My husband is on his second dose of Cytoxan for Wegeners. He is still experiencing severe pressure headaches. Has anyone beennonnCutoxan infusions? If so, how long before you have had some relief?
Hi Jamie
I too have WG and got given Cytoxan in the very early days (2004) I couldn't tolerate it. Nausea, headache,etc. Switched to Mycophenalate which was not a problem. Is your guy on steroids?
Cheers
Dave
Yes. 15mg of prednisone per day. He started at 60mg but they started to taper when they switched from methotrexate to Cytoxan.
OK,
Guess you are in the UK? Are you anywhere near Cambridge? Addenbrookes have a Vasculitis clinic run by one of the top docs in the world as far as WG is concerned.
Do hope you can both get through things - I got diagnosed in 1999 and have had some tough times - but still here.
Good luck
Dave
In june 2009,when I was diagnosed with Wegener's, I was put on 3 Cytoxen tablets and 80 mg of predsizone. It took a month before I got down were I had to have help to do anything. I started my treatment in July 09. My doctor started reducing my dosage in October 2009. My Predisone was gradully reduced too. I don't think I can help you, but I did get some of my strengh back. But I call the disease "the don't feel good disease". I don't never feel good and I did not ever feel good before I was diagnosed.God bless you both and I hope your husband gets to felling better.
I was on cytoxan in 2009, but I was on a pill. I took three a day in the morning, I had to wait for 1 hour and then I eat a big breakfast to move it through my body. I started gradully getting off the pill in October and ended my treatment in December. I was also on a treatment of 80mg of Predesone during this time but I was gradully weaned off it after six months.I got down like an invalid during this time but gradully got my strength back. Then I took 5mg of predisone until I could'nt take it anymore. I'm glad I had good insurance during this period. I am now on Medicare and can't afford these tretments. I have got down again and they can't figure out if it's my heart, my lungs, my sinunes or my brain. But I have lived 8 years.so that's something to be thankful for .I thank the doctor's that I do see, think my problems are old age, because I am 69 years old. I do hope he does better and can stand this treatment.
If no results after 3 months, then its time for a change.