Cytoxan

I've never heard of cytoxan, is it a new med? Is it a TNF inhibitor? I hope it works for you, often they have very slow build ups in your system, some take months to fully work. How long have you been on it?
Let us know. golitho

Cytoxan is mainly used for cancer treatments. My rheumy is using it off label. I was diagnosed with JRA while in grade school. Started out with MTX injections cause my stomach couldn't handle the pills. As I grew up we switched to the pills and added the other mainline meds. I was my drs first patient on Enbrel. From there I went up the ladder-Humira, Remicade, Orencia, Rituxan, Actemra, and now Cytoxan.

My local drs referred me down to Duke a few years ago. I was having difficulty breathing and a CT showed Interstical Lung disease or RA lung. I've been admitted numerous times for pleurisy and pericarditis. A few yrs ago both TMJs were replaced. My body was trying to heal the damaged joints so quickly, the bones were fusing together. Last year I started having major gi issues and a feeding tube was placed. I also have uveitis. Whew-fun times :)

Concern is that the Cytoxan is not working. Lungs are super tight and joints are swollen. Not sure where we can go from here. At my old RD's office I was the oddball. Everyone my dr sees at Duke is an oddball. I firmly believe I'm at the best treatment center for me, but it's scary that things are still going down hill.

Amy-I started the pills in April and took them for 2 months. I spent the month of April inpatient at home and Duke wanted to give the Cytoxan a try. Since my local drs don't follow that protocal, they only prescribed pills. I started the infusions July. I just received one today. I'm not sure how long my dr wants to try. He wanted 6 straight months but we've had a few breaks here and there due to surgeries. I actually see him in March, but he'll email me within the next few days to see how things are going. I'm just scared that there is not much else out there. He mentioned the new med that was just approved, but he wants to see data on how it improves lung function. Cytoxan is often used to increase lung function. That's why we had such high hopes. I'm thinking hope is no longer that high:(

Amy-how long did it take to see improvement?

Thanks for the reply.

My dose on Mon was 1800mg. I'll get bloodwork down in 2 weeks to check counts. So far the only effects I see are major hair loss and early menopause. Joy. Hair is almost totally gone. Wearing hats now. With the feeding tube I look like a cancer patient.

I know that it's not commonly used is JRA/RA treatment, but I was hoping to find someone else. Is it commonly used in Lupus treatment? My rheumy definitely feels there is another disease causing my decline. Lupus has come up a couple times since I have pretty severe organ damage.

Hopefully they'll be new meds-soon. Unfortunately I've already been on cyclosporine. Why can't anything ever be easy?

Yep. MTX was one of the first. I was lucky to have a very agressive rheumy as a kid.

How long did it take for you hair to grow back? Cytoxan has also caused early menopause. So glad my mom and I have that in common :( Did that happen to you as well? Did you return to having periods after you stopped the med?

Sorry for the 20 questions. I just haven't found anyone else who has used this med.

Thanks Amy.

How long did it take from an infusion for you to feel any effects? I know it takes about 2 weeks for my blood counts to take a hit. I'm feeling super rough right now and I keep hoping the infusion from Monday is going to kick in. Chest is super tight and eyes are a mess :(

My rheumy and I email and text since I'm close to 3hrs away. I don't want to bug him unless it looks like the Cytoxan should have kicked in.

I also get infusions of IVIG as well. Have you used this med?

My ANA was positive when I was a kid, but has tested negative ever since. I'm thinking it's because I'm in treatment. Rheumy isn't too concerned since the treatment wouldn't change. He is thinking of genetic testing to see if there is another illness/condition. Again, he feels treatment wouldn't really change, but it might make it easier to get insurance approval from some meds. I've been on disability for 2yrs since the TMJ replacements. I used to teach biology but I can't talk for more than an hour without slurring my words. Muscles just don't work the way I want them to. The other organ involvement throws me in the hospital pretty frequently. I was inpatient close to 16 weeks last year. I was eligible for Medicare in Dec. since I'd been on disability for 2yrs. Prior to that I was paying close to $700 monthly for insurance coverage through my county school system. Medicare would have been close to $100 monthly, but so many restrictions. I go to PT 2x weekly for the jaw. This has been for 2yrs and there is no end in sight. Medicare has a cap of around $2000 for PT for the year. I'd meet the cap in a month. Plus, Medicare woun't cover the Cytoxan or IVIG for my medical mess. So-still paying a fortune for coverage through the county. With the Lupus diagnosis, is the Cytoxan covered? I really have no interest undergoing more tests, but if it will save me money insurance-wise, I'd do it. Rhpus(ra+lupus), CREST, and mitochondrial disorders have been tossed around. All drs agree with the JRA since jaw involvement is one of it's hallmarks. The severe organ involvment is unusual.

Thanks again for taking the time to read and answer my million questions. I'm just excited to find someone else with a similar treatment plan.