Cytoxan

[JanW]

Why isn't insurance going to pay? If I were you I'd get on the phone with them myself and understand the reasons. What medication are they suggesting that your doctor put you on? Do NOT start to pay out of pocket unless absolutely necessary -- insurance companies can come up with all kinds of excuses if you start to pay and then want to switch to them paying.

If they are saying that you need to take in it oral form and you can't for whatever reason, see if you doc an appeal this for you. Sometimes docs don't fight so hard (because it's you paying out of pocket and not him having to worry about being reimbursed).

I've had to fight the insurance company more since WG than ever (was never sick before), and I haven't lost yet! Remember too that there is no such thing as an approved drug for WG -- so if they tell you that the drugs aren't approved for WG, that's also a lame excuse.

[LisaMarie]

on the phone with both now amazing how i can multi task with a phone in both ears,,,,,,getting the run around from Aetna....then will call blue cross blue shield....the doctor office will set up the infusion and even though i do not want to pay out of pocket ...i can not afford to wait for this to get cleared up...ughh my sridor is slightly increased and occassional voice changes ...if it does not stablized I will have to go back to the otolarygnologist to have my trach fixed again.....thanks for the milk dud ....even imaginary ones are helping me .....i just wanna throw something...must be that italian gene coming out in me....wish me luck.....God grant me patience

[Jack]

I know that treating with pred only definitely doesn't work -- and that's been proven, but I wasn't aware that the reverse (treating with only chemo doesn't work) was also true.

There was a move away from steroids to chemo drugs in the 60s but the results were very poor. It was only when they combined the treatments by using both Pred and Ctx in the 70s that they saw a dramatic improvement in outcome. However, in the early days 40% died from drug side effects!

[janNaz]

Thank you for your replies. I will definitely press my Rheumy on this. Unfortunately, I don't have a WG specialist...yet...I am in the process of looking for one tho. I'm in AZ - so far from all the WG experts it seems.

Also, I take ctx in the evening with dinner, per instructions of pharmacist. I have a call into my Rheumy right now about changing that to morning. Certainly don't want it sitting in my bladder through the night.

Thanks again. Have a wonderful day.

[Sean48]

I am starting cytoxan today and one of the things my doctor told me was to drink lots of water to help the bladder.

[Jack]

I think we all tend to skirt around the unpleasant fact that Cyclophosphamide (Cytoxan) along with the other Chemo drugs can not only cure cancer, but can cause it as well. After doing its work, the drug is mainly excreted in the urine and will damage the bladder on its way out. This cell damage may result in a cancer that will only show itself many years later, but the risk can be minimised by keeping the dose down, diluting the excreted solution and minimising its residence time in the bladder. Occurrence of bladder cancer in Wegener's patients is around 15% after 15 years. Or, to look on the bright side - 85% don't suffer from it. There are also other bladder related side effects so any abnormal observations should be reported to your specialist.

[drz]

Hi all.

I've been on cytoxan and pred since March 11, 2010 (a little over 4 mos). I met with Rheumy today and asked about alternative to ctx. She informed that dosages of my meds (currently 175mg ctx and 25mg pred) will remain the same for now until reevaluated in 3 weeks, and that the plan is to continue with cxt (tapering along the way) for a year. Now my major concern: I thought that I read somewhere on this forum that ctx should not be taken more than 6 mos because of long term side effects. Maybe I misinterpreted? Does anyone have any info to share on this? Thanks much!

My rheumatologist says he wants to limit my time on Cytoxan to a few months of having control of WG disease before he switches to something less toxic but keep it under year for sure. I gather side effects are serous and taking longer can be dangerous to your long term health. your treatment plan sounds reasonable and should be based on your lab results, symptoms, history, and treatment needs. The experience and skill of your presecribing physician is most important factor in getting right treatment plan for you. We have to have faith and trust in them and give them all relevant info about our symptoms so they can adjust and tweak our treatment plan to keep up with changes in our WG.

[jody]

hi, jack and all i havent been here in a long time.been pretty sick all most died in dec.09 ovarien cancer.had to have a filter put in, blood clots got in my lungs. lots of other stuff but thanks to god im here.had 6 rounds of chemo.but im going into the study.not sure what i will get. i did feel some better with the wg, when i was on chemo.i still take fragmin for blood clots. i just wish they would take me more seriously about my wg.....jody

[drz]

Thank you for your replies. I will definitely press my Rheumy on this. Unfortunately, I don't have a WG specialist...yet...I am in the process of looking for one tho. I'm in AZ - so far from all the WG experts it seems.

Also, I take ctx in the evening with dinner, per instructions of pharmacist. I have a call into my Rheumy right now about changing that to morning. Certainly don't want it sitting in my bladder through the night.

Thanks again. Have a wonderful day.

I have a friend going to Mayo inAZ and he is remission now from WG. I don't know if his physician bothers to register as a vaculitis expert but i would certainly guess the Mayo there has people experienced in treating vasculitis and they should have consultation available from their Rochester clinic too if needed. The large University hospital usually have good medical facilitiees where they are likely to treat esoteric disease like WG too.

[elephant]

Hi Jodi, welcome. So glad you survived ovarian cancer. Do you see a Rhuematologist that specializes in Wegeners disease? You sound like you have been thru so much? You really need to have a specialist that can over look your care. Thanks for posting.