing with my daughters diagnosis. I easily was overwhelmed by things i read or feared might happen, and i found i did better when i focused on three task at hand so to speak. Hang in there. There are better days ahead.

[Debbie C]

Hi Christine and unfortunatly welcome to the forum. Sorry for the suffering your husband is going thru ( as well as you and your children ) this disease does effect the whole family. And to go thru it over the holidays must be really hard. Like Don mentioned your priority is getting a dr. that has knowledge of wg. Since it can effect every organ in the body you will find that you will have a list of drs. you will be seeing. But hopefully the rtx will kick in soon and the pred .will help. I will prayer that he is well enough in time to enjoy the holiday season. Keep us posted.

[annekat]

I'm sorry you have reason to be here, Christine, but welcome, and keep participating here however you feel you need to... Don is right that you can learn a lot by searching the archives of the forum. The way your husband's disease started out really sounds unusual to me, but then Wegener's can affect any part of the body and can be capricious in how it decides to manifest itself. I also had the lung lesions that they found in your husband, after a couple of years of being undiagnosed with lots of sinus and ear problems. That is a more typical story. Well, I don't have a lot to add right now to what others have said, except I don't know if anyone mentioned that there are a lot of rheumatologists who aren't experienced in treating WG and don't know a lot about it. So I guess we'd like to know where you live and get treated and whether your rheumy might be a reasonably good WG doc. And Don is also right that Phil knows a lot of good WG docs who aren't necessarily on the VF list.

Most of all, I hope your feeling of being scared will subside somewhat once you know more, have read of others' experiences, and when you start to see some improvement in your husband. It sounds like he is getting the right treatment, and September is not that long ago to have started getting ill with WG. As others say, it could take a few months to see a lot of improvement. Do hang in there and keep us posted!

[Ole68]

Hi, Christine.
I've had WG since 1996. I was lucky in that I'm close to Mayo Clinic, they diagnosed it and have kept me going. I have it in my lungs and kidneys, but it's in remission. My physician is Dr Specks a leading expert on the disease. Hang in there, I'm still around and enjoying life.