Mesana

[ozterry]

Hi all, I was diagnosed in August this year. I have reduced from 50mg Prednisone and now down to 20mg. I am taking 150 mg Cyclophosphamide (Endoxan) plus Bactrim DS (160/800) Mon, Wed, and Friday. Now all of these I have read about on this Forum. However, I am also taking Mesna (uromitexan 600 mg) half a tablet (300 mg) daily. As far as I am aware, this is to protect my bladder from the cyclo. Does anyone else use this drug? It is very expensive and there does not seem and end in sight for stopping or reducing it. I have just been issued with three more months worth. I am sorry if this has all been asked before, but I am still struggling to come to terms with all this extra medication. I am also a diabetic (type 2) but taking insulin because of the prednisone. I am asthmatic, have hypertension and a stent inserted in an artery around my heart. I have osteoarthritis and have had a spinal fusion and a double hip replacement. Now I have swollen feet and legs and leaking fluid from my legs,and am taking lasics morning and evening to try and get rid of the excess fluid. It is all very uncomfortable and every day I tired and feel drained very quickly. Exercise, even walking can be tedious and difficult. I feel like I am a walking chemical factory, so I guess I am just asking for some explanations, possible time frames, other peoples personal experiences. If I have learnt nothing else from this forum is that we all experience Wegener's in different ways and different degrees. Is there a kindred spirit out there somewhere? I am also sorry that I have no idea how to tag this thread. (Sorry about the incorrect spelling of Mesna in the title) :)

[Pete]

Hi Terry,

I'm sorry you're having such severe problems. Hope that things start getting better soon.

I was on ctx for 16 months and was not given anything to counteract its side effects. All I was told was to keep well hydrated. I now have a monthly urinalysis to check kidney function. It can also pick up early indications of bladder cancer (one of ctx's side effects). So far, so good 2.5 years out from my last dose of ctx.

Good luck.

[renidrag]

I, too was on ctx for twelve months and have been off it for over four years, same here as far as hydrating. What with the pred keeping me up all hours, drinking water was not a problem. Free from that now only back on pred now for three and one half months. Started at five and down to 2 1/2 mgs. now. Still feel some pain, but livable. As does Pete, my bloods are done every three months to keep up to date. I do hope you start getting better, remember, someone is usually here to listen and help.
Dale

[annekat]

I also was on CTX for about a year, which I think was an unnecessarily long time to be on it, for me. I just kept well hydrated, as is always mentioned. Interesting to know about this new med which protects the bladder. Too bad it has to be expensive, but I'm glad you are able to get it. And I'm sorry about all the other things you are dealing with; bladder cancer would be the last thing you need on top of all that. And although I'm not taking any meds but the basics, currently MTX, Bactrim DS, and pred, I can sympathize about feeling like a walking chemical factory. I hope things get better soon!

[ozterry]

Thank you all, I really do appreciate the assistance this forum offers. My rheumatologist did a lot of arguing with Westmead hospital and instead of paying $200 for the Mesna, he went through the cancer care pharmacy and I got three months supply at $6 per month instead. It took about an hour for him to organise, but he is one determined specialist. The rest of my medicines are covered by the PBS system and only cost $6 a script, but when you are taking 18-20 tablets a day, it still runs expensive for an aged pensioner. However my blood count is good, and kidneys and bladder are OK, so apart from the usual side effects, the medications are doing their job.

[me2]

I think it is great that you are using the Mesna. What a great doctor you have.
I took Cytoxan orally for almost two years until my bladder began bleeding. Fortunately I had remission at that point. Mesna was not available.
15 years ago I tried taking Cytoxan again (after a 20 year remission) and had EXTREME bladder pain. The oral Cytoxan was stopped and later it was decided to put me on IV Cytoxan so that I could get Mesna along with it. I was very, very skeptical because the pain I had experienced was soooo bad. I couldn't believe that Mesna would protect me from that.

So , I researched it and also talked to nurses that I knew in the infusion clinic. They always tell me the truth. All of them said they had only seen good results using Mesna. I was of course concerned because I was in such pain at 150 mg and NOW they wanted to dose me with 1000mg. I was scared it wouldn't work and I would be in agony again.

Well, I can report that I had ZERO pain. That is how effective Mesna is at protecting the bladder. I think if it were not for the expense everyone taking Cytoxan would use Mesna.

I also looked into natural herbs and substances that would have the same protective properties as Mesna so that I could take these things in between Cytoxan infusions- knowing that Cytoxan has a half life and isn't just suddenly gone from my system in a couple of days. I've shared the studies I found on the herbs that are thought to be protective but no one here seemed interested. I guess most people aren't as scared of the effects of Cytoxan as I am.

[ozterry]

Hi Me2,

Thank you very much for that. So far bladder and kidneys are clear. I am taking Mesna orally at 300 mg daily (now into my fourth month) and Endoxan (the same) at 150 mg daily. You have helped very much to ease my concerns. Since I don't see the specialist until late January, dosage isn't going to change in a hurry. I would be interested in the information you found on the herbs, if you still have it? Yes, I am lucky to have a good group of specialists but particularly my Rheumatologist, he is very thorough and helpful (and he lets me have three stubbies of beer twice a week). Taking Cyclophosphamide scared the hell out of me and still does. However as my specialist regularly reminds me, he is trying to keep me alive not kill me.

Terry

[me2]

Yes, the good news is that Cytoxan is very effective. We eat some foods just for pleasure that carry some risks- why not take some drugs to stay alive that carry some risk?
I found a discussion that I had with Sangye and Elephant on this web site 4 years ago. Use the search function above and paste in "Cytoxan and Mesna and some other things that might help (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/1053-cytoxan-mesna-some-other-things-might-help.html)
I mention some of the things I found but I do have more on my other computer I think. You can look them up on Pubmed and get a little information but I went to the University in Seattle where they let me copy the full studies. I think I have them on my other computer.
If you would like them just send me a message on this forum with your email address and I will send them to you.

They are too long to post here.

I do think the Mesna is extremely effective but what I would think about is when you quit the Endoxan that they might stop the Mesna. I think this would be a good place to try the natural things. I remember Taurine and Berberine as being a couple of things and I know these can be obtained as supplements or be found in certain foods.

Since you are on your fourth month of Edoxan does that mean you are close to switching to a maintenance drug? I know it is no longer standard protocol to park someone on Edoxan for two years like happened to me.

Not that I am complaining. Cytoxan saved my life.

[ozterry]

I had a quick look at the link, thank you. I will peruse it more later. When I was living in China, I spent nearly three of my seven odd years in Fujian Province, the home of Oolong tea, and a further couple of years near Hangzhou in Zhejisng Province which is home to Dragonwell green tea. Although I can still get plenty of Oolong from Chinese friends, over the last couple of years I have drifted more towards coffee. Of course my Chinese friends have always lectured me on the health benefits of these teas, so perhaps it is time to lessen coffee and increase my tea consumption to see the effects.

As to switching to a maintenance drug, there has been no mention of change and I won't return to the specialist until the end of January, so I will ask then. However since I have been given repeat scripts, I don't see it happening anytime soon. Very glad now that he persisted in finding me Mesna at an affordable price.

PM'd you my email address

Terry