View Full Version : A Stupid Question...But a Question Nonetheless
04-06-2007, 08:56 AM
How long did you all have to be on chemo? Specifically methotrexate, but cellcept too as I am soon (hopefully) to be on it. I know every case is different, but I am curious to see the "range."
Me and my medicines; it's a constant battle inside. While I KNOW they make me better, I hate taking them. It's like there's a kid inside me that wants to go out and play in the sun, but they are sick and I must keep them indoors. That's how I battle with taking daily meds.
Thanks to all who answer. Love, Kathy
04-06-2007, 05:17 PM
Hi Littlered, I've been taking MTX for over a year now. From what I understand it will be a life long thing unless a miracle happens. I don't know about any other chemo type drug, MTX is the only one I've ever had to take. The only other meds I've taken are Naproxen (didn't last long before it tried to rip my stomach open) Plaquenil (which didn't do a thing) and Prednisone (ahh.. the miracle drug) which I take 7.5mgs now and tapering off again for the second time. I will probably take that the rest of my life too always hoping to be weaned off. I'm sorry to be the bearer of bad news. I hate the medicines too, I know just how you feel. I feel like I'm being poisened. I told my doctor that and he laughed and said that wasn't too far from the truth. Nice huh. If the lupus doesn't kill us the meds may. I suffer side effects all the time. I'm sorry you're struggling with the medicine. It is not fun. But then again either is the pain we feel and suffering we'll have if we Don't take them. Right? Keep your chin up...
04-07-2007, 11:17 AM
Ohhhh how I hate the pill organizer. Everyone stand up and revolt against pill organizers! It makes me feel about 110 years old. Yeah, but then without the pill organizer I'd probably forget the pills or overdose myself. And, without the pills I'd probably feel like crap - or 'buy the farm' as they say. So...the organizer and I have reached an understanding. It's a permanent part of my kitchen countertop.
Kathy, I can relate soooo well. I just hate the idea of all of those chemicals in my body. My doctor is pretty certain that I'll be on at least some of these meds life-long. I'm still working on reducing prednisone, but something always seems to sabatoge that. I'm on imuran and colchicine too. Both of those could be long term, but we're not sure yet. And who knows what's around the corner for any of us? That's the insidious thing about lupus (all connective tissue diseases, I guess.)
I feel blessed that there are meds that are helping me live a life that is reasonably normal. I wish there was a way to do it without them. There are folks on this forum who seem to be doing a lot with natural substitutes - I'm just not brave enough to try that.
Hang in there with us Kathy - we're all walkin' that road together, to one extent or another. Hope you have a good holiday weekend. Happy Easter.
04-07-2007, 01:54 PM
this wasn't what I wanted to hear about today for sure, but you folks always tell the truth. My numbers are low enough to go on something else and I MUST as I can't take the nausea anymore. Compazine no longer works. I HAVE read about Merck's "EMEND", or aprepitant, but don't know if Lupus patients can take that.
does this mean chemo even when we go into remission?????
have a happy easter, too. I will be wearing in church, a gorgeous raw kelly green satin dress/coat (I *never* get to wear it and I love it) with my new long auburn wig. I'll be stunning if sick. Thanks for answering, and love to you all, Kathy
04-07-2007, 02:22 PM
Emend would be a last resort for me - if you've tried zofran, kytril, and anzemet and none of them work for you, then emend might be an option. But it has nasty side effects which to me are just as bad as the vomiting from chemo - and if you are on certain meds the drug interactions can be life threatening. Has your doctor tried zofran and the other antiemetics, or just phenergan and compazine? I never had any luck with either of them, but zofran and kytril both worked well for me.
04-07-2007, 06:33 PM
Kathy, I was sooo, sooo sick all the time on the MTX pills was taking 20mgs a week (8pills). I actually ended up so sick with gastritis I couldn't eat a thing for 7 days. My hubby was freaking out, I lost 8+ lbs. which was a terrible, terrible thing for me since I am a very thin person already. The doctor temporarily took me off the MTX and once my stomach began to recover (about 2 weeks), he switched me to injections. I take .6cc which is the equivelent of 6 pills...I think.
6x2.5 = 15mgs. Since having injections I do NOT have any nausea or headaches anymore. It has made the world of difference for me. I don't know if your trouble began with the pills or not but maybe talk to your doctor. I'm sorry this is all bad news for you, hope you feel better. I hated the nausea too, it's awful. **hugs**
04-07-2007, 09:38 PM
I've been on Cellcept for almost a year now...AND LIFE IS SO MUCH easier to handle. I don't sick like with everything else. I take 4 grams a day.
Talk to your doctor, I wish mine had recommended it sooner - but the process of elimination is the safest way to go. I hope that you find relief soon.
Hang in there friend, you're in my thoughts and prayers.
04-24-2007, 05:39 PM
I was on chemo (cytoxin) for only 3 months, and probably threw up 3 of four weeks. (1 treatment/month), but i've been on cellcept and prograf for over 2 years now and don't notice any side-effects. They put you on those meds after a kidney transplant. Also called anti-rejection meds, immunosuppressives.
04-27-2007, 06:53 AM
taking half the dosage of MTX now and am taking Zofran. It works sooo much better. I don't know if it is the decrease in the mg of MTX, or the zofran, but I am not looking a gift horse in the mouth, if you know what I mean! Life is good, and getting better all the time.
04-27-2007, 06:58 AM
I sure wish MTX had worked for me. I wonder if we gave it enough of a try. My doc switched me to Imuran months ago and it seemed to be working, but then my liver function tests went south and she had to eventually cut the dose in half. It may not be enough of a dose to help me (it's usually prescribed by body weight, apparently, and what I'm on now would normally be given to someone much smaller than me.) I'm crossing my fingers that I'll remain stable. If not, then it's on to another drug - maybe one of the new ones, she thinks.
05-20-2007, 12:02 PM
:D Yayyy, I am on only 2 pills of MTX every week. I have some nausea still, but not like it used to be at all! (I used to vomit so hard and so much that I kept expecting to see my slippers ending up in the bucket!) I spend a couple of days on hot tea with honey, toast with beef broth (sometimes I add plain rice) and as I feel better, tomato soup with grilled cheese. That's what my mom always fed me when I was sick, and it's what I crave now. The rest of the time, I can eat fairly normally, though not much. This is okay because my weight is just going up a little bitl. I am now taking only 5 mg of Prednisone every other day and it's not a bad dose at all!
My doc is so darned vague about how long I will take this, when I will switch to something else, etc. It's always "wait and see" with this disease, isn't it?
Impatiently yours, Kathy
05-20-2007, 08:19 PM
That's great news! Tomato soup and grilled cheese are my 'comfort' foods, too - childhood leaves strong messages programmed in our brains (and our tummies, apparently!)
05-21-2007, 06:22 AM
Ditto on the tomato soup and grilled cheese - that was one of my favorite childhood meals. But the tomato soup had to be Campbells back then, none of the other tomato soups would do.
Kathy, I'm so glad the MTX seems to be working for you.
05-21-2007, 09:00 AM
Can you all tell what Cellcept is??? I know the Plaquinil is not working and I go back to my doctor in about 3 weeks. Just want to have the correct information when I go to see him.
Thank you and Gob Bless you all,
05-21-2007, 09:14 AM
cellcept is a transplant drug to help your organs handle being where there at, i take 2 grams a day with no real noticeable side affect from it, it can be used in conjuntion with prednisone that helps to drop your immune system so cellcept can work better. here is a url for a clinical explanation
05-22-2007, 09:15 PM
Wow :shock: , I have felt that I wasnt on much for medications for a while now, lol, apparently I was wrong, lol... :oops:
I've been taking 6 MTX pills per week now since January; on 7.5 - 10 prednisone daily; 40mg Relpax- prn for migranes; 25mg propranolol for my HBP and apparent new TIA problem (which happend last week when I thought I had a seizure or something along those lines); 4mg tzanadine each nite for the awful overnight cramping as a chaser to my tylenol pm, ha ha :lol: ... hmm, what else goes on this laundry list? :? LOL..
I did try Plaquenil, but it didnt do anything either for me... For herbal remedies, I take Omega 3's and 6's; the centrum silver type of daily multivitamin; have omitted all dairy from my diet (this helps me greatly with nausea problems overall, and I can tell if I only have one small portion of ice cream or similar things) and replaced dairy with soy products across the board. Oh yeah, I almost forgot, I make sure I eat several portions of meats/protein each day adn more carbs than sugars. I know it sound funny to most of my friends and family, but I find it hard to keep weight on most of the time, although I eat all the time, :) lol.. And prob the most important thing is I dont deny myself anything I would like to eat, cuz let's face it - life is too short to tell yourself 'no' over the little pleasures you can enjoy, eh?
Ive actually had several years where I was very symptomatic and had no diagnosis of lupus but rather a severe misdiagnosis of a mental illness :roll: , so I am thinking that being put on psych meds and the massive problems they created for me ended up creating a different progression rate perhaps? Does that make any sense to anyone? :?: Has anyone else had that happen to them from how the onset came - symptom-wise...??