If so, please share and help a newbie! I am supposed to start on MTX in a couple of weeks and I've read all about the nausea, hair loss, brain fog, depression and fatigue. I'm so scared and have spent the better part of yesterday and last night crying in my bed at the thought of experiencing those side effects and putting my DH and my boys through this. This is so unlike me.
Please, if you have had positive experiences with this med, please share them. I just need some hope that the side effects will all be worth it!
Thanks so much!
Hi,
I just started mtx 4 weeks ago and i felt exactly like you. the first day I took it i just stood there and stared at those pills like they were the plague. I had nausea for 2 to 3 days after, it was bearable, and now the nausea is getting less and less after each week. i think my body is getting use to it. i have been on synthroid for the last 3 years for my thyroid so i already had hair loss and hair problems. i havent noticed any new hair loss. ( and i am very vain about my hair). the only thing i can say is try not to focus on the side effects. I haven't had any significant changes in my ra but I will keep thinking positive. My doc said dont expect an instant miracle. I hope this helps.
kkotts8
I've been on MTX for almost 18 months and really only suffer some fatigue the day I take it, I have had a little hair loss but not really noticable to anyone except my hairdresser. One side effect is the hair loss on the legs, I hardly have to shave anymore. The first couple of weeks I was mildy nauseous the day or so after taking my dose but that eased pretty quickly. It hasnt' 'cured' me but it has slowed down the RA noticeaby. I've been on plaquenil with the MTX for the last 6 weeks and haven't noticed any difference with that, if anything I would have to say I'm a little worse, but that could be for any number of reasons.
It's not all as bad as you think it might be. Just be patient and let it do its work.
When I first started taking it I did feel really tired the next day. I discovered early on to take it on Friday or Saturday night so that I could dedicate the following day to rest. Try not to think of that as a bad thing. All of us with RA whether you are on MTX or not really need to give our bodies a chance to rest and catch up from all the activity we go through weekly. Once I started to dedicate my Sunday's to rest it became something I looked forward to. Sometimes I'd sleep late......take a shower around 11:00 or 12:00 and then just put clean jammies back on. I'd read, knit, watch SoapNet all day....Nap. My family knew that this was my routine and only bothered me long enough to see if I wanted anything. All these years later I really don't need to do that like I use to. Occationally I'll take a nap on Sunday afternoons; but it really doesn't keep me from making plans like it use to. I now take 25mg a week and don't notice any side effects. I have noticed my hair is thinner than it once was; but for me it hasn't been anything dramatic and certainly not something that would stop me from taking it.
Try not to worry so much about the side effects. The majority of the things you read about will never happen to you and you will have waisted valuable time worrying about it.
Good Luck!! This could be the change you've been looking for. Try to go into it with a positive attitude. That will make a difference.
Hi,
I've been on mtx for about 15 years now. I hated the thought of using mtx and actually put it off for a while. Then when I could hardly move, I knew I had to try it. I've done very well with mtx! I have no side effects at all!
Good Luck!
Kelly
I took mtx for 15 years,(between 4 & 2 @ 2.5) I did have the fatigue, but none of the other bad things people talk about. Now, after an operation I'm taking 6@2.5 and do feel fatigue, I also take Remicade 4th treatment in 8 weeks, and prednisone down from 3 pills to 2.5 (because of intense pain just one month ago!! I've come a long way!)....prednisone was a miracle drug for me, but I can't 'stay on it' because it does something awful to your bones, etc. Wikipedia explains it. MTX if you need it is a good way to start with the RA meds, I think, and even though the literature sounds really scary (they give this in large doses to cancer patients), we take a small amount to combat our autoimmune system attacking us. I felt my stiffness was worse after my last (Tues) 6 pill weekly dose, but now I'm feeling much better. WE just have to do what we have to do!! Good luck with how you feel after. It may not be so bad as you think....but no one here can know. We all react differently to this stuff --the RA & the MEDs, that is. Maybe you could plan to 'take it easy' after you take the pills--just in case you don't feel good? let us know how you do and keep writing...
Welcome from, sarah
Mtx has worked great for me. If you have lots of unwanted side effects from the pills you can always inject it. Without it I think I would be still out of control and miserable. Make sure your doc puts you on folic acid to avoid mouth sores and hair loss.
I do my mtx shot in the evenings because it does make feel wiped out about an hour after I do it and the next day. You can always plan on taking your pills in the evening when you can go to sleep and on a day where you can rest the next day.
I was in this position upon diagnosis in 2004. When I was first advised to go on it, my mother and I looked at the methotrexate pamphlet.. and said "yeah right".. and that summer I suffered with incredible pain.
I do not take mtx but my daughter was on it for two years and it put her localized scleroderma into remission when other meds had not worked. She had some naseau about 24 hours later but that lessened and no other side effects. My father-in-law has been on it for years for RA. Without it he can't get out of bed-he swears by it. Everyone is different in how they respond and react to meds, but don't be afraid to give it a try. Maybe it is the one that will "work" for you and if you have problems you can try something else. Good luck to you-hope it goes well.
Laker
MTX reduced a lot of my swelling and now I am using injectable with no nausea only fatique.Momto2boys - I too was very apprehensive about beginning methotrexate - the possible side effects is enough to scare everyone. However, after much consideration and at the strong recommendation of my dr. , I started them back in July - Dr. started me off with the lowest possible dose (5 mg) per week and increased it gradually to (12.5 mg) per week as of a couple of months ago. He encouraged me to take them on a weekend night so if I did experience nausea or fatigue, I would have some time to recover before going to work on Monday. Initially I experienced both every week but what I discovered was that I did a lot better if I ate a large meal the night I took them. Pumping myself full of fluids also seems to make a difference. Today, it's just on occasion that I don't feel great the following day. If and when that happens, I just try not to let it interfere with my normal activity which makes it easier for me to forget the tired, nauseated feeling.
I think most dr.'s include Folic Acid (1mg per day) when they prescribe methotrexate. It helps with the possible side effects. I take it daily but I think some others here do not take it at all or some just not on the same day as the methotrexate.
The benefits far outweigh the risk - it's worth giving it a chance. Best of luck to you! Happy Easter!
Thanks so much to each of you. I am trying to remain positive and am trying to read as much as I can about RA as well as MTX. I keep coming across the nasty side effects listed, but not too much about how it has really helped people. It helps to hear the positives from real people who have been there. I have to keep my eye on the prize: being able to get around with my two boys, whom I adore, and my wonderful husband.
I've never been a weepy person, but I just cannot stop bursting into tears over the last two days. Is this helped or made worse by the MTX? Also, do most of you take the pill form?
Thanks again!
I take injectable MTX now. I started with oral MTX and had some GI problems. They have all disappeared with the injectables.
The *only* problem I have, is fairly significant fatigue the following day. I just adjust my schedule to accomadate that, and work around it. I know it is going to happen, so I just make allowances for it. I can honestly say, the good effects far outweigh the bad.
Good luck~keep us posted.
Phats
I take it in the pill form and I'm so thankful that my body accepts this method well. Not all do.....but you'll know fairly quickly and you can switch to the injections if nessesary.
Your positive attitude will be a great advantage to you as you move forward.
Reading all the information about the medications is certainly a good thing. Education is a valuable weapon in this fight; but don't let it scary you to the point of holding you back. Try to trust in your doctor. They've been at this a long time and their knowledge should guide you.
You can do it. Stay strong. RA doesn't have to ruin your life. You have it with in your to run RA; not the other way around.
I started with pills and went to injections because of the side effects. I could just not cope with them as they were overwhelming for me. As soon as I switched to injections that all went away. The only side effect I have now is the fatigue the next day and I just do my shot on a day where I can rest the next day. I try to get up and do some simple housework chores to keep moving. Like dishes and a little picking up.
For me, the benefits have far outweighed the risks. As you read here, there are some that have been on mtx for a very long time with great results. It is sometimes difficult to weight the risks vs. the benefits, but after reading what some people have to say here....the benefits have been great for them.
Don't worry about being weepy and crying. This is a HUGE decision in your life and it effects not only you, but your entire family. It is enough to make just about anyone emotional over it. Do not worry, that is normal. And don't hold back...let it all out!!
I was just like you, I was more worried about taking meds for the rest of my life than the RA itself in the beginning. I delayed MTHX for 3 months initially, just took the plaquinel but knew that it was inevitable eventually to combine the two. I made the plunge about a year and a half ago and it has been VERY helpful. No side affects to speak of, I take it Saturday evening (five tablets). I still get pain but not to the extent I had in the beginning, stiffness has improved significantly It does take a while to kick in, maybe 3 months, everyone is different. Good luck and put your fears aside, you won't know the results until you try it. I was always told don't delay. Happy Easter.I take pills and have never had a problem.I've taken MTX pills for 17 years, have slowly increased it over the years to 7 pills/week. I've had a few elevated liver tests, but have always been able to get them back in line with cutting back a pill for awhile. No side effects that bother me.I, too, was apprehensive about taking MTX. I was concerned about the side effects. The discussions with my RA helped me work through my concerns.
I have been on MTX for about 6-7 months...Ihave a very difficult time with dates. It was the best decision I have ever made. I started with 7.5 mg/week in the pill form. After the first two months we increased to 10mg. The only side effect I've had was fatigue the next day and that was only in the beginning.
MTX has changed my life.