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Thakator
01-17-2011, 12:12 PM
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
01-17-2011, 01:01 PM
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
01-17-2011, 01:05 PM
Usually they start all WG patient with 60 mg of prednisone, this is what I was told.

Sangye
01-17-2011, 01:13 PM
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
01-17-2011, 02:07 PM
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
01-17-2011, 04:24 PM
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
01-17-2011, 10:45 PM
Sangye, it is good to know that re: prednisone. Thanks!

Sangye
01-18-2011, 02:56 AM
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
01-18-2011, 07:11 AM
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
01-18-2011, 08:02 AM
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.

Sangye
01-18-2011, 08:19 AM
A quick Google search of "oral ctx and mesna" got me this brief article from May 2010 on the use of mesna with IV ctx and oral ctx.
http://www.medscape.com/viewarticle/721688

It seems that the cost is prohibitive for daily use. A typical dose of oral ctx is 150mg. Using info from the article, mesna is $100 for 100 mg and is dosed at 40% of the ctx dose. It would cost $60 per day or $1800 per month.

I thought it was interesting that the article said neither mesna for IV ctx nor hydration (drinking tons of water) for oral ctx have much evidence to support their use. Amazing, since ctx has been used for decades. :glare:

Thakator
01-18-2011, 10:38 AM
Hi Sangye,
Thanks for the cite, I'm going to keep it for future reference. Please note though that it speaks of Mesna in terms of mg (pill form). And that would equate to a daily cost in excess of $100 for someone such as me on 150mg of oral cyto per day. However, the article does not mention the use of the injectable solution - - at least it doesn't refer to using mls at home and makes no mention of the suggested ratio of ml to mg of cyto (wish that it did). So, perhaps one is an apple and one is an orange. I don't know; I simply know that I take it in milliliters and not in milligrams. Whether I am taking enough is another question which is why I wish the article disussed this aspect of it (sounds like more research for me). Either way, I do know that the liquid route is not cost prohibitive at the level for which I have been prescribed. Maybe that's why my rheumie did it this way; looking out for the patient, you know.

Sangye
01-18-2011, 11:02 AM
Yeah, we really need more info.

Thakator
01-18-2011, 02:45 PM
Okay, I've done some searching and some math; also studied the spec sheet that came with my Rx. Since we are talking mgs and mls here, the critical number is the manufacturer's ratio of mg Mesna per ml of injecftable (ie: drinkable fluid). Turns out that the formulation I use gives me nearly 75 mg of the stuff per day. At your article's mentioned ratio of 40%, this means I would need 60 mg since I am doing 150mg of the cyto - - - so, looks like I'm actually getting very nearly a full 50% ratio of Mesna to cyto as far as the mgs are concerned. At the aforementioned price.
Pills=expensive; liquid, not so much. Don't know what else I can say regarding this. Sure would like to know why other docs aren't recommending it but sure am glad that mine is and that she has figured out how to make it a practical Rx for the patient. I can't find any particularly bad side effects listed for it (especially considering what we are used to with our other meds) and I've only found positive comments regarding it's success rates, especially as regards the hemorrhagic cystitis. Have found nothing to indicate that drinking it versus shooting it would make any difference.

Sangye
01-19-2011, 01:13 AM
Very good info, Thakator! I think the price thing is similar to mtx? I think someone recently said mtx injections are way less expensive than the pills. I was on injections very briefly and they only cost about $20 a month.

me2
01-19-2011, 03:26 AM
Good home work Thakator. Thank you. I was under the weather a bit and tried to find some info but didn't. This is just like school, if I wait long enough someone else will finish the homework before me.
I will definately ask my doc and pharmacist about doing liquid instead of pill.

Thakator
01-19-2011, 05:18 AM
You're quite welcome, M, hope that it works out well for you and any other of our brother/sister weggies who raise the subject with their docs - - we've enough to contend with as it is and don't need to destroy our bladders along the way. Take care, Ron

dunkie2202
01-19-2011, 11:00 AM
Hey Ron, I was put on the IV solution from the start of dx. Cytoxin & Mesna each in a 500ml bag, once a mth for six mths. My pred was at a max of 75 mg but now down to 10mg daily.
Just finished the last dose of Cytoxin and will be going onto Imuran tablets 150mg daily as at 5th Feb. Never had any bladder problems with it as I always drank heaps of water.
My hair is still falling out and I was sick for the first three days after each treatment but other wise feeling well.

me2
01-21-2011, 04:49 AM
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.

I am trying to figure this out still. Ron, you take 0.75ml daily. This would be 22.5 ml per month. You say your pharmacy charges $120 for that amount. I called my pharmacy and they said it would cost me $60 for 4ml (400mg). By my math you pay $5.33 per ml and my pharmacy is asking $15 per ml . This IS way cheaper than what they have been charging me for the 400 mg pill but still three times what you are apparently paying. Could you check my math and with your pharmacy to see if I have described things correctly?

I wonder why they have been letting me buy the pill for $118 when I could have gotten the liquid for $60? Why hasn't the liquid become common practice and put the pill out of business? (convenience?) I will be digging deeper on this. Thanks for the help. Already I'm going to save some money.

Thakator
01-21-2011, 08:01 AM
Hi Dunkie - - Glad to hear that you are feeling better, but sorry about the hair loss.
Seems like Mesna is used commonly enough with the IV cyto but not with the daily oral. I'd still like to know why; I halfway expect someone to come on here and say their doc says it's harmful to drink. Yet, I've found no such indication in my ressearch (perhaps they don't think there'd be anybody silly enough to drink it). Or sharp enough - - as in my rheumie - - to think about it. Don't know, but until otherwise contraindicated, I'm going to keep at it.

Hi me2 - - I've rechecked my math, my Rx's formulation and my costs. They are as stated before; I am getting 75mg of the Mesna itself per 0.75 ml of the solution. $120/month if the insurance didn't cover, but it does and we didn't have to do any persuading. Your figures are correct about the total mls/month I take. I can only attribute the 3x cost for yours versus mine to either or both of the pricing structures of your pharmacist or its supplier. Too bad, for sure - - but much better than that old $118/pill business. And, you only get one guess as to why someone making a profit off of your need to medicate may not have voluntarily pointed this out to you in the past.
Even so, why haven't the docs? Could it simply be that they are creatures of habit like most of us and so they keep prescibing what they have in the past? Could it be that the idea is simply too new to have made the rounds? Don't know but it sure does strike me as odd that I appear to be the only one on here who's gone this route with the oral cyto. Will let you know if my stomache decides to blow up or something else odd happens as a consequence - - of course, given the fact that I am nowhere near remission from the old Wegs, who'd know the difference. I mean, what with all the other blow ups and oddities that one encounters along this route. So very glad to have made a suggestion that may prove to have been of help to you. Take care, Ron

me2
01-21-2011, 02:21 PM
Hi Ron, I think you are ok with doing what you are doing. I literally spent over two hours on the phone calling pharmacies and hospitals about this issue. Most of them are completely unfamiliar with the oral liquid use of Mesna. I finally did find a pharmacist at the University hospital in Seattle where I get infusions who was familiar with the use of oral liquid. She did confirm that it was the injectable drug being given in oral form. She said they used it that way on people who were in the hospital and mixed it in with a drink- as you are familiar with. She did not know details beyond that and suggested I talk to the infusion pharmacist. I have been getting infusions there for months and didn't even know they HAD an infusion pharmacist. I now have someone to talk to when I go for my next infusion.

I tried to talk to the infusion clinic on the phone and they wouldn't even answer any questions. They kept telling me to talk to my doctor. Well, that doesn't help me because he doesn't know anything and is impossible to get ahold of. I left a message and never heard back- as usual.
I will be getting a NEW doctor soon and I look forward to getting better treatment- we shall see.
Still, calling LOTS of pharmacies I didn't find any that were nearly as cheap as what you are getting. Are you getting the 10ml vials of the injectable Mesna about every twelve days or whatever the math is? They told me it doesn't last long in that form- but once again were not real familiar with someone using it at home.
Is this a home town pharmacy you are using or one that is associated with a big chain or a University? I don't need a name but just an idea of the type they are.
I too found no contra indications to using it the way you are except that it needs to be diluted in a drink. I heard of someone quite some time ago taking oral liquid in drink daily and hadn't heard of it again until you. Thanks again for going over the numbers again. I am going to stick to this problem until I've left no pharmacist unturned. Take care, Kirk

Thakator
01-21-2011, 03:27 PM
Hi Kirk,
Too bad about your docs' unavailability. I'm lucky on that point as well, mine gave me her e-mail address right off the bat and has never failed to mail me back with full answers to my questions on the very day that I send her a note. I don't abuse the availability but I sure do use it often enough.
My pharmacy is an independent, small town one and that's probably why they are cheaper - - first name basis between myself and each pharmacist, very nice. I do get the 10ml vials, have read all the fine print in the blup that comes with the stuff from the manufacturer (APP Pharmaceuticals) and there's no mention of a shelf life, doesn't have to be refrigerated. Good hunting, Ron

me2
01-21-2011, 04:11 PM
Thanks for the all info Ron. I'll let ya know here what I eventually find out. Man you have a great thing going with your doc and your pharmacist. It really helps for me to hear the kind of care others are getting like yourself so I can tell my new doc what I expect. Maybe me and my WG should move to Kentucky. ha I passed through your state once and I thought it was gorgeous. Thanks again. Kirk

Thakator
01-22-2011, 01:09 AM
Kirk, Again, you are very welcome. Makes me feel good to give back even just a little for all the help I've gotten from this site.
If you ever find youself out and about and near this here land of the blueish grass, please let me know and I'll provide a guest house in the woods and a personal greeting from a fellow weggie. You take care in the intereim. Ron
Ps - - my doc is not only sharp enough to have come up with the cyto/Mesna routine, considerate enough to permit timely e-mail contact, personally involved enough to call me directly fairly often (she calls, not a nurse or a receptionist), familiar enough with wegs to have picked up on it during our very first visit, sttrong enough to have succesfully pushed for quick visits to any other specialist since getting me dxed, well-trained (Columbia), well versed and well-connected (CC); but, she's a downright cutie to boot! I know this won't get me off of Sangye's nag list, but not too bad for a Kentucky boy who finds himself in true need of a real doctor at this stage of his life. R

me2
01-22-2011, 01:20 AM
Its heart warming to know that someone is being taken good care of with this illness - and encouraging. I think you have presented enough evidence to get 'de-listed' by Sangye for perhaps a short period time. Just don't mess it up buddy!!! I'll yell at you myself if you get yourself
short-listed some how.

Sangye
01-22-2011, 03:08 PM
ROTFL... He's on my Nag Probation list. :laugh: