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Medical Forum / Diseases and Disorders / Arthritis / December 2005Cytoxan and Mesnex
Okay, so I've got an appointment to begin Cytoxan treatment for my RA on 9 December. Being the paranoid that I am, I check out the 'net for information. I get this warning: Do not take this drug if you have Rhuematoid Arthritis (of course it says talk to your doc first, but....). Then I look up Mesnex (also known as Mesna), and get a very similar warning. Sooooo, I'm thinking to myself, "Self, we are getting worried about this." Seems that Cytoxan is toxic to the bladder, which is why I'm infusing, rather taking orally or self injecting (that and I will be getting a higher dose). Then I'm told that I will be given Mesnex before AND after the infusion to protect the bladder. I'm wondering if anyone here is using Cytoxan and can give me a bit of insight. I know we are all different, but I'm curious. I'm not looking forward to the reduced appetite side-effect, though I suppose it's better than the nausea and vomiting one (maybe the appetite suppression is actually just a result of the nausea and vomiting?). If this doesn't work, then I get the "joy" of just going onto a maintenance "diet" of pain pills. Rituxan gave me systemic hives (that the RD thought/thinks might be vasculitis), Enbrel no longer works (since I've had to stop using it so often, it just quit working), Humira never worked, I'm allergic to Remicade (the best stuff I ever used), I'm allergic to Prednisone (but CAN take hydrocortisone without the headache, mood swings, weight gain, moon face, etc...), Arava worked somewhat as did Methotrexate, but apparently my body didn't like them (WBC below 2.2), the only thing I haven't tried was Kineret and the RD doesn't think that would work for me (oh and Abatacept probably won't either since I am not responding well to anti-TNFs anymore). Here's hoping that something in the "pipeline" works well if this doesn't. I will only be allowed to be on it for 12 months (the hospital would not even begin the process of registration until the doctor wrote them a note saying I would not be on it longer than 12 months!!!). I'm trying to be positive (no, not positive that it won't work, ya sillies), but I'm getting a bit depressed. I'm thinking that my "vision" of myself in full-time care because I cannot care for myself is getting closer, and I don't wanna (whine, whimper, cry). So, if anyone knows about Cytoxan and Mesnex, can you drop a line. The email works. Smokie Darling (Annie) I believe Cytoxin is a medicine that they use for "Wegener's" which is listed as one of the arthritis family. I have limited Wegener's but have not used it. Sincerely Lorrie F > Okay, so I've got an appointment to begin Cytoxan treatment for my RA > on 9 December. Being the paranoid that I am, I check out the 'net for [quoted text clipped - 45 lines] > > Smokie Darling (Annie) Hello, Annie.. As you have limited Wegener's granulomatosis (WG), I want to make sure that you're aware of the Wegener's Granulomatosis Association in Kansas City, MO. They have a web page at www.wgassociation.org where one can download a 150 page "patient packet" of information in Microsoft Word or Adobe Acrobat format. For a hard copy, contact the WGA at 1-800-277-9474 or wga@wgassociation.org "Limited" WG merely means the person doesn't yet have kidney involvement. It is no less potentially dangerous than WG with kidney involvement. Cytoxan used to treat WG (and some other autoimmune vasculitides), but in dosages much less than used to treat cancers. Even so, it has significant short and long term side effects which is why physicians try to avoid it or limit the cumulative amounts. It is likely to effect fertility although there are strategies that may preserve fertility in at least some cases. Some safer immunosuppressives used to treat WG (that may not be as effective) are ones you probably know about, Methotrexate, Cellcept, Imuran, etc. There's a wg-discussion email group at http://www.weareb.org/mailman/listinfo/wg-discussion with several hundred members. Suscription is free. Best wishe in you battle with WG and arthritis. -- Bruce (WG '97) > I believe Cytoxin is a medicine that they use for "Wegener's" which is > listed as one of the arthritis family. I have limited Wegener's but have [quoted text clipped - 51 lines] >> >>Smokie Darling (Annie) Hi Bruce,,,, I just wanted to thank you for posting here with such good,,,,to the point,,,, informative information. I hope that Annie puts it to good use with her doctor. Harv > Hello, Annie.. As you have limited Wegener's granulomatosis (WG), I want > to make sure that you're aware of the Wegener's Granulomatosis Association [quoted text clipped - 80 lines] >>> >>>Smokie Darling (Annie) Hi Bruce How are you? It was me Lorrie F who was answering Annies Message. I have limited Wegeners But Annie was asking about the cytoxan to be used in Rhuematoid Arthritis. I hope I clarified that and didn't make it more confusing. > Hello, Annie.. As you have limited Wegener's granulomatosis (WG), I > want to make sure that you're aware of the Wegener's Granulomatosis [quoted text clipped - 81 lines] > >> > >>Smokie Darling (Annie) > Hello, Annie.. As you have limited Wegener's granulomatosis (WG), I > want to make sure that you're aware of the Wegener's Granulomatosis > Association in Kansas City, MO. They have a web page at > www.wgassociation.org where one can download a 150 page "patient packet" > of information in Microsoft Word or Adobe Acrobat format. For a hard > copy, contact the WGA at 1-800-277-9474 or wga@wgassociation.org Um, no, I do not have Wegener's. I have RA, and I've gone through all the treatments aside from this one. Doc is a bit concerned that I *may* have vasculitis, but I don't see it as the hives disappeared after starting Hydrocortisone (and with vasculitis that would not have happened). > "Limited" WG merely means the person doesn't yet have kidney > involvement. It is no less potentially dangerous than WG with kidney [quoted text clipped - 18 lines] > -- > Bruce (WG '97) Thanks for all the info, that does help me make a more informed decision Smokie Darling (Annie) > Okay, so I've got an appointment to begin Cytoxan treatment for my RA > on 9 December. Being the paranoid that I am, I check out the 'net for [quoted text clipped - 14 lines] > I'm wondering if anyone here is using Cytoxan and can give me a bit of > insight. Cytoxan is a drug used in bone marrow trasnplantation to wipe out the bone marrow and immune cells. It was trialled as a treatment for aplastic anaemia. The results were okay, but the death rate was higher than expected, and it was discontinued. > I know we are all different, but I'm curious. I'm not > looking forward to the reduced appetite side-effect, though I suppose > it's better than the nausea and vomiting one (maybe the appetite > suppression is actually just a result of the nausea and vomiting?). Given what I've said above, what have they actually told you about this experimental treatment> Ari  Signaturespammage trappage: remove the underscores to reply I'm going to die rather sooner than I'd like. I tried to protect my neighbours from crime, and became the victim of it. Complications in hospital following this resulted in a serious illness. I now need a bone marrow transplant. Many people around the world are waiting for a marrow transplant, too. Please volunteer to be a marrow donor: http://www.abmdr.org.au/ http://www.marrow.org/ > > Okay, so I've got an appointment to begin Cytoxan treatment for my RA > > on 9 December. Being the paranoid that I am, I check out the 'net for [quoted text clipped - 27 lines] > Given what I've said above, what have they actually told you about this > experimental treatment> Well, considering that I have no other options left, that might have a chance of working, that's why we are going this route. I'll be "labbed" (blood draw) 10 to 12 days after each infusion (to check my WBC), and then evaluated after 90 days (by the RD). I know it's potentially very dangerous, but I believe the doctors are becoming worried about organ involvement now. So, die now, die in a year. Hmmm (not funny I know, but my DH wants me to try it as well, he says he isn't ready to lose me just yet). > Ari > [quoted text clipped - 8 lines] > http://www.abmdr.org.au/ > http://www.marrow.org/ >>>Okay, so I've got an appointment to begin Cytoxan treatment for my RA >>>on 9 December. Being the paranoid that I am, I check out the 'net for [quoted text clipped - 37 lines] > (not funny I know, but my DH wants me to try it as well, he says he > isn't ready to lose me just yet). I have heard about the odd case of attempting bone marrow transplant for those with severe, untreatable RA. Age and availability of family donors are factors in the decision to transplant. Ari Signaturespammage trappage: remove the underscores to reply I'm going to die rather sooner than I'd like. I tried to protect my neighbours from crime, and became the victim of it. Complications in hospital following this resulted in a serious illness. I now need a bone marrow transplant. Many people around the world are waiting for a marrow transplant, too. Please volunteer to be a marrow donor: http://www.abmdr.org.au/ http://www.marrow.org/ > >>>Okay, so I've got an appointment to begin Cytoxan treatment for my RA > >>>on 9 December. Being the paranoid that I am, I check out the 'net for <<snipped>> > >>Given what I've said above, what have they actually told you about this > >>experimental treatment> [quoted text clipped - 14 lines] > > Ari Odd that you should mention that. My second RD and I talked about it. He made the comment that it either works or the receiver dies (not sure if he was joking or not). We also discussed a treatment that is being done (on an experimental basis maybe?) in Britain (sometime after 2000 I heard about it). Apparently, there is a medical cure, but it causes cancer (not *might* cause it, it does cause it) in like 10 to 20 years. All the RDs have said that if it comes to that, they would interview my husband and any family members to make sure everyone knew and understood the ramifications. I'm hoping that it works, at least until something a little less toxic comes up that may help me (I *can* still hope apparently). I am scared, but trying to remain positive. You have been sooo informative, I really want to thank you for sharing your knowledge with me (and everyone else too!). I think that having any info is better than having none (less stress on the head, ya know?). SD (Annie) > -- > spammage trappage: remove the underscores to reply [quoted text clipped - 6 lines] > http://www.abmdr.org.au/ > http://www.marrow.org/ >>>>>Okay, so I've got an appointment to begin Cytoxan treatment for my RA >>>>>on 9 December. Being the paranoid that I am, I check out the 'net for [quoted text clipped - 23 lines] > He made the comment that it either works or the receiver dies (not sure > if he was joking or not). No joke. That's why I'm pushing as long as I can before going through it, especially considering my donor is not a perfect match (and even less so with the coming 12/12 matching standard for marrow). > We also discussed a treatment that is being done (on an experimental > basis maybe?) in Britain (sometime after 2000 I heard about it). [quoted text clipped - 3 lines] > family members to make sure everyone knew and understood the > ramifications. I haven't heard of this. > I'm hoping that it works, at least until something a little less toxic > comes up that may help me (I *can* still hope apparently). I am > scared, but trying to remain positive. Cytoxan is just about as toxic as you can get without going to chemo, if I'm understanding correctly. You'll not be getting the kinds of doses I'll be getting (where poeple literally bleed out through their bladder, etc), but it can't be nice... I'm wondering why they don't use ATG/ALG, like they do with autoimmune aplastic anaemia. I guess it just hasn't been trialled yet. Cytoxan is a much older drug. > You have been sooo informative, I really want to thank you for sharing > your knowledge with me (and everyone else too!). I think that having > any info is better than having none (less stress on the head, ya > know?). > > SD (Annie) Signaturespammage trappage: remove the underscores to reply I'm going to die rather sooner than I'd like. I tried to protect my neighbours from crime, and became the victim of it. Complications in hospital following this resulted in a serious illness. I now need a bone marrow transplant. Many people around the world are waiting for a marrow transplant, too. Please volunteer to be a marrow donor: http://www.abmdr.org.au/ http://www.marrow.org/ >(oh and Abatacept probably >won't either since I am not responding well to anti-TNFs anymore). Abatacept seems to work well for anti-tnf non responders, it is not an anti-tnf drug. I would not rule this drug out. If the biologic drugs had not come along I would probably have been on Cytoxin but fortunately it is not used much anymore. Good luck I was extremely happy I never had to go on it. Thank you Remicade! Wish I could give you more advice. -- MZ Visit my website: http://www.mzuschlag.com Annie, It is always so scary starting a new regime. I am paranoid too and always check the net. Sometimes it isn't a good idea - especially if the information isn't exactly to suit my situation. The questions I ask myself now before starting anything - 1. what will they be monitoring and what will I do to ensure I follow that strict monitoring regime. 2. Do I trust my doctors to check the results religiously (I do in my case and I have 2 doctors checking the results. When on gold and cyclosporine for example I also had to check with the doctor each week to ensure that the results were okay. Sometimes you need to put routines in place to do this. 3. Is there an option (which in your case seems limited right now. I know your worries about permanent care right now. Everything is kind of scary here too since my rd says no RA meds until all this is over (the ms type reaction to the enbrel) and that it will probably take 6 months to a year. That is so scary as I am way too independent for my own good. By the same token I am determined I will make it through. The important thing to remember is there are all these new things coming down the tube and some that you and I haven't tried - such as prosorba column maybe! Hang in there and if you ever want to talk I am here. Hoping this treatment does the trick though. But if you are in doubt don't be afraid to ask for a second opinion. Your RD might just welcome that as well. Kelly > Okay, so I've got an appointment to begin Cytoxan treatment for my RA > on 9 December. Being the paranoid that I am, I check out the 'net for [quoted text clipped - 45 lines] > > Smokie Darling (Annie) |
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