Cytoxan

[pberggren1]

Generally ctx is not taken for more than 6 months at a time. I would be concerned about this. I would press your Rheumy on this and ask for a consult with a Wegs specialist or go see a Wegs specialist yourself. You should probably be going on to a maintenance drug like Cellcept or Imuran.

[Jack]

There are no hard and fast rules, but the recommendation for Cytoxan is for 6 months maximum in any one treatment unless there are very good reasons to continue. This is because the risk of serious side effects is cumulative and you may need to resort to using the drug again in future. You can easily use up your lifetime "safe" dose as I have now done.

[DEE]

ive been tsaking cxt for nearly ten months and as Jack says the reason is its the only drug that they have found that keeps mean stable ,hoping to change end aug ! they have to make a decision for the reason of i may need it again at some point They are thing of trying Imuran DEE x

[misskay]

my doc (and rx label) both tell me to take it first thing in the morning and drink plenty of water to flush the system and keep the cytoxan from sitting in the bladder overnight.

[Jack]

Exactly right. Don't let the stuff sit in your bladder for any longer than it need be. That is where most of the bad side effects stem from.

[JanW]

A good rule of thumb with WG (or probably any disease really) is to take the smallest amount of meds/surgeries/procedures etc. to stop damage and start healing. So, for instance, I'm not on prednisone (and have not been) because my doc was willing to let the immunosuppressant handle my inflammation, even though it took a few months. In the very short term I had more aches, pains, nasal issues, etc. but in the long term he believed (as did I) that my symptoms were tolerable and that steroids would do more damage (I already have osteoperosis). Also, although my stenosis is forming again, my surgeon will not operate until it impacts my quality of life--particularly since this is surgery that some Weggies have to have over and over (and each one causes it's own slight damage), you want to minimize the number of procedures. Your doctor may well think that you were sick enough that keeping you on ctx just a tad bit longer than necessary will give you greater 'insurance' against a relapse, but he may not be weighing the fact that you could need it again, or even the damage it might do in a very short period of time. Others are right -- the next drugs in the roster should/can be immuran, cellcept or methotrexate.

I think that the more familiar the doc is with this disease, the more they think about this and can really help all patients weigh the cost/benefit.

[Jack]

I'm not on prednisone (and have not been) because my doc was willing to let the immunosuppressant handle my inflammation

I think this is an indication of how variable both Wegener's and our reaction to drugs can be. Early attempts to treat the disease used only immuno-suppressants or steroids alone and were unsuccessful with a very high death rate. Treatment without Pred is not an option for most and I envy you for getting away without using it.

[JanW]

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. I thought (and my doctor's thinking) is that many docs who are unfamiliar with WG think that the tempo of the disease is largely the same across all populations -- that is, if you don't 'get on top of it' as quickly as possible, it will advance rather rapidly/drastically suddenly, possibly killing the patient (i.e. from dx to death in the 1970s was less than a year for instance -prior to the discovery of how immunosuppressants could be effective in fighting the disease).

Now, the thinking seems to be (at least for the specialists at Hospital for Special Surgery, anyway) that looking at the person clinically, as well as trying to ascertain how long they had been symptomatic (so in my case 5+ years with only inhaled steroids for what was wrongly dx as asthma), would yield clues as to the tempo of the disease. In five years, I really hadn't progressed past severe subglottic stenosis and a saddle nose. My c-ANCA was positive and my P3 was very high to be sure, as were my inflammatory markers, but I wasn't that 'sick' -- yet. So, he was willing to risk taking his time getting the inflammation under control. Of course, this meant frequent monitoring, and doesn't discount the fact that something may go seriously wrong at any time. However, this would be true if I were taking pred as well.

My two specialists haven't batted an eye at my not being on pred (eye and ENT) and in the case of my stenosis, one won't prevent the other anyway.

[LisaMarie]

ok everyone ...hide the milk duds...just got off the phone with the doc office...insurance will not pay for cytoxin iv and it is $130 approx per dose...so i have to pay out of pocket then try to get reembursed...ughh...was suppose to start infusions this week....now not sure when...or how often ...I could just scream.....damn where did I put those milk duds....It is hard enough having WG without all the drama of the insurance...wish me luck in remaining calm and collective when i call the insurance companies....thanks for letting me vent

[misskay]

I'd have my doc on the phone with the insurance company asap... have him/her explain the medical neccessity of the drug and what could happen if it isn't administered NOW. Best to you, keep us posted. *hands LisaMarie anothe milk dud*