I really believe it may be time for me to stop taking MTX. I cannot see my rheumy until August as things stand right now. I have tried to call (her office is 100 miles away). They don't answer the phone; you leave a message. I have left three.
I have shaved my dietary intake to about 1200 calories/day, and instead of losing weight, I am still gaining. I have 1/2 cup of cereal with six ounces of fat-free yogurt and 1/2 cup of fresh fruit. Dinner is four oz of low-fat meat and two veggies. I have a cereal bar with my night-time meds. I drink mostly water, and about 16 oz soda with aspartane every day, sometimes for a real treat I drink unsweetened tea. Ugh. Yes, I'm hungry. I could eat this computer! And, if you could see me you would know this isn't anorexia! lol
My knees hurt, my back hurts and I can't stand for hardly any time (maybe 45 minutes-an hour). I'm off work right now or I would be in a boatload of trouble. I must get this resolved before school begins in August or my job will be in jeopardy, as well as my health. I'm thinking, stop the MTX and go back on Plaquenil. It wasn't perfect, but it wasn't this bad!
It's late, I may be panicking, and I may change my mind by morning. Or not.
So how do I discontinue MTX? Are there any special precautions? Do I simply stop taking it or do I have to taper?
Good morning Byrd Feeder. When I was on methotrexate it was making me horribly sick. When I saw my rheumy he told me to stop taking it. Not wean myself off it just stop it that day. So I would think it is safe to just stop it. Not sure that is what I would do though. Can you get an appointment to see your PCP? Sometimes when another doctor calls them they are more inclined to return the call. Best of luck to you,keep us updated. Hope I was able to offer you SOME help. (HUGS)
You need to see a nutritionist NOW. 1200 hundred calories only provides enough nutrition for a 91 # person. (I assume you weigh more than that) It estimated that your heart and kidneys burn 200 calories per pound per day, your brain about 109 and your liver 91 calories per pound. The theory is if you reduce your calorie intake you will burn body fat. This is TRUE only to a certain extent. Drop too many calories and your body decides to protect it self by going into starvation mode (slowing down the metabolism.) THIS IS EXTREMELY DANGEROUS Your heart is at risk, your liver function is decreased (this is what makes your drugs work.) and gall stones start to form. The simple fact is if you are much above 91 # you could drop dead.
Have I got your attention??? Its not whether MTX is working or not. YYour body simply hasn't got the juice to use it to fight anything. Every part of your body is busy trying to keep you alive. You need to let them know what you have been up too and for how long. Nothing is more devastating to students than having their teacher pass out.....
Weight loss is GOOD but not at the expense of your body being able to do its job.
Sorry if this isn't as "supportive" as it could be, but I truly believe you are in trouble......
Right, right. I think Elizabeth is right (about stopping mtx) and tnt is right (that you are starving yourself). And you wonder why you are tired?
I also think that you need to do as Elizabeth suggested, which is to get in touch with you pcp to see whether they can make contact with your friend the rheumy.
Another thought: I notice that you are being a very good girl on the "low fat, good carbs" front. There is a growing body (excuse the pun) of evidence that a lot of people do and feel much better on a "low-carb, good fats" regime. You are an avid researcher. Check out Gary Taubes and Dr. Wm Davis. Pretty compelling stuff there. It might be worth a try for you. After years of struggle, and iffy bloodwork, within three days of going low carb, I knew I'd come home. My lipids and other bloodwork improved within a few months, and I lost weight. Lots of others have found the same.
When Rheum told me to stop the MX there was no withdrawl, just stop, but try eating first, and have some sugar, or honey, maple syrup would be great, something to raise your bloodsugar!!
For God sake Byrd, EAT SOMETHING, have a real coke if you want one!!!
I have had to skip MTX doses due to sickness, and the Rheum Dr just had me stop. You might also want to call your pharmacist. They know so much more about the effects of starting/stopping these drugs. On that note, head over to Starbucks and get your self a full-fat caramel machiatto!!!
Agree with tntlamb, he’s giving some ‘tough’ love but is just trying to help you understand how serious the combination of your diet and MTX can be. I wouldn’t recommend stopping MTX until you have spoken with your Rheumy, I’d be calling three times a day if need be to get a response. Do you think you are having a flare? Are you taking anything for pain (naproxen, prednisone etc)?
Losing weight can be very beneficial for those of us with PsA but not at the expense of your overall health. I hope you are able to get in contact with your Rheumy soon.
Thanks, all of you, for your replies to my question. I was so upset when I posted this message.
I finally heard back from my rheumatologist's office. Nurse left a voicemail telling me to stay on the MTX, restart Plaquenil and I am to call back for a "pain med." Don't ask me; I have NO idea what all that is about. I suppose she is not addressing the weight issue because she simply doesn't have an answer. That can happen, and I'm not mad about it.
I got my GP involved--maybe good, maybe not so good. He is switching my BP meds around a bit and sending me to PT to see if it will help the constant headache I've had for the past week. So my next few days are going to be quite busy. He doesn't know what is going on with the weight thing either, but at least he is concerned. He did, like you, tell me to eat a bit more. When I whined that I can't do that right now, he said we have to get me back on my feet first and deal with the weight later. Oh goody. lol I'm about to burst the seams in the new set of clothes, too!
About 15 years ago, I lost a phenomenal amount of weight by eating a low-fat diet. I was extremely conscious of every bite I took. Cooked and prepared ALL my own foods--I mean everything, down to ketchup and mayonnaise. And I lost over 150 pounds. I no longer have the stamina to do all that. But I'm already back up by 40 and it totally depresses me to think I will put any more weight on, without knowing how the heck I'm going to get it back off!
I did ask my rheumy and GP, both, about a contraindication for aspartane and MTX, and neither said they were aware of any. Could you send me a link, Lamb, about that? I googled it and came up zero.
I've calmed down a bit, but I'm still not a happy camper. Thanks so much for talking to me about this...it means so much!
I am constantly being tested for my Thyroid, seems this is difficult problem to detect, but seems to be talked about a great deal with our symptoms. I have considered an Endocrinologist because for one reason I still have inflammation of the pancreas even though the dead gall bladder was yanked years ago.
Seems there can never be just one thing wrong, has to be at least a boat load!
Hang on, talk to us if you need us, seems few of us sleep, alway someone here!
Get better, Byrd!
SK
Byrd Feeder said:
Thanks, all of you, for your replies to my question. I was so upset when I posted this message.
I finally heard back from my rheumatologist's office. Nurse left a voicemail telling me to stay on the MTX, restart Plaquenil and I am to call back for a "pain med." Don't ask me; I have NO idea what all that is about. I suppose she is not addressing the weight issue because she simply doesn't have an answer. That can happen, and I'm not mad about it.
I got my GP involved--maybe good, maybe not so good. He is switching my BP meds around a bit and sending me to PT to see if it will help the constant headache I've had for the past week. So my next few days are going to be quite busy. He doesn't know what is going on with the weight thing either, but at least he is concerned. He did, like you, tell me to eat a bit more. When I whined that I can't do that right now, he said we have to get me back on my feet first and deal with the weight later. Oh goody. lol I'm about to burst the seams in the new set of clothes, too!
About 15 years ago, I lost a phenomenal amount of weight by eating a low-fat diet. I was extremely conscious of every bite I took. Cooked and prepared ALL my own foods--I mean everything, down to ketchup and mayonnaise. And I lost over 150 pounds. I no longer have the stamina to do all that. But I'm already back up by 40 and it totally depresses me to think I will put any more weight on, without knowing how the heck I'm going to get it back off!
I did ask my rheumy and GP, both, about a contraindication for aspartane and MTX, and neither said they were aware of any. Could you send me a link, Lamb, about that? I googled it and came up zero.
I've calmed down a bit, but I'm still not a happy camper. Thanks so much for talking to me about this...it means so much!
I'm not sure I can give a direct link as my "information" comes from our School of Pharmacy (Montana) Its not as much counter indication as much as a "bad idea" Its more an interpolation. Aspartane is the most difficult of the artificial sweeteners for the liver to "detox" mixed with MTX it gives the liver a pretty good work out. The result is either reduced liver function/damage (a pretty good possibility with MTX alone) a fatty liver from any artificial sweetener (I'l lfind that study its reffered ti in the above monograph), or interestingly weight gain. Worse medications aren't always effective as they could be as they are less effectivley metabolized. Frankly I'm suprised your Rheumys office hasn't lectured you about liver and liver healthy diet. Granted mine is extreme in that they have a mini class on it when starting these meds....
Having fought weight most of my life heres what I have learned from nutritionist endocrinologists and several weight loss clinics.
The most critical organ to weight loss is your liver...... Its what breaks down BODY FAT. There are ways to stimulate it and help it out eliminating carbs, caffeine, and artificial sweeteners among them (There are studies indicating the use of artificial sweeteners actually causes weight gain)
I too once lost a LOT of weight on a low fat/calorie diet, but I was 20 years younger and metabolism a lot faster then. As we get older, more sedentary, and this disease of ours amplifys both, that isn't the best way to do it. A slowed down metabolism when given low calories and low fat (especially) goes into overdrive preserving body weight and can acutually add weight. All your other body functions are effected making you feel like crap.
Interestingly enough there is a direct link between slow body metabolism and depression. prolly one of the reasons folks being treated for depression are told to get up, get out, and get active as part of their treatment. Also I'm sure we are all aware that low endorphin production is a part of "depression" and that anti-depressents are given to get it going. People with chronic pain are also given antidepressants, (yeah depression is certainly apart of all of this) but no so much for depression as to stimulate endorphin production. Endorphins are necessary for pain control (Opiads also stimulate endorphins thats why when they are being used as street drugs folks get "high")
I have shaved my dietary intake to about 1200 calories/day, and instead of losing weight, I am still gaining. I have 1/2 cup of cereal with six ounces of fat-free yogurt and 1/2 cup of fresh fruit. Dinner is four oz of low-fat meat and two veggies. I have a cereal bar with my night-time meds. I drink mostly water, and about 16 oz soda with aspartane every day, sometimes for a real treat I drink unsweetened tea.
If this is your normal daily diet then I'm going to say that you aren't eating enough food and your body is afraid so it's gone into survival mode; hanging onto every pound.
I'm on MTX and my usual diet is a 6 oz cup of fat free greek yogurt along with a banana or an apple. Mid afternoon snack is a slice of cheese or some nuts. Lunch is usually a salad with plenty of veggies and chick peas tossed with balsamic vinegar. Dinner is 3-4 ozs of meat (usually chicken or fish), a half cup of rice and 2-3 cups of veggies. Any snacking after dinner is an apple, pear, or some berries. Drinks are coffee, tea or water with lemon.
I'd say to revamp your eating to feed your body good things all day long. More fruit and veggies and you'll feel fuller longer and lose weight.