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Medical Forum / Diseases and Disorders / Arthritis / August 2005mtx and enbrel
for those of you who take enbrel with MTX, how much of the mtx are you taking. My doctor told me to start the mtx up again, I was on 17.5 and can not tolerate that, told me to either take 10 or 12.5, you would think he could tell me exactly how much to take. His nurse said if it were her she would take 15mg, thought it was kinda strange it was left up to me. Then first enbrel shot went okay. I seem to have some more anxiety, but I think it is just me. I am still not able to get the shoes situation under control. Can't find any pair that works, on about my 10 pair, good thing the store lets me return them. I used to wear orthodics, and haven't now for about 4 weeks, not sure if that is why my back is hurting, was told that I didn't need them they were over correcting me and that is why my hips were bad. Who knows. Well just wondering what dosages everyone was taking. Thanks Becky Becky: I'm on 25 mg of MTX, injected. The injected form seems to produce fewer liver and gastro side effects for many. You might look into this. I simply could not stomach the pills. Turns out 25 mg...even more... is not a large dose in the greater scheme of things. A recent study found very little increase in side-effects all the way up to 40 mg. My RD, who is NOT especially aggressive bumped me up to 50, at one point. His rationale was simple: We're already doing blood tests for side effects; if they continue normal good. If they don't, they don't. There's nothing about 50 mg side effects that are any more emergent--or any less--than 25 mg side effects: The pulmonary problems are potentially deadly for ALL doses but very, very, very rare. Anything else can wait a few weeks between bloodwork. So stay on top of it. Look into injecting it or dividing the pill dosage into two days' worth. And remember: Hit it hard! As for the shoes and feet, give the Enbrel a few weeks, yet. And if it doesn't work, try Humira, then Remicade, then Kineret or the new one, Abatacept. Don't get discouraged. Keep asking questions and keep slugging. Thanks Marshall, You take a big amount of MTX, I couldn't tolerate even the 17.5 made me a zombie for over half the week and other issues. I will probably try the 12.5 this Saturday and go from there. This disease is no fun, but I am certainly learning to except what I can do and not dwell on what I can't do anymore. Have a good weekend, Becky > Becky: > [quoted text clipped - 18 lines] > doesn't work, try Humira, then Remicade, then Kineret or the new one, > Abatacept. Don't get discouraged. Keep asking questions and keep slugging. Becky: You might try switching to Arava. It has its own set of benefits/problems and is more costly, but RDs often consider them somewhat analogous. The trick to all of this, as I'm sure you're figuring out, is finding the combination of drugs that brings maximum gain with minimum side-effects. For me the best, for now is MTX and Enbrel. For you it might be Arava and Humira. Or something else. Do NOT give up. Do NOT settle for less than the best you can get. Push, push, push your doctor. In the medium run, you'll get better relief. In the long run, less damage. In the short run you'll feel more in control, and that's never a bad thing. In a few months, you'll know as much about this disease and what works as your doctor. Hang in there. > for those of you who take enbrel with MTX, how much of the mtx are you >taking. I am also on 25 mg which is 1 cc by injection. Enbrel has been great! I was on remicade for close to 5 years, but developed a very atypical reaction known to this group as "The evil foot thing". Since stopping remicade, it has not recurred. I find the enbrel very easy to administer and tolerate. I feel much stronger, have more energy and spunk, and do not have any appreciable amount of morning stiffness. I have few, if any, swollen or painful joints. My ESR was close to 100 while on arava, and never less than 48 on remicade was around 22 in both of my lab tests since starting. My CRP was near 80 and is now 7. That is not to say that I do not have pain. I have pain from previous joint damage and from a hip prosthesis that is not functioning well. I had that surgery in 1982 so it is small wonder that it needs revising. You are at the beginning of your journey with enbrel. Hopefully it will give you super relief. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. Becky, I also take 25 mg of mtx with my enbrel. I do the mtx by injection like most here do. Becky, why not give the PT a try like your RD recommended. You'd be surprised at how helpful they can be sometimes. They may even be able to help you sort out the whole foot/orthotics thing. Definitely worth looking into. I think it is pretty cool that your RD is allowing you to decide what the best dose of the mtx is for you. We are all different, and since your RD knows that you have had problems with the mtx he is allowing you some lee-way. You can start at 15 mg and work down if you have problems. Then enbrel often takes a while to kick in, so you still need to be hitting the disease hard with the mtx and doing what ever you can to get things better controlled. Some warm water exercises can be a wonderful help as can the PT stuff. Keep at it and sooner or later you will find what the best regimen is for you. Until you find that, go easy on yourself and try not to stress out over every little thing. It really does get better!!! Donna G I was on 20 mg of mtx when we started the Enbrel and continue to take that. My RD hoped we'd be able to drop the mtx once the Enbrel got going but it hasn't been *that* effective for me. Mind you, I have PA rather than RA and seem to have one of those cases of it that *really* want to stay active! I'm thinking that maybe your doctor gave you a choice of dosage due to your bladder condition that complicates things. But it would certainly be appropriate to call and ask for clarification on the dosage if you want to do so.  SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare Becky, that fatigue can really get to you. I'm on 22.5mg right now. inject. I can't go aboove 15mg on the pills without the nausea getting the best of me. So I'm doing the shots. The fatigue is about the same, as are the mouth sores. But the RD switched me to leukovorin and I'm doing much better. I take 10mg a day after the mtx. It's a folic acid erivative. Supposed to be more effective than the folic acid supplements. It has really haeled with the fatigue and the sores... one other thing - it takes a good 4-6 wks for the fatigue to lessen for each dose increase I try... When you were trying the higher doses, did you stick to them that long? It's really hard, I know, but it does get better. Your body gets used to it. I now only have about 36 hours of complete fatigue after the shot. It's horrible as I have 3 young children but it's much better than the 3-4 days worth take care alison Becky, how are you doing? How many shots of Enbrel have you done so far? It does take a little getting used to, doesn't it? I never in a million years thought that I would be able to give myself an injection. Sometimes I still hover a little bit just before doing it...then I laugh at myself. What the heck is a little pinprick compared to the joint pain?? I am on 20mgs of MTX now along with Enbrel, 10 mgs of prednisone and Azulfidine. I am on leukovorin (sp?) as well right now, but I am really worried about hair loss. I seem to be losing quite a bit, and my hair is very thin and fine to start with. I was on MTX 2 yrs ago when my arthritis first started. My new doc says that the old one didn't keep me on it long enough, nor at a high enough dosage. I do have to say that since trying the MTX this time around (Ive been back on it about 2.5 months now) I think it's actually helping. Maybe I'm just hopeful...lol. I am hopeful for you too, however...good luck with whichever dosage you decide to go with, Charlene I take Enbrel and MTX. I was taking 20mg of MTX but my hair thinned out. I dropped down to 15mg and my hair grew back. I upped it to 17.5mg and my hair still grew back. I'm still at 17.5mg. (This was done with my doctor's okay.) I guess 20mg was toxic for me. This dose plus the Enbrel has worked for me. I also take 500mg of Naproxen and Folic Acid for the RA. Good Luck. Elizabeth I take Enbrel and MTX. I was taking 20mg of MTX but my hair thinned out. I dropped down to 15mg and my hair grew back. I upped it to 17.5mg and my hair still grew back. I'm still at 17.5mg. (This was done with my doctor's okay.) I guess 20mg was toxic for me. This dose plus the Enbrel has worked for me. I also take 500mg of Naproxen and Folic Acid for the RA. Good Luck. Elizabeth Char, I have only had one shot, will take my next one tomorrow. I had to skip the mtx last week, was on 17.5 but it was not much for me. So then he said either 10 or 15 left it up to me, I took 12.5 but it was like starting all over again, the fatigue and the muscle aches, I don't know. I had thought if you took enbrel you could lower the mtx. Maybe not. I really battle some issues with my hips and ankles, but I think they are not RA, I am sure it is the battle I have been having trying to find a good pair of shoes. I had worn the same brand and type of shoe for the last 3 years, they don't make them any more and the one that replaced them I don't like. Anyway started getting really tight muscles in my right leg and hip and the new foot doc thought it was because I was wearing a shoe that was slightly corrective and using an orthodic and I was getting over corrected. Why it didn't t do it a long time ago I am not sure. Needless to say I have spent my whole summer trying to find some shoes. I go back to work in 2 days and it looks like I may go barefoot!!! I bought the asicis gel 2100, I don't like them but I kept bringing shoes back and decided to stay with that, usually I wear new balance, anyway the doc is making me some orthodics for them even though she doesn't think I need them, I bought some super feet to put in them but they are so hard and wore them today and it made my good foot go numb and killed my ankles, so I am back to square one, if I could get this straightened out I would not even complain about he RA I don't have to much pain, the RA doc thinks the hip is the RA, but the x-rays showed nothing, and when I asked him for a cortisone shot he said no get PT. Well didn't mean to ramble, I have just never in my life had such a hard time finding shoes. But thanks for asking about how I was doing, I will let you know how the 2 shot goes tomorrow. Bye Becky > Becky, how are you doing? > How many shots of Enbrel have you done so far? It does take a little [quoted text clipped - 14 lines] > decide to go with, > Charlene Becky, It can take time for enbrel to work - don't expect miracles on a first shot. Also don't forget you have made 3 changes quickly - you will feel the results of those changes - not always in a positive way. The sore hip can be arthritis in the sense that it could be bursitis or any amount of things. Thank goodness he prescribed pt instead of a cortisone shot - shows he is responsible. If it is inflammation in that hip the pt might be able to do something without cortisone. I have had great luck with pt modalities on hips. My rd always likes me to try pt first before any cortisone shot - less damaging and more long term. Even when I get a cortisone shot the pt is usually needed as follow up to ensure that things continue to improve. Even if it isn't osteoarthritis in the hip (which is what they are checking for on the xray) it can still be inflammation from the ra. That is what the enbrel and mtx does in most cases - gets rid of that. It does take time and yes orthotics may be needed to make sure it doesn't come back. The orthotics sometimes take time to experiment with to get the adjustments right etc - just like the meds. Nothing is fast in this disease except in some cases the damage if you don't do anything. Anyhow just be patient and persistent. I know it is hard but if you give everything a chance then eventually you might be able to lower the mtx but for goodness sake at least the mtx is working. More than some people can say. Kelly Hi Kelly, Thanks for the advice. I see my primary care doc in a few days, because of my insurance he has to refer me to the PT not the RA doc. Just more red tape. I took my second shot of enbrel about a hour ago. It sure does seem to flare up my interstitial cystitis. I usually don't have to take any meds for it, almost gone as long as I don't take anything to flare it up. The mtx did at first also, so maybe in time it won't. I got really dizzy about a half hour after taking it but okay now. Just hope the other resolves soon. I start back to work tomorrow and sure hope that I will have the stamina for it. I work at an elementary school. Have to keep working need the insurance. I couldn't believe how exspensive enbrel is. WOW Well thanks for the words, if I remember right don't you also have IC? Do any of these drugs bother you> Well I am going to try and take my dogs for a walk, sure do miss exercising like I use to. I use to go about 5 times a week, now I am lucky if I make it to they gym 2 times and it isn't much of a work out. I think I am going to try water aerobics, not sure how that will be. Well have a great labor day weekend. Becky > Becky, > It can take time for enbrel to work - don't expect miracles on a first [quoted text clipped - 24 lines] > > Kelly
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