Cytox and Mesna

[Thakator]

Hi,
Having read all of the threads relating to medications and nearly all of the rest in the forum, I find but few references to the use of Mesna. One in particular mentioned that the poster had never heard of it being used in conjunction with oral cytox. This strikes my curious nerve - - how many of you take Mesna with your IV cyto? How many with your oral cyto? Can you tell a diference?
My rheumie put me on Mesna from the very first day of my taking the cyto - - said it is to counteract some of the negative aspects of it, especially on the bladder. Seems like a good idea to me, but I then found it odd to see so little mention of its use herein. I'm on 150mg oral cyto per day (lung involvement) to go with the pred (90mg/day) and the bactrim. Pretty standard mix until you then throw in the Mesna. She has me on an IV solution which I draw with a syringe, squirt into a sweet liquid such as Ginger Ale and then drink at the rate of 0.75mg/day. Tastes like___ but worth it if it works. Sound familiar to anyone? Any comments on the merits of this? I've not been on it long enough to provide any meaningful feedback but will as time goes on if this is of interst to either of you. Thanks, Ron

[Sangye]

I've never heard of mesna being given with oral ctx. I don't know why. It's standard to give it with IV ctx. I suppose because you're getting a more concentrated dose all at once.

Are you really on 90 mg pred a day? That is not standard at all. How long have you been on such a high dose?

[elephant]

Usually they start all WG patient with 60 mg of prednisone, this is what I was told.

[Sangye]

I think that's probably changing, Elephant. It really depends on how active the disease is and what kind of involvement. Someone with only sinus involvement probably doesn't need 60mg to get the inflammation down while the immunosuppressant works.

Even in 2009 when my lungs hemorrhaged and I was off pred, Dr Seo only wanted me on 20mg pred for one month while the ctx kicked in.

[me2]

Thakator how much does it cost per day for your Mesna?. When I get my Cytoxan infusion every two weeks (500 mg) in patient they give me a Mesna injection with my IV. Two hours later I take a half Mesna pill. Then , four hours after that I take the other half of the Mesna pill. The one pill costs $118 at the cheapest place I can find. My insurance pays for part but still it adds up. I have heard of people taking the liquid daily like you but I have never heard how much it costs per day.

As to your other question about whether it works. Well, let me tell you. Thirty years ago I took Cytoxan daily 150 mg for almost two years before developing hemoraghic cystitis (sp?) - bleeding in my bladder. I quit the Cytoxan and fortunatly had remission at that time.
Twenty years later I tried taking 50 mg of Cytoxan and within two days I was in AGONY with bladder pain.

When I began my IV Cytoxan I was terrified that the Mesna wouldn't work well and 500 mg of Cytoxan might cause me severe pain again. I talked to Dr's, I talked to nurses in the infusion clinic and they all assured me that the Mesna worked well. Just in case they gave me a bottle of oxycodone. Well, the Mesna works so well that in several months of treatment I have never had ANY bladder pain. A miracle in my book.

In another thread about Cytoxan I also shared some research I did on natural supplements that have been found to protect the bladder from Cytoxan in rat studies. I use these supplements just in case they do help- they are innocuous.

I think it is great you are taking Mesna. I have not heard of a down side- other than the expense.

[Thakator]

Sangye, by the standard mix, I mean the combo of pred/bactrim/cyto. Also realize that the customary dose of start up pred is 60. Which is what I was on until having a major flare with pulmonary hemorrhaging and the sudden formation of those nicely-titled ground glass infiltrates of the lungs - - things you've likely experienced with your lung involvement. Since I had only been in treatment mode for a month, they decided to up the pred for the time being to give some extra protection while waiting for the cyto to take over. Besides, at 6'3" and 202lbs. and the formula that I've seen referenced elsewhere of 1mg of pred/1kg of body weight (please remember, I'm still learning these ropes), that didn't strike me as being too outrageous. And double besides - - a man in agony will swallow the pills and think about it more in depth on another day! Only on the 90 for a week now (after being on way more than that during six days in the hospital) and doubt if it will last too long at that level. Please be assured that I will object if otherwise is suggested. And, my dear weggie guru, you may feel free to keep me on your nag list.
Me2, thank you for your comments. I had read with great interst your previous posting on the subject and am glad to now read your reponse to this one; relieved even. Don't know the cost, will try to find out and let you know.

[elephant]

Sangye, it is good to know that re: prednisone. Thanks!

[Sangye]

Thakator, it sounds way too high. If a Wegs specialist did it I wouldn't question it. But even with lungs completely full of blood at dx, my docs did 3 days of pulse steroids (1,000mg IV solumedrol) and then dropped it down to 60 mg. I only stayed at 60 for a couple weeks. It's an incredibly high dose and unsafe to remain at it for long.

I weigh much more than you (how embarrassing is that---*@&%# pred) and Dr Seo still would never use such high doses on me.

Can you get a VF doc to consult with your doc?

[Thakator]

Me2 - - checked with my pharmacist; a month's supply of Mesna (daily doseage of 0.75ml) in this injectable format costs only $120 even if an insurance company wouldn't cover it. Mine does so I'm lucky. Fortunate also that my rheumie is sharp enough to have got me on it and to have done it in this way. Again, thank you so much for the positive feedback regarding its effectiveness. Also, taking it with something sweet kills the taste of it if you don't exhale for a few seconds after downing it.

I've no idea why this extra step of precaution is so unheard of given how many of us are on oral cytox and how good its reputation seems to be (perhaps Sangye's DR Seo will render his opinion to her on the matter). Either way, this appears to be another question that many of our forum members might wish to raise during their next Dr. visit. Hope that this proves to be helpful to at least one of you (my whole point for bringing the subject to light herein). And, Sangye, I shall get me some more answers on the 90mg pred issue. As always, my sincere appreciation for your looking out for us in these issues - - you have this calling to go with your others, so please don't let up.

[Sangye]

Thanks!

If anyone has an upcoming appt with a Wegs specialist, please ask about the mesna and oral ctx thing. There must be a good reason, especially since it's so inexpensive.