Starting methotrexate tomorrow, reading so many bad things about it that I feel scared.

[dolcie6]

[Philip]

Well I've been on it for aboutttttttttttttt 5 weeks lol 7.5mg per week and 1 frolic acid per week and all has been really great, as I was told lol don't think about it just do it. Apparently it is a wonder drug for some.

Good luck

Philip

[BoneyC in reply to Philip]

Wish I was prescribed "frolic"acid!

[Hidden]

Hello

Understand you have been on Cimizia , excuse spelling. For quite a while, do not know history.

You should be under RA nurse and will have regular bloods taken.

If you have contraindications call the nurse and she will make decisions regarding MTX.

Do not worry, they will keep an eye on you

Good Luck

BOB

[Hidden]

Hello

Understand you have been on Cimizia , excuse spelling. For quite a while, do not know history.

You should be under RA nurse and will have regular bloods taken.

If you have contraindications call the nurse and she will make decisions regarding MTX.

Do not worry, they will keep an eye on you

Good Luck

BOB

[lainee]

Hi I am new to the site and just recently diagnosed. I am starting on Monday and although apprehensive feeling optimistic it will help. Hope it goes well for you.

[woodstar1]

I was diagnosed in may and will have to give in and start meds in august. I've put it off for ages as basically I'm terrified of the side effects but need to "man up" quick!! Hope you and me get on fine!!!! X

[nomoreheels]

Any new drug which is potentially harmful to those who don't need it is scary, so I hope I set your mind at ease a little. MTX is generally the first DMARD tried, as it's considered the gold star first line treatment. I was diagnosed in 2008 but I didn't start on it straight away as my consultant preferred the softly softly approach & he set me off on

hydroxychloroquine which was fine for a while but introduced but when he introduced MTX as well I noticed a marked difference in my RD & the way I was far better than on HCQ alone. I started on tablets, as most everyone does, & I did suffer side effects so changed to injections & have far fewer problems & for the benefit it gives me I'm content to cope with those. You will be prescribed folic acid to take when on MTX & since taking this every day except the day I inject I've had even fewer problems, just a little off my food the next day & a little more tired.

It's the nature of sites like these that more problems rather than goods things are posted as often members are seeking help with anything that is troubling them with their meds & of course a drug like MTX is no exception but it is a very good option for many of us out there, you just don't always see those positive posts as often because they're doing fine on it & therefore the positives don't crop up, unless a question such as yours appears. I feel fortunate that I react well on it & have no need for anti tnf therapy as many others do.

I hope it proves to be as successful a treatment with you as it has been for me. Try to think of it as your antedote as I do.

[woodstar1 in reply to nomoreheels]

Thanks for your responses to these type of questions, your insight is very reassuring for us newbies! My Dr wants me on a triple therapy and I said no but I am now going to actually start on the sulfasalazine and perhaps work up to hydroxychloroquine and MTX. Very scary times but thanks to folk like yourself on here it does make things a little easier.

[nomoreheels in reply to woodstar1]

Kind of you to say thank you but really only sharing my experience of what I know is a difficult time. I didn't say in my previous post as didn't want to overly concern you but my first meds were hydroxychloroquine, a corticosteroid, celecoxib & nabumetone.

It will get better, it could take different meds to get you sorted & it sounds as though you may be on course for the combination route if your Rheumy has already suggested triple therapy. Hope sulfasalazine works well for you but at least you're prepared if others need to be added into the mix.

Take care. x

[helixhelix]

MTX has been a wonder drug for me. It took a couple of months to get used to it, but the side effects I had to start with slowly wore off and the drug started working and I got my life back. And it's been ok ever since and has controlled my RA well. Like Heels I swapped to injections aft a couple of years, but otherwise it's been fine. One think I think helped me at the start was building up the dose slowly, so had a couple of weeks on 7.5mg and then added in an extra 2.5mg every couple of weeks till I got to 20mg. So if that hasn't been suggested by your rheumy team you could ask them if that would help you. It'll be fine!

[Jora]

Others have said it all. The drug companies have to spell out ALL the possible side effects and contra-indications in a worst case scenario in order to protect themselves in an increasingly litigious society. This does not mean that you will experience them! And you will be carefully monitored for toxicity. I imagine that the danger of untreated progressive RA is far greater than any DMARD. I do understand your fears, but hope these have now been allayed.

[suwinter]

Hi dolcie 6, don't worry you should be closely monitored. I am on 15 mg weekly, having started on 5mg just over a year ago. The dose was increased slowly to ensure that I could tolerate it and I had weekly Liver Function Tests at first which have now gone to 2- monthly as my results are stable. You just need to be aware of the possible side effects and seek help /reassurance promptly if you're at all concerned. This drug can make such a difference that it's worth all the faffing to see if it helps you! Good luck!

[lainee]

As a newbie your comments have been so helpful . I am starting on 15 mg mtx along with hydroxychloroquine. I am wondering after reading some of your comments if it would have been better to start on a loser dose but guess I will have to have confidence, give it a go and see how I get on.

[nomoreheels in reply to lainee]

Morning Iainee. I have wondered since if maybe I would have been better if my consultant gradually increased my dose. At the time I didn't realise this could be done but thinking back (can't quite remember now, he probably explained it all!) must have decided to hit it hard as I was having more frequent flares when HCQ was my only DMARD. As RD is different for all of us maybe your Rheumy thought this way best for you too. My MTX was upped a few months later to 20mg but my liver objected to that so came back down to 15mg which I've been fine on since. All you can do is trust your Rheumy as he's the one who makes the decisions as to what is best for treating your particular needs to control you well & hopefully will explain his reasons with you & any options if you're unsure about anything. We have the option to question anything we're unsure about but ultimately has your best interests at heart, I¡m sure.

Hope you get on fine with the combination & notice an improvement soon.

[Shelbie88]

I had been on MTX for 2 years which was awfull,I injected on Friday's and that was it for the weekend ( sick ),came round on Monday's. Changed to lefludimide and it's brilliant,no side effects at all.

[lainee]

Thanks nomoreheels, I love your user name it makes me smile when i see it. Well for now I am going to think I am going to be one of the lucky ones and if my body tells me otherwise at least I can get advice from you more experienced people! I feel overwhelmed at the moment with it all as I was only diagnosed a month ago and life has completely changed. I keep thinking they have made a mistake and it will all go away.

[nomoreheels in reply to lainee]

Glad I put a smile on your face! If you have a positive outlook it will serve you well. Hopefully your Rheumy will work with you through this but as you say there's always us here if there's something you're unsure about or just to rant if need be. I don't know how many times it's been said but it's many - we've all been there & relate to how you're feeling now & our lives have changed too but you'll adapt to changes. You'll learn to listen to your body & with a following wind do well.

[bosun65]

Hi Dolcie6,

Like you, I was a bit worried about going on to MTX in August last year but I soon found that several friends and associates were taking it and having no ill effects. This has also been my experience on 20mg weekly plus hydroxychloriquine twice a day and folic acid once a week. I have had no ill effects and the RA is nicely under control.

Monthly blood tests are a bit inconvenient but good to know that all is well.

Most of all, it's great to be rid of the pain!!!!

[BoneyC]

Hi dolcie6,

I think bad stories far outweigh good stories about most things, so don't be put off by some of the stories you've read about MTX. I've taken it for over 35 years with few side effects, only stopped it for pregnancies & neutropenia, it's been the best drug for me and would choose it before any others. Good luck!

[Marz21]

My rheumy wants me to start methotrexate alongside my sulfasalazine. I too am concerned about it, but willing as I cannot manage as I am, and want to improve things in any way possible. I wanted to have another child, but things haven't worked in our favour there, and now with methotrexate we have to quit trying, which is hard to face. I often wish they would tell me this diagnosis was a big mistake and that this thing was something curable or temporary, facing up to it is tough, and I thank God this site is here, as being able to speak to others has been so important. I hope you see an improvement with the medication and things go well. X

[allanah]

Have you spoken to the nras helpline? I couldn't have got through without them, they are so nice and full of ideas. Mtx is considered gold star treatment and people can get used to it! So good luck, keep chatting on here and hope you get controlled soon xx

[Hidden]

Hello there! Hopefully I can make you feel better today! I was recently diagnosed approximately one month ago. After my appointment I came home started looking on the internet and then I inwinded after a very busy and trying day. Then I started crying uncontrollably. I was just like you very scared of the unknown and what was to come with this disease. A month ago I didn't think there was any hope. I had been in so much pain. My doctor had told me to stay off the internet.

I was a healthy, active person until this disease showed it's face. I got diagnosed then me and my boyfriend broke up. So double whammy for me. I was off work on medical leave for the entire month. I really felt like there was no hope for me.

I started taking my scripts on June 3rd. The doctor added additional scripts on Jine 30th. I returned to work on July 1st. I feel damn good now. I honestly feel normal. I don't have any swelling at all. I don't have ANY morning stiffness. I can get right up from my couch or bed and the toilet without any problem whatsoever. I would have never thought this was going to happen a month ago. A month ago I was peeing in a cup to avoid the low plunge on the toilet. It was an awful time but I am smiling now.

One thing that really depressed me was I am an avid high heel wearer. I have so many heels. I was unable to wear any heels except for some wedges. I was sick about it. I was ready to get rid of them after reading stories on this site but let me tell you I have been wearing heels daily and I like 4-inch on average and I've had no problem at all.

With all that said, don't give up. This site is wonderful. It will scare you at times because of the honesty people express with this disease. I recommend you ask questions. Wrote them down so you won't forget to ask them at your appointment. When the doctor said you're taking these meds to prevent any further damage to my joints that's all I had to hear to scare me into not ever missing a dose.

Hopefully this post will help you have a better day today.

Although this disease is in curable there is hope and you will be fine. The important thing is you are going in for treatment and that's number one. Get treatment and you will be better and hopefully free of oain like me. It doesn't even feel like I have a trace of arthritis!

[Beaches2 in reply to Hidden]

That's great news 1 min, am so pleased to hear this......and am so jealous cos mine is proving a little more tricky to control. I'm sure this will reassure many newly diagnosed people on this site, and for those of us still waiting, our time will come .

Thank goodness for modern medicine hey? X

[Hidden in reply to Beaches2]

Thank you Beaches2!

[Hidden]

Oops. I just noticed I responded to the wrong post!

Let me add and tell you about my experience with the meds.

I was prescribed Meloxicam 15mg and Doxycycline 100mg on June 3rd the doctor added Methotrexate 2.5mg/4 pills and Folic acid 1mg to take daily.

Very mild side effects from any of the meds. I feel good.....I feel great!

The doc said I can stop the Meloxicam when I get ready and it can be taken on a need only basis. She said the Meloxicam isn't meant for long term die to the risk of stroke and heart attack. Im still taking everything and I will wean myself off that one eventually. Don't be scared be happy and take the meds and get way better. Everybody reacts differently and my experience has been positive and hope you get the same.

Good luck!

[Paulineg]

Hi dolcie6. Don't keep reading up on it. You'll scare yourself silly and will land up looking for side effects when you do start on it. I am on 25mg each week, plus steroids plus others and boy oh boy am I glad I listened to my dr and consultant and not the internet. No more waking in the middle of the night with that terrible pain, being able to walk my dog and even doing my housework (ugh). You take it and if you are like me, you WILL be so pleased. Good luck and all the best to you.

[Pipcat15]

Ive been on it for 5 years now. I stayed taking it in yhe mornings. It made me feel sick so I now take it in the evening after a meal and sleep off any side affects. It works for me. I have blood tests every 8 weeks so being monitored all the time.

[petalnumber2]

Hello all,

I have not posted on the site for a while, I dip in and out generally. This site has helped me so much over the years, my questions have always been answered and it's good and comforting to be among people who are in the same boat as me.

I picked up this thread of conversation on my email and I thought I'd add my own thoughts to the subject of MTX and other drugs to treat RA, and other associated problems.

It is difficult when faced with the necessity to take drugs that cause us concern, but as it has already been said in reply's here, the alternative is unthinkable when it comes to damage to joints and the crippling effects it would have on our daily lives.

I was on 22.5 mgs MTX for just over 3 years until a couple of months ago when I started having a few problems and I had to come off it. I also started Enbrel injections 14 months ago, so I was on both medications together.

I was one of those people with negative views about MTX, but after a couple of months without it, I must say how marvellous it was at controlling all the discomfort, and flare-ups, and how much it helped me to lead a comparatively normal life. So, my view has changed to more positive thoughts on medication as a whole.

It's unfortunate that we find ourselves having to make decisions about taking drugs we are not comfortable with, especially those who are very young, and will need to be on them for many more years than those of us who are, shall I say, in the autumn of our years. But, we are well looked after these days with regular blood tests to monitor our wellbeing and more importantly pick up any fist signs of complications. The dreadful distortion of joints is in a minority compared to sufferers of yesteryear, because we have choices to make.

Take care everyone, especially the newly diagnosed. June xx

[Kittykatxxxxx]

Hi

I thought I would die after my first tablet, still alive. It has been good for me, I mean I'm not going to lie I feel groggy after my dose. But it is no where near as bad as I thought, wish I would have gone on it earlier x

[Maddy123]

My husband has been in methotrexate for 4 years with no problems at all.

[13mp9]

its best thing ever happened to me just make sure you go for all your blood tests and you will be alright, im on 6 years and still here mary x