Can I stop taking methotrexate all at once or do I have to go little by little, like with prednisone? I take pills, 20 mg once a week. Also, has anyone taking MTX lost their hair? If yes, does it come out a bit at a time so you're always wondering if you're really losing it, or does it come out in clumps so that you know for sure you're losing it?
Yes, it is safe to just stop taking Methotrexate. That is what will happen if you should become sick or need to have surgery. I've had multiple surgeries and stopped abruptly without any consequences. BUT, it's always wise to ask you RD or GP before discontinuing any medication. :)
Gale
My daughter took that dose a couple of years without hair loss. I have found that prednisone makes my hair fall out a bit more than normal. I know sewveral people on methotrexate for years that do not seem to have any hair loss (but then I never asked them about it!)
Laker
I took it for two or three weeks, my Mom has been on it for about three years. The answer to your hair question (I have had "thinning' with Arava), is that it just sort of sheds. You will find more hair in your brush, on your clothes, in your shower drain. You will run your fingers through your hair and find like 5 or 10 hairs tangled on your fingers. I actually demonstrated this for my RD from the Arava. Good thing with the Arava though is that it has stopped falling out and has started growing back. Just grows so darn slow. I can't wear a ponytail quite yet as I have a sort of really thin spot on the right side of my head. Dang it.Hi,
I am on MTX and sometimes skip a dose if I have an infection or whatever. There doesn't seem to be a problem with stopping it but I would chat to your Dr before making a major change... In terms of hair loss, mine is just thinner than it used to be. All I noticed at first was lots more hair in the drain after washing it and lots more on my hairbrush. ALso I have to vacuum my bedroom more as I get loads of hair on the carpet! My hair thinning had steadied off - it's thinner than it used to be but it's nto getting any worse now - the folic acid should help to prevent it getting too bad but everyone's different and it's just a case of see how it goes for you!
I hope this helps...
KT
Linn~
If you skip your dose it's likely you won't see any difference for two to three weeks. You might though. For me if I even go one day over I surely notice. In fact after 3 or 4 days I look forward to my next dose.
If you do skip your dose or stop taking it keep in mind that it will take a while to get back to the place you are now. If oyu are doing well and don't think you need it anymore I'd suggest lowering your dose verses skipping it all together.
If your urge to stop MTX prompted by the hair loss?
Thanks to all for your replies
I have heard Embrel works best in combo. with mtx and that may be why you are feeling better. In a few weeks if you are feeling worse, you could always restart mtx, but I would run this by your dr. first just to be on the safe side.
I am on 20mg of mtx and I have hair thinning. One of things that a lot of us girls here do is get a new hairstyle that doesn't show our hair loss. Besides, it is always refreshing to get a new 'do! There are also shampoos on the market (talk to your stylist they know the best ones) that help with hair thinning. You might also want to talk to your doc about maybe upping your dose of folic acid.
I would urge you to talk to your doc about stopping the mtx. It really does help and that is why you are feeling so well. There have been studies done that biologics (like enbrel or humira etc.) work best in combo with a dmard (like mtx or avara) and return people to live very fulfilled lives.
You do not have to swell symmetrically to have RA. There are times I will have one hands swollen (usually my right hand) and the left one be ok. Or one knee or foot swells and the other does not. There is a high percentage of people with RA that are sero-negative. That is no indication at all of severity of disease or joint damage. I am sero-negative and have some really bad joint damage in one foot and mild joint damage in my hands and wrists.
The whole key to this is prevention. Prevent the joint damage from happening. I know you are probably feeling pretty good but it could possibly be what they call a medication remission. Most people in remission stay there by staying on their meds despite how well they feel. The goal is to keep you feeling well and I am really afraid of what would happen if you stopped one of your meds. I would hate to see you regress. It is so hard to recover from that. Trust me on this one. I as on and off mtx and humira over the fall/winter because of infections and getting a couple of viruses. It took me 7 months to feel halfway decent to where I could function. It caused a bunch of other issues also.
Please think very carefully before stopping the mtx.
I get where you are coming from, but like everybody says - tell your doctor!!!For me I ended up having to be taken off Humira. I was at a GREAT point for me. Although I never really bragged about it here. It's because I knew it was induced by my medication; I was in remission.....or felt like it. I've been up and down this hill many times.
My doctor and I had even started reducing my MTX. I was down to 18mg or something like that. After I had to be taken off Humira we had to increase that to 20......now at 25mg and I can't go any higher than that. I've got to figure out something new to add.
I say; if it ain't broke don't fix it! Enjoy feelin good for at least a year before you mess with a good thing. It's so hard to acheive.
Gramm~Tha'ts excellent advice you gave. I especially like the haircut idea. Although my hair falls out by the brush full weekly I"ve never really had a problem with it. Then again I'm blessed with a really thick head of hair. It grows back. I have my hair cut in a lot of layers but it's well past my shoulders. It fluffs up nicely!
Wow. I wasn't bragging about feeling good, what's to brag about? As if I could take personal credit for that. I only got slammed with this in February, and my doctor's only diagnosed it as RA in April. Apologies to anyone that thought that I was being that obnoxious. And thanks to everyone who took the time to give me advice. When so many people with the experience to back it up tell me the same kinds of things, well, I'd be a fool to ignore that. I guess I'm having a hard time thinking that I have a life altering disease. And by that I do not mean that I think that I am somehow more deserving of good health than the next person, I just keep thinking their must be a mistake. I know I'm grasping. I just want to be how I used to be. I don't really even feel that great, my shoulders, fingers and knees alway hurt, but it's tolerable. One positive thing that has come from this is that after the horrific pain I was in for 4 months, I am more understanding and compassionate toward other people's suffering. I would never take my own relief from that pain and try to rub it in the face of those who are still suffering.Hmmm....I never thought you were bragging. I love it when people are feeling well and doing well. It shows that there is hope for everyone out there to one day feel good. Even if it is only just the pain (sometimes I don't think we will ever be totally pain free but it sure would be nice) is at a level where you can tolerate it and function with it. That is a huge step from where you started and where some other people start as well.
What you are feeling with there must be a mistake and wanting to be the way you used to be is really very normal and I would bet a majority if not all of us went thru the same thing when first diagnosed or if they went into a major flare or the ra got out of control for awhile. It has been found that people with any chronic illness (and also their partners or spouses) go thru the 7 phases of grief. What you are most likely going thru is denial. Boy I have I been there done that lol. Here is a link that can better explain this than I can lol. http://changingminds.org/disciplines/change_management/kuble r_ross/kubler_ross.htm
Don't worry....I don't think anyone thought that you were rubbing anything in anyone's face. We love to celebrate people getting better here!!!
lincolnOH NO!!! I didn't mean you were bragging Sweetie. I'm so sorry. I wasn't referring to anyone.....I was just kind of trying to explain the ups and downs of this disease. I'm so SORRY!! Please don't take it that way.
I was just trying to explain that with this disease I've learned to expect the down times. I try not to get too excited when things are going well because things can change at the drop of a dime.
Again....I'm sorry. I didn't mean anyone was "Bragging". That was the wrong way to phrase things.....and if you're feeling good that's great.
Lovie....Whew! I'm glad that I didn't offend you. I don't want to make everyone hate me, especially when you've all been so nice to me. I do take folic acid, and this might sound weird, but I'm not really sure if I'm losing my hair. I didn't ever notice how many strands came out before I started MTX. Now it's like, it's tangled around my fingers when I put in my conditoner, and when I brush it, there's always loose strands that I have to pull out, the question is, was it always like this and I just didn't notice before?
I take my MTX on Fridays, and I did skip yesterday, but I guess I'd better go take it.
Here is a new thing. I just noticed a small lump, skin colored, not red or itchy or anything, by the joint closest to my fingernail. Could that be a nodule? It doesn't hurt.
Grammaskittles....is this your name because you really like skittles? Have you seen that commercial with the singing rabbit? It's hilarious! Anyway, I just looked at that website. I suppose I can see a bit of my own attitude in it, especially telling myself that every symptom really means something else. Even though I can logically see the connection, I keep thinking, yeah, but I just don't think I have it. I mean, seriously, I have the symptoms, my doc thinks it RA, I responded to the medication for RA, I'm still achy like people with RA, now I have a lump on my finger that's maybe a nodule that people with RA get. So now I think, well, maybe I am in denial. But then I go, no I'm not. I really don't think I have it. Is craziness part of RA too?I also know what you mean about thinking you don't have it. I always ask my doctor "Are you sure" He just laughs at me now. He promises he wouldn't have me taking these meds if he wasn't sure.
The bump you see could be a nodule.....or some sort of cyst. I have one on my right ring finger that ALMOST looked like a wort. It's close to my finger nail bed and it's caused my finger nail to grow funny. There's a name for it and I can't remember what it is. Another member posted a thread once and it showed pictures. It looked exactly like mine. My RD also called it some sort of cyst but I can't remember what it's called. Mine's not a nodule. I would have remembered that. It doesn't hurt....but it's not pretty either. lol.
It's funny you say that about coloring your hair right now. 5 minutes ago as I was drying my hair I was wondering if I should stop coloring mine. I decided against it. I've been blond my whole life, I started coloring it when it started going to that awful dirty dishwater color. Can't picture myself any other way.LOL!! Yes my name is GrammaSkittles because I am a gramma and I do love Skittles. In fact...naughty hubby brought me home some from the candy machine in his break room after work last night lol. I am trying to lose weight now that I am off the pred and he is not helping!!!!!
Yeah a little craziness is part of RA lol. The ups and downs with this illness can drive the most sane person a little crazy lol. It can be so overwhelming and there is just so much to deal with on sometimes a daily basis.
I notice my hair in my fingers when I condition it, hair hanging out on the bathroom counter after I brush it, hair on my desk, hair everywhere!!! I really want to chop most of it off (it is very long thick and curly ugh) but it is very expensive for me to go in and have a new 'do done.
I dye my hair too Lovie and have been doing it for a long time. I do wonder if that does contribute to my hair thinning from the mtx.
Long thick and curly.....you really got hit with the stick, huh?
I hope everybody has an enjoyable, pain free weekend! I'm off to my sister's pig roast.
And one more thing......THANK YOU all for letting me go on and on with the "I don't thinks". It even sounds childish to my own ears (or eyes). I'll figure this out one way or another. Ya know, my mom always says that the internet is evil. But for me, it's been a blessing
Linda
I have to agree that I'd be careful in stopping the MTX and would discuss it with your doctor before doing so. It would be different if you couldn't tolerate it and it made you sick. It would be a shame to be feeling so well and stop it only to find out that the MTX was one of the reasons you are feeling so well in the first place. As others have said...sometimes it's a real battle to get back to feeling good again too. There's some really good advice in the posts as always. I also have to agree that you're experiencing some denial but don't feel bad sweetie...I was diagnosed in April of 2005 with an RA Factor of 189 and I still go into denial mode sometimes. That's after I suffered for years without getting a diagnosis because I was afraid to know. Unfortunatly we have never gotten mine under control and it leaves me thinking that they HAVE to be missing something....it MUST be something else. I think that's all very normal with any chronic illness. I certainly don't want it so I should be able to wish it away.
Again, please talk to your doctor and think things through thoroughly before discontinuing any medications.
Peace & Love...Neasy
Having been diagnosed this year with RA and taking MTX, I thought I would pass along what my RA had to say. He told me that I would have to take MTX the rest of my life. He said within just a few weeks I would be in bad shape again if I stopped taking it.
When I went to my oncologist (I took MTX 10 years ago for breast cancer), I questioned her about taking MTX again. Her immediate response was to be sure I always took it because it was so helpful for RA.
So....although I don't want to take it, I have resigned myself to the fact that it is my best option for living with RA. My mother was not fortunate enough to have been given MTX as a RA treatment and she died after many, many years of crippling from her RA. I now consider MTX to be a blessing for me. My RA doesn't want me taking any of the new drugs (Humira, Enbrel, etc.) because of my past cancer history, so I'm thankful I have MTX as an option and that it has helped me so much.
I agree with you Flamingo. I only hope my luck will hold out and I'll be able to continue with MTX for a long time. I know from experience I'll have to be on something forever. I've tested my disbeleifs too many times to think other wise.
Many years ago I was only on Plaquinel and Relafin. After about two years on it I felt really good. I told my first RD at the time that I didn't believe it. I felt great.....figured she's cured me. She warned against discontinuing the meds and promised me I'd be back regretting that decision. She was right and it took years to acheive that same measure of success.
I do think that's just something we all go through and if you are anywhere as stuborn as I was at the time you'll have to prove to yourself what other's already know. I'm a see it to believe it type of person. So I do understand that way of thinking.
Yeah, I think that you guys are right, and I guess I'll take my MTX tomorrow. I see my RD in a couple of weeks, I suppose I can wait that long to stop. But I have left out an important chunk of why I have doubts about whether I have RA or not. This is probably the biggest reason and I will try not to make it too long.
In the 4 months that I was pretty much an invalid, I saw alot of doctors. It started when my left forearm kind of hurt one morning. I didn't think much of it, it wasn't anything really. Three days later my wrist was red and hot and inflamed and quite painful. It was late in the day so I went to the emergency room, I thought I must have hurt it more than I originally thought. The doc there said it was cellulitis, gave me an antibiotic and sent me on my way. Later that night the pain was so intense I could not stand it so back I went to the ER, They said again it was cellulitis, gave me some pain med and I went home. Two days later my right wrist was just the like the left. I went to my GP and he agreed with the ER docs and told me to keep taking the meds they gave me. A few days later it was in my knees, then it just spread all over, from one joint to the next. I never knew where it would turn up from day to day.
This went on for weeks and weeks. I saw an RD, but he was getting ready for a trip to Greece or somewhere and just looked at my feet and tried to set me up with MTX shots. I said no. Then I went to another RD and he was puzzled. Didn't know what I had, but did think I had reynauds phenomenon. After I saw him I wound up hospitalized because so many of my joints were inflamed that I couldn't bare the pain to stand up and for my husband to try to help, well, my shoulders, elbows, and hands were all so bad that there wasn't anywhere he could touch me. In fact, we had to call an ambulance. I saw more docs there and no one could figure out what was wrong with me. That's where I met my current RD. He gave me a megadose of steroids through an IV, and that was the first time I felt sort of right since it all started. But it didn't last for more than a couple of days.
When I went in for my first office visit with him he said He wasn't sure what I had, sent me for more blood work. At the second visit he said that he had tested me for everything under the sun and if it isn't RA, then he had no idea what I have. So he was just going to treat me for it and see what happens. At that point I was very happy to be calling it something and very happy to have a possible treatment. I started the MTX pills and waited for several weeks and they didn't help much. That's when I started the enbrel and the very next day after I started it I was practically normal again. I could walk without doing that "bad hip, swollen ankle, arm folded across my chest" thing that had become how I got around on the occasion that I could get around at all.
So you see, even my RD doesn't really know it's RA. In fact, he said that even though RA doesn't affect people in the exact same way, he had never seen it ravage someone the way it had me. He said that he never saw it cause so much pain. So I said that maybe I'm just a bigger baby than everyone else and he said "no, I can see in your blood work why you hurt so badly, I've just never seen RA do this.
So I'm thinking that if all these doctors have tested me for all these things and still can't say with any certainty that it's RA, maybe it really was just a virus and maybe it's gone now. And maybe the reason I still have some pain is because this virus did some permanent damage. And if I stop the MTX and have a flare then I can at least say, ok, I have this. But I don't think it'll go that way. And this is the one part of this that seems silly to me, but I do think this and I can't help it. RA just doesn't seem like something that would happen to me. It's just like, it makes no sense. And I'm not saying it should or shouldn't happen to me, it just doesn't seem like it would. It's too big and I'm too average.
CHAPTER TWO
HAHAHAHA Just kidding!
I can understand your doubts. If it was me.....I'd tell the doctor you want to cut your MTX in half. See what happens over a one month period. If you're still doing great; and I mean just as great as you are now....Drop it all together on your next visit in. Trial and Error is often what it takes to firgure this stuff out.
Your reaction to the steriods proves it's some sort of inflammatory illness.
I think it's best if you go ahead and prove to yourself one way or another what's going to happen. That way you'll get the questions out of the way and you can move forward. Other wise you are always going to have this serious doubt in your mind. That can be very stressful.
Good Luck!
Thanks
Linda
Hi , Hair loss is scary for us and so we tend to panic, but my doctor says 'it will grow back, unlike his!' Now, isn't he vain (but very sweet!). When I increased my mtx to 20mgs from 10 I had more hair loss but it has decreased. So, it seems to be at the beginning of taking it that it is the worst? It gets into the soap in the bath tub, and is hard to get out. I apologized to my husband who uses that same bar of soap, he said, "NO problem'!! Whatta guy.
Our son and his wife are going to a resort in Arizona this weekend, it is 110 degrees! They'll be hoovering under the sheets in the air conditioning and soaking in the pool, not all bad they are on a little get away while my grandaughter is in Europe. Why? , I ask would you go to Pheonix in July?????(not to them)Oh well......LYNDA
Arizona!! That's where I always say I'm going to live someday. I want to hike through those beautiful mountains and dodge scorpians and have a cactus in my front yard. And wear shorts and a tee shirt every single day. And never have to scrape ice off my windsheild again!
Did your grandaughter just graduate, and now she's doing the back pack through Europe before she has to be a responsible adult thing?
I have two sons and one daughter. Both boys are in the Marine Corps, but (praise God) neither are in harms way. One is in Japan and the other in North Carolina. My daughter is 15 and is NOT joining the Corps. They'd have to get waaaay cuter uniforms before she'd do that! But she sure is proud of her big brothers. We all are though.
Hope your son and daughter in law enjoy their trip.
Linda
I can for sure why you have doubts about the mtx. What an up and down time you have had!!!
I am glad that you are here and that you have found support!!
Thanks. I like you grammaskittles! But then, I like everybody here. Have a great 4th everyone, I'm heading up north in a few.
Linda H
Linn~You aren't whining and we don't mind at all talking about what we know. Haven't you noticed?
I know even now after 13 years it's very valuable to me! I've learned more at these website and by talking to other friends that have been there before me always helps.