For the past 2 years or so i had been battling so many health issues and I had a suspicion I may have RA because of all the symptoms and my very strong family history. 3 weeks ago I saw my new GP and she was so wonderful. She listened to all my symptoms and ordered tests and afterwards she says..what you have is classic of RA and you need to go see a rheumatologist. I waited 3 weeks for tht appointment until this morning i went in and after further discussion and more blood work and more xrays he diagnosed me w it. We discussed treatment and we chose to go MTX the lowest dose for now. Will be having a follow up in 2 months. Any thoughts on MTX from those who are on it or have been on it. I would really appreciate it. I need to know what to expect. I will also try to read up on it. Thanks everyone.๐
Finally newly diagnosed.: For the past 2 years or so i... - NRAS
Finally newly diagnosed.
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Hi marvelous. Sorry to hear you have R. A but glad you've finally got a diagnosis. It took me a very long time.
I was on mtx for over 20 years. Didn't really have any issues except nausea at first. It's a very good drug but some people have issues with it. I think it's important to try it for yourself as blasting this disease with all you can to prevent damage to your joints is very important. What happens to others may not happen to you, we are all very different.
Take care
Kiki
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Thank you so much ..I will keep all these in mind. My rheumy wants me to choose between MTX and sulfasalazine.
I was on both at the same time.
I have had no problems at all with MTX, even when taking 25 mg a week. Now on 10 mg. After a few weeks on SSZ, only one tablet a day, I got tinnitus, which I still have a year later. However, your experience could be totally different. My advice would be to go for the MTX. Truly it could change your life for the better. They don't call it the gold standard treatment for nothing. If you absolutely can't cope with it, they will change you to something different.
I hope things work out for you.
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Thank you. Indeed my husband and had read a great deal about it and had decided to go for it. Yes here in America is also seen as the golden treatment for RA. my rheumy assured me of its safety and the benefits outweigh the risks.
Hi marvalusxoxo and welcome to the forum. You have come to the right place for help and advice from lots of experienced people. I have been on MTX since last September (being diagnosed last August). I had nausea to begin with (I was on 15 mg) and drowsiness, decreased appetite for a short time and headaches, all of which eventually cleared. I was increased to 20 mg beginning of March was gave me awful hair loss (this doesn't affect that many people) so reduced back to 15 mg again. Hope you get on OK with it, which I am sure you will. All the best. x
Yes I agree we are all different and I will take whatever benefit I get. Thanks for your help and info.
I've been on Methotrexate for just over a year along with Hydroxchloroquine and have just started Sulfasalazine. No real problems with any of them. I get a bit of fatigue and a wooly head the day after the Methotrexate but that has improved after a few weeks on each new dose. I believe that Methotrexate is widely considered to be the gold standard for RA so I was very pleased that it suited me. Don't worry if it doesn't work for you, though, there are plenty of options.
Your GP sounds like mine - keep hold of her - good ones are worth their weight in gold.
Ive been on 20mg mtx for 3 years +. The only issue I have is a kind of mtx hangover the next day, however it doesnt always happen. Im also on sulph & hydroxy. It is better now you have diagnosis ( sorry its this though ) and sounds like you know about RA. You now know what you are dealing with and can have a plan with your rheumy. Im still learning.
I wish you all the best. This forum is great.
I have much greater movement and less pain since starting mtx in April (current on 20mg per week) as I could barely use my hands before it's huge. Before starting mtx I had to have care visits (agency carers) every day to help me in the bath, get dressed, wash up, do laundry etc. Now I can do these things myself (but not necessary at the time I want to as its worse in morning and evenings). So whilst I have to pick "good times" to do things typically afternoon is best, it means I can do things. Bathing myself and dressing myself feels so good I can as for more than a year I couldn't
I have been on MTX for over 10 years. It gave me my life back.
It did take several months for the initial nausea/headaches to wear off and the drug to start to work. But after about 12 weeks Iโve never looked back (๐ค๐ผ).
So sorry you have RA. Please do not worry too much about methotrexate. I have been taking it for 5 years and it has given me back my life. I was warned before I started it to carefully choose which day to take it on as some people can find the following day to be a bit difficult. I get very down mentally within an hour of taking it, so I have a late supper and take it just before I go to bed. By the next morning I feel better and by lunchtime I am back to normal. Other people get other symptoms but in my case the longer I take methotrexate the less symptoms I get. Hope you are feeling better soon.
Hi and welcome to the group. As with all drugs it is very much a case of try it and see. What suits one doesn't suit another. Your rheumy team will keep a check on you and if mxt isn't right for you there is always another drug that is so don't worry. I have been extremely fortunate with mxt. I have taken it for 18 years now with no visible side effects. It has been perfect for me and is for very many people. Good luck x
Hello marvalusxoxo, welcome to this forum full of people who will understand what you are going through. I am on MTX since 2009. I went from tablets to injections very soon after starting to reduce nausea. That was the only minor side effect ever and soon after the switch that disappeared as well. I love MTX. After diagnosis, when the worst of the pain and fatigue was improving, I found the NRAS website. To know as much as I could about RA, the medications to treat it, exercise, self management etc. helped me enormously to get to grips with RA. There is so much dangerous information on the web, but what you get on NRAS is based on research and facts. They also have a very good help line and a peer to peer phone contact with trained people who live with RA. I hope MTX will work for you and you'll find a good treatment plan together with your care team. Stay in touch. All the best.
Sorry you had to join our lovely group, though it is a lovely and supportive group.
I was diagnosed last September and have been on MTX since. Started at 7.5 and am now at 15 mg weekly (oral), with 2 mg folic acid daily. The folic acid dosage seems to vary among doctors. I was on 1 mg FA for many months, but that was upped to 2 mg because of very slight and very occasional headache and stomach issues the day after taking MTX. Other than that slight bit, I haven't experienced any side effects that I know of.
I had had severe shoulder pain for 2 1/2 years prior to diagnosis and it disappeared within a week or so from my first dose of MTX. It went away so quickly that I wondered if perhaps the shoulder pain was actually not from RA. However now I really do believe it was RA and I'm just a lucky so-and-so to have had MTX work for that so quickly.
My finger joint tenderness took a little longer. This summer, I can finally go long stretches of days without any tenderness. (I never did have much swelling anywhere.) So maybe I'm in remission, I don't know. In the spring, the rheumy had said I was close to remission. I will get new blood tests plus x-rays in a week or so leading up to my next appointment with her in mid-August.
By the way, I am RA positive and have max'd out anti-CCP levels. Seropositive to the max.
So I'm someone who would tell you not to worry and to look forward to possibly have a good result soon. And don't worry if you don't, because, as I've learned from these amazing people here, you may have a good result after some months (which seems common). And even if that doesn't happen, there will be new avenues to try and new ways to find relief and a feeling of health again.
I have just been prescribed with MTX low dose which I will start once i get my prescription. I am taking it alongside benepali. I have been told with it being the low 7.5mg dose that I should not feel any tummy problems. Fingers crossed. You will need to go for regular blood tests where the docs can monitor any side effects on your liver. I find that reassuring, that its checked and highlighted with the blood tests
Yip. It's all monitored very carefully to keep you safe x x
Hi!
Sorry you've hadto join us, but lovely to meet you๐
I started taking MTX back in about 1990, so I've been on it for about 30 years now. I was diagnosed with JIA in 1982 at aged 14 and drug choices were very limited back then. I haven't had any major side effects/complications from MTX in the time I've been taking it. MTX seemed to be a game changer when it came along and as others have already said, is considered the gold standard treatment. I've hadto have various other drugs added to it over the years, but that's just because the disease has been aggressive and resistant and a fair bit of damage was already done in the first few years before MTX became available.
I think it's great that people can get started on this drug so quickly nowadays because as you are probably aware, the crucial thing is to try and minimise any possible joint damage. So, the quicker things can be bought under control, the better for you.
Obviously, no drug suits everyone and some people do get side effects. The thing is though, no-one knows how they will react until they try a particular drug. I think I would say try it - there's every chance it could work very well for you.
Very best of luck with it๐
Wow! Thank you for taking the time to share w me your experience. It truly gives me encouragement and it makes this journey easier knowing that others have been on this med for as long as you have. All my blood work came back so i will be starting on it this Monday. I am a bit nervous but i am thankful that we caught it early..that's what my rheumy said to me. Thanks again๐ท
You are very welcome. I'm pleased that other people's experiences have helped you. I completely understand why you would feel nervous. You are suddenly being faced with some big changes in your life. Just give yourself some time to adjust.๐
I would also take a lot of comfort from the fact your Rheumy has told you the RA has been caught early. That really is encouraging news.
I hope it goes well for you with the MTX, and do let us know how you get on. ๐ค๐