I may need to start taking the dreaded methotrexate next week. What is a typical dosage? What amount are people on?
I am TERRIFIED of the side effects as I watched my mom die, not from RA, but frrom an infection and other side effects she got because of RA medications.
Hi there.
I am on mtx, as are many, many others here. I know the drug side-effects listed are scary, but remember that the serious ones are rare. And metho can really make a big difference to our progress :) Also, potentially serious side-effects are usually picked up early by the regular blood tests that are necessary while taking the drug.
Do a search on this site on 'methotrexate' or 'mtx' and you will get lots of email discussion threads to read about it.
Re. dosage, 5 - 7.5 mg once per week, seems to be the lowest usual starting dose. They increase it slowly, if needed, until they get the desired therapeutic effect. Some people here are on 25 mg per week, but I think that is about the highest they go. Talk to your rheumatologist about your fears too, which are perfectly understandable!
Best wishes for your improved health!
I have asthma too and the best advice I can give is to see your doctor sooner, rather than later, if you get ill. You might need to take antibiotics as a 'precautionary measure' if you get ill, rather than waiting to see if a virus progresses into a bacterial infection.
Also, have you had a pnemonia vaccination? That's a good precaution if you have asthma.
Iwas scared when I first went on it too, but it made a huge difference to me last flare and gave me a complete remission for several years...
Poof,
You have to remember that it is a lot different in the way they treat you and what they knew about treating your mom. I've been on 25 mg MTX for 6 years and had very little problems with it.
My asthma has actually improved since they have been treating my RA beause it is an inflammatory disease as well. I think it is because of the Prednisone mostly. But it is better.
I am on Enbrel and Plaquenil as well. The Enbrel has given more problems with infections. I knew I had bronchitis the minute I got it and got on antibiotics right away. I did get bad fast so you just have to be very aggressive in watching for any signs of problems.
Go to the doctor early, rather than later. Be sure to know what medicines you are on and emphasis that you have RA. Every doc that I've seen, regular Doc, ER doc, etc. has taken it very seriously.
If you are really worried about potential lung problems, start a relationship with a Pulmonalogist. They monitor your asthma and any RA problems that might develop. I love my Pulmonalogist. He looks so serious when there's a problem and practically laughs with joy when the news is good. He doesn't have that poker face and it's rather refreshing.
I wouldn't be afraid of trying the MTX. It makes a big difference in how I feel.
Poof~I've been on MTX for 4 years or so now. I've recently been on 25mg; but starting this week I'm reducing that dosage to 20mg. It's made a dramatic difference in my treatment over the years.
In all the time I've been on it I've only had about two episodes where I had an infection. Sinus/Bronchitis infections. Honestly others in amoung my family and friends have been sick with far more serious infections far more times than me. I wouldn't consider my infections at all related to the medication.
The thing is when you do get an infection the medication slows your recovery. That being the case it is important to see your PCP as soon as symptoms arrise. Mine is very good to start me right away on an antibiotic like Wendy mentioned. She never waits to see how things progress she starts me right away on something and I discontinue my RA meds until the issue is resolved.
The ONE time I had a problem I restarted my MTX & Humira (I'm also on Humira weekly) before my sinus infection was 100% cleared up. It wasn't long before I had bronchitis and three weeks later I was having a chest xray to check for phnemonia. Luckily it was just a serious bronchitis infection that took three courses of antibiotic and a round of predisone to clear up.....but it took me close to a month to get 100% over it and during that time I had to be off all my meds. That's when the problems arrise for me.
You read some really scary stuff....and obviously you have experience with your Mother and no doubt that was a heart breaking situation. Do you mind telling us a little more about the sort of infection your mother had that took her life? If that's too personal I understand.....and I hate to pry; but I think we should all be aware of the dangers related to these medications. No doubt it won't stop us from taking them; but it might help give us early warning signs of things to beware of.
I have been on MTX about a year and a half. The side effects I have are minimal. The biggest effect it has is it MAKES my REMICADE WORK!!!
Yes I get mouth sores,but not too bad,espeially if I take my folic acid. Yes I get tired, so I take it at night, yes, I can feel a little queasy (or a lot) so I eat very lightly on Friday nights.
Keep in mind they have to list every single thing that happens during the clinical trials. I am amazed that they don't inclde car wrecks as a side affect, I mean surely someone in a clinical trail someplace must have had a car wreck...
Don't worry, take the MTX and see how it goes.
I've been on mtx for around 12 weeks, and you have nothing to be afraid of. I opted for the injectable to avoid stomach problems. I started at a low dose and am now at 20cc's and its finally starting to do its thing. The only side effects I get are feeling kind of "funky" the evening I take it and being tired the next day, but then again I'm ALWAYS tired thanks to RA!!! I had one mouth sore, but my RD prescibed Leucovorin once a week in addition to the daily folic acid and it really helped. It also slowed the hair loss, which was starting to freak me out. If you opt to go with the injectable, Crunchy gave me some great training on how to give myself a shot. Piece of cake!!! I don't ever expect to be pain free, but I can live with a dull ache (most days) instead of the pain I had before. I'm quite small (5' and 105 lbs) so I don't think my RD will go any higher. I'm sure yet another med will be added next month. Good Luck!!! Hi Poof, I understand your concerns. I found out I had RA in April and my Dr. wanted me to take 15mg of MTX. After I read the side effects I was too afraid to take them. I take enbrel once a week ( no problems) and I've been on Pred for 4 weeks and we will be discussing changing meds in another 4 weeks. I listen to a program last night someone on the boards told us about on www.healthtalk.com.. it was really good and hopeful! about all the new meds that can treat RA now. I realized that I need to be more concerned about the RA than the side effects of the meds.. I don't think I realized before how important it is to slow down the RA. I think when I go back to my rheumy in 4 weeks I will start the MTX and see how it goes. So sorry to hear about your mom; I know that memory and fear is adding to your stress level, which is not good. I do hope you can find some peace, Rain
Poof, I was diagnosed in 1980 at the age of 39. My doc just told me last week how different my life would have been if I'd been born 20 years later! In 1980, I asked a different doc what you die of when you have RA and she said, infection. I figured that wasn't too bad of a way to go (what did I know!)
I've had life-threatening septis four times now - once from a kidney infection, once from an infected r. knee, once from an infected hip, one from an infected central line. More than 50% die from septis the first time. I can't remember how many times my family have been "called in to say goodbye". I'm sure you remember that with your family.
I'm not telling you this to frighten you - please don't let this post do that. I want you to know that this was all after I had been on drugs for many, many years. My early doc started with the mildest medicines and I had a lot of damage before I found a doc who meant business. Things are going to be lot different for you than it was for me and your mother, bless her. The last thing she would want to know is that you are experiencing anxiety because of her exerience with RA. This is so important I'm going to say it again!
Things are going to be lot different for you than it was for me and your mother, bless her.
Good luck, honey - you have a lot of questions for your doc - don't forget to write them down!
Kathy
I am on the max of 25mg mtx. I have done the enbrel and humira, my rheumy wants me to start rituxan (also a cancer therapy). I have fms, ms, hypothyroid, ra, and my ra and fms has been unstable this whole year. So the rituxan and mtx will be teamed together. I am so tired of the prednisone, it has been my constant companion for almost eight years now. I pray the rituxan, as my rheumy says, will calm down the fms and ra, and I can begin to lose some of the 70 lbs I have gained over the years, it will be a big relief off of my joints. Just be patient and try to stay positive.
I just started MTX on Friday... I'm taking 15mg as well as 5mg of
Hi Shannon.
Here's hoping the mtx will make a big difference to you. I've been on a low-dose (7.5 mg) for 3 months now and my bad knee has settled down - it's the first time in a year it has not bee swollen! Now the inflammation has moved to my hip, so we're planning on increasing the mtx (I'm having a hip cortisteroid injection too, next week).
Best wishes,
Thank you so much for all of the advice. Now a new question..injectable or pills? I have a very hard time swallowing pills and I have a sensitive stomach. Has anyone ever heard of putting the injection fluid in jiuce and drinking it? My pharmacist told me about that one.I can't stand swallowing pills, and I had heard that the side effects are worse with them so I opted for the injectable. The first time was a little scary, but its not bad at all. I inject in my stomach and you can't even feel it. As I said before, Crunchy gives great instructions. I figured everything from here on in is injections, so I might as well learn. You'll be an old pro in no time like the rest of us!!![/QUOTE]
Did it hurt? Is that the only place you can get the shots?
Thanks for the props nina!
Poof, one of the girls here does drink the injectable...but I dont remember who...but if you want to avoid the tummy troubles as I did, the actual injections are the way to go. It is really easy to do, it burns for just a second, but then you are done for a whole week. Anywhere that you have fat, you can inject. Mainly your belly, upper arm and inner thigh are the jiggly places and you can take the shot without going into the muscle.
It is a subcutaneous injection meaning it just goes into the layer of subcutaneous tissue. Some people will just call it a sub-Q injection.
Anyways, tiny tiny needle. The drug itself burns very nicely...but it isnt intolerable. Some people seem to not feel a burn at all. I do. I dont like it, but its not the worst thing in the world by any means.
It is easy to learn to self inject, I can give you a detail on it if you decide to go that way. As far as dosages, I seem to be maxed out at 12.5 mg. At 15mg I was having some unpleasant side effects, mouth sores and some hair loss included. Just dropping down that little bit seemed to make a difference. I may try the 15mg again soon though now that I have been on the MTX for about 6 months if the Humira doesnt start working soon.
Poof-don't worry, it doesn't hurt. I don't have the burn from the mtx like some others. I did start having mouth sores and hair loss at 15 mg, but my RD prescribed Leucovorin in addition to the Folic Acid and the sores are gone and the hair loss has slowed. My hair was already thinning from perimenopause, so it really freaked me out. Luckily I have thick hair so only I noticed it. It bothered my husband more as he thought all the hair in the bathroom was his LOL!!! After 13 weeks I am starting to feel the difference. I still have pain, but no flares and my morning stiffness has gone from 3 hours down to one!!! I never expect to be pain free, but really want to slow down the damage, which is all we can ultimately hope for. I'm currently on 12.5mg a week, but it's not permanent as my doctor is still trying to decide on a dose :) Well once again I am so glad I read the boards today. I have an appointment with my RA on Aug 28 and I will ask for the injectable MTX. He gave me a RX for 15 mg. but I never started it because of the side effects. It's amazing how much I have learn in just a few weeks on the boards. I now know the RA is much worse than the side effects, and I do like this wild pink wig I saw today...so if it happens it happens at least I'll be moving. My joint pain and stiffness NEVER leaves, it's not just a morning or evening thing. I take enbrel and shots don't bother me at all, so hopfully the MTX will make a big difference. I've been on pred for 6 weeks now and feel so fat, I'm looking forward to getting off of this..take care, Rain
I have been on mtx for 7 months (20mg) and had to go off of it for a few weeks because of elevated liver enzymes. My liver enzymes went from normal to really high in just one month...now back to normal. If you're taking mtx be sure to get your blood monitored every 4-6 weeks.
Nancy
This day 7 for me on MTX, by injection, just 0.4 cc. I don't think I'm gonna hang w/ this stuff. I'm bloated and just miserable. It's horrible in the middle of the night to have such gas pain and, well you know...I'm gonna try not mtx or sulfa drugs! I take relafen n Plaquenil still. On the sulfa drugs for a year and my numbers for inflamation didn't change. I don't know, it's tough making the choices. I think if I'm gonna trash my liver, I'd like to choose how that happens. I don't want to live to be 100, I just don't want pain to be the center of my world. I want joy & love & sunshine darn it! I hope you all are feeling well and enjoying your day where ever you are.I have asthma and I am on .8ml (20mg if you are taking the pills) of mtx and don't have any extra problems with my asthma. I did have pneumonia despite my pneumonia vaccine. It went away and my asthma has been no worse. I have no burning when I inject mtx. My only real side effect is I am wiped out the next day.
Monk...did you start the plaquenil at the same time you started the mtx? When I took plaquenil all those moons ago it made me all bloated and gassy and such. I
Nope, been on plaquenil for over a year now, so good w/ that. I injected the mtx and not happy w/ it. Gonna have blood work done @ same time next month just to see any changes if at all. If I don't flare or have bad pain, I'm going to stay away from that hard stuff! yeuk
Hi Monk,
I have a hard time when I read these posts as just when I have decided that it's okay to take these meds and yes, I'll do it, wham...a post like yours hits me smack between the eyes and there I am, back to square 1. Square 1 is me not wanting to take the toxic meds at all, no way, no shape, no form!
Not to say in any way that you've made a decision for me. I am making my own, good or not. But I am so darned easily influenced by what I am reading and seeing and hearing. I had an appt Wed am and the doc (not the rheumy, the PCP) said to me, "Stop Reading!"
Had he made an intelligent argument for DMARDS and Biologics etc then I could have listened to him but when he tells me, essentially, to go to the beach and insert my head in the sand, well...then we can not converse on any level.
I received a PM from a caring and very intelligent person on this board. She made an argument for the standard protocol which would rival any that my doctor could make. My rheumatologist should learn from her. I know she cared, I know she was right and I know she knew from experience but it's like being poised on the bridge with that bungee around you...nothing but nothing can make you jump. OK, maybe you would but it happened to me and nothing could make ME jump. LOL I chickened out! This is how this drug debate makes me feel.
Thanks for listening.
To the OP, I'm so sorry about your mom. I'm sure it colors everything you try to do. I don't even have that baggage but I'm like a sponge. I suck up everyone's experiences and make them mine. I don't need a rheumy, I need a shrink!
I take 25 mg pills....if you are just worried about swallowing the pills dont be........they are tiny! i take all 10 togehter lol but i take all my pills in one go all the time :) thats what happens when you have ben swallowing pills since you were a little kid. anyway i dont really have side effects i dont think. i take it friday night and feel less hungry sat somtimes and maybe a but quessy. didnt help me alone at all, but since im on humira and was on enbrel i take it....No, age really is relevant to RA. I have a 12 year old daughter with JRA. What I feel is relevant to RA is slowing down or hopefully stopping the progression and the joint damage by whatever therapy you chose to do to slow it down.
This disease just affects us all so individually. I went thru a period of having damage to it going into remission for years. Then it came back. Did more damage and now it is quieting down again. At one point I know I will be faced with the decision to come off my humira and mtx. Not quite yet tho. I'm actually going to see how I do come this fall when I have my knee replaced and have to go off of them for the surgery.
I'm the gal who drinks the injectible form with water. Can't taste it and I have almost no side effects at all- no queasiness or fatigue. I can even take it on an empty stomach and not have any problems. Soetmes I get a slight headache several days later, but I don't know if that from the MTX or sinus (allergies).
I suffered for twelve years and have lots of damage because I refused to take it because of the potential side effects. I wish I had started it in the first year and I feel I would be much better off today. The only pain I have now is from damage and when I overdo. I way overdo but it is so nice to be able to!
No age isn't a factor w/ these awful diseases. I just feel like it's too soon for me. The other drugs are working. My hand, hips are my hot spots. And in the past year I've dropped about 30lbs and that really helped everything. I just have to wait @ least a month before I decide what's the next step. The sulfa drugs were key in pain control I'm sure. The side effects were not jellin' w/ me. I just try to be kind to my body. I wear my shoes. good shoes in my kitchen where I'm standing for long lengths of time. Tile floors are killers. I sit on the ground vs squatting when I'm gardening. I sit in the shade for a smoke & a glass of wine vs oiling up and laying out. I swim, a lot. And the spa does heal. I can totally keep up w/ grandkids, 4 & 10 and that keeps me young. My husband has discovered gardening after 28 years of marriage. That's amusing to me on many levels. Payoff is, now he's taken over weeding & feeding and watering. State of mind though is key. Gotta find your "happy place" so to speak.Hi, I just took 8 pills last night and I feel "THE BEST" I've ever felt in MONTHS!! Please tell me it is all working for me! Sarah LyndaI know how you feel about feeling it is too soon for you. We are facing the decision on whether to put Danielle on mtx at her next appt. Sigh.
I didn't even think about wearing good shoes when I am in the kitchen doing dishes and cleaning in there. Thanks for the great tip! I hate shoes so that is prolly why I didn't even think about it. I don't lay out in the sun either since I am a redhead and would FRY even without being on the meds lol.
State of mind is one of the key things in dealing with any chronic illness. I will still have some down days but they are getting fewer and farther between as I sit and think about what ra has given to me that is positive. Better relationship with my husband and kids has been a big one.
8 of ??? pills? I know when I did have to take prednizone, it was nothing short of a miracle. good to know you're feeling better Lynda. Keeping fingers crossed for you Danielle. Glad I could help Skittles. Little stuff, major relief. I am on metho & doing really well. Not many months ago, I could not get up on my own. Things are so very much better with metho. I know the side effects are scary, but then they are rare & I am sure you have so many replies about the efficacy of metho. Take care n all the best!I've had RA since I was 23 and at the time I just did what my doctor told me. I didn't have the internet back then and everything I knew I learned from my doctor and books from the library. I'm kind of glad I didn't know all I know now or I might have been too afraid to try the medications I've used also.
BUT~Not knowing might have been the best thing for me. I did what my doctors recommended and 13 years later I have still truckin along. YES; I have some days/weeks/months that are better than others; but my joint damage in minimal and I'm still living a fairly normal life with very few limitations. My doctors promise me it's due to early and continual DMARD treatment over the years.
My x-rays and MRI's do so errosions that my RD promises me would be far worth without the medications.
Waiting isn't a good idea......and MTX has been my favorite medication to date.
Well put Lovie!my doc perscribed mtx because I couldn't handle sulfazine anymore. Good to read how many people benifit from it however. And in what ways it effects different people. I've only had one dose of mtx and I didn't like it, a lot. I'm not sayin' I won't take it ever. Just not today. The other meds I take seem to be working pretty good.