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[terrilyn18]

Hi everyone, I'm new to this site. My husband was diagnost in Dec. 2009. I have been on different sites every night. I asked doctors nurses everyone if there was a support group, everyone said no. I just happened apon this site two days ago. Everything i read has been cosistant with what has happened with the exception of the internal bleeding he experienced in Jan. i almost lost him. I do have a question if anyone knows the answer. can you take the cytoxin and orednzone late evening instead of the morning. It knocks him out for one to two hours every day. i would rather he take it at night. Do you kniow if it would make a difference?

[jola57]

Hi Terrilyn, I am sorry your husband was diagnosed with wegeners. Please post his story if you can. This forum is an informal gathering of wegeners sufferers, we do not offer professional advice but rather share our collective experiences and methods of coping with this devastating disease. I am glad you found us.
The reason why cytoxin is taken in the morning is so that you have the whole day to flush it thru your system by drinking a lot (and I mean a lot) of water. The drug is know to cause bladder cancer, and it is very important to flush the drug out of the system and especially the bladder by drinking at least 2 liters of water (not all at once ). If your husband takes cytoxan at night, he will not be able to drink the necessary quantity of water to quickly flush it out. I do know how he feels after taking the drug, we all do. But it is realy important to be able to drink and pee a lot after taking it. As to orednzone I think that you mean prednisone (a steroid) that is given with cytoxin. This you can split and take in dwo doses in morning and in the evening. However, please always check with your doctor before you adjust any medicine in any way.

[elephant]

Welcome Terri, sorry you and your husband are going through the WG stuff. Love to hear your husband's story.

[Sangye]

Hi Terrilyn, glad you found our group. Your husband is lucky to have you searching for info and support!

I agree with Jolanta about the cytoxan (ctx). His docs should have explained all that-- it's routine with ctx. (If your doc didn't, you might want to give him/her an earful)

You can split the pred morning and night, but taking it all in the morning helps mitigate the insomnia it causes.

Do you have a Wegs specialist? That's a rheumatologist who specializes in Wegener's. They treat hundreds of Weggies. A regular rheumy is not sufficient with this disease. Most have never seen Wegs or have only treated a handful of cases. Wegs is highly variable and sneaky, so you need someone with vast experience. If you don't have a Wegs doc, let us know and we'll help you find one. Where are you located?

[Lightwarrior]

Welcome Terrilyn18. I agree with Jolanta and Sangye's' advice. I find that i get tired in the morning but I wonder if it is because I do more early morning, i.e. shower, get dressed for work?? I'm also tired in the afternoon so it could be the cytoxan. How much cytoxan and prednisone does your husband take?

[terrilyn18]

I was told about drinking lots of water to avoid bladder cancer. I guess I forgot. So thank you. I did mean prednisone . I try to go to fast. Here is Joe's story. In November 2009-I was making dinner. My husband joe was taking a nap in his easy chair. I called him for dinner. When he got up he started to cough and it was alot of blood. Thinking it was from his sinus, he blew his nose and started to eat dinner. Not long into it I said lets go to med express see what is going on. We did and they sent us to the ER. It was about 24 hours when they decided it was pneumonia. Five days in the hospital. They cleaned the lung he was fine everything healed we went home. He felt good for about a week. Two weeks later we started going to our PC. Telling her he just didn't feel well. In mid Dec. she took a blood test. We went home. By the time we got home there was amessage on the machine. "Go to the hospital right away. Joe is in kidney failure." We went back to the ER. All sort s of specialist came and went. Finally Dr. Ottonello came in. We had meet him several years ago. He said I don't like what I'm seeing. We are going to do a kidney biopsy. They did and it came back Wegeners. They sent the biopsy to a different hospital and blood work to the Mayo clinic. Dr. said we would be treating this very agressively and he was incharge. After 10 days in the hospital he came home on our grandsons 21 birthday. We missed the party. Joe was on 125 mg of cytoxun and 80 mg of prednisone. He didn't even know what day it was. The second week in jan. Dr. Ottonello was rushed to the hospital and was in intesivecare. His nurse was trying to talk to him about his peop;e but they would not let her. I called and asked if we could cut back the prednisone because of what I read on the internet. We cut it back to 60 and in four days she said cut it again to 40. Well to late. It did it's damage. He was bleeding internally and we did not know it. Jan 25 at 5 am he got up to go to the bathroom and yelled help me I'm going to fall. He started to convulse. I called 911. For 10 hours they did not know if he would make it. His count was 4. They gave him 2 units of blood in ER then moved him to intensivecare. He received 4 more units. After five days in ICU he was given aroom and it was another 5 days to come home. The doctor that took over the case is Dr. Gorantla. She is not as old as Dr. Ottonello. The nurse told me he would be back hopfully sometime in May. Dr. Gorantla said she would continue to treat him or he could go back to Dr. Ottonello. I don't know if he is back yet. Joe said he would stay with her. She seems to know alot about the Wegeners. But we have talked about going to the Cleveland clinis. We are in the prosess of getting 37 years of stuff out of our home. We decided to sell and just rent. If we have to move near one of the four sites we will do so. Most of the doctors in the hospital have only seen 3 or 4 cases. I never thought to ask how many Dr. Gorantla has treated. She is very precise on the blood work and calls me herself with results and changes in his meds. We also have the renal and heart Docs. Joe has had an arthmia for years. They just did a peacemaker in March. This has been an eye opening on going thing for us both. We have been married for almost 46 years. Joe is 64,I am 63. It is true you become one. He is now on 75 mgs of cytoxun and 15 prednisone. We are cutting back on the prednisone for the next three weeks to 10. He was taken of the cytoxun for 10 days because his white count was 1. It is back to normal. The Kidney doc has him on procrit once aweek for the red count. I have been reading everyones messages. It helps to hear others and there opinions. Taking the meds at night was just athought we had. Thanks for the reminder of why that is not a good idea. Sorry this is so long. Thanks for listening.

[elephant]

Thanks for sharing your story. Yes I highly recommend going to a Wegeners specialist! I go to the Cleveland clinic and I am from South Carolina. Again you will get alot of support of this forum.

[Sangye]

Terrilyn, it really helped to hear your husband's story. Go to the nearest Vasculitis center for care. They're all wonderful and you won't regret it. He already has an odd complication-- internal bleeding-- and you really need docs who know Wegs. You're wise to consider moving closer to a center if necessary. I live 1.5 hrs from JHU and am very happy to be so close.

[jola57]

I agree with Sangye, the internal bleeding is out of place. Have they found from where? Getting to a specialsit if you can is a must (as everyone will nag you). Thank you for sharing your story and I am sure you will see many happy returns of your anniversary. You are brave to keep it all together for your husband, he is very lucky.