From 2013, when it all started, I am taking occasionally diclofenax and ibuprofen (up to 5 days) where I feel better and the pain and swelling of my hands joints is going away, but as soon as I am off the pains is coming back. There are positive things too- I do feel very energised and full of life- compare to begining of the year where I could bearly sleep night cos of pain...I know it is not a flu which goes away, but I still believe it eventually goes, as I am trying to be very positive (attending even hydrapool which is helping me ease) and care for my diet. I am a warrior and do not give up so quickly on myself, so the option for methotrexate is just not me and though I shall take it from January somehow I am still coping. So I really would like to find the answer if metx helped anyone and what was the beginnig felling like when on it, as if I will convince myself that there is a hope- I will try.
Thank you
Written by
GalacticWarrior
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I do understand your worries about methotrexate, and I know a lot of other people will do too.
You are obviously a very positive person and I really admire you for that. But the sad fact is that, apart from a few lucky people, who find that their RA disappears again, most of us will find that RA is with us for always. And that's where drugs like methotrexate come in because they can really help to deal with the underlying disease and to make life a lot more comfortable. As you have found, anti-inflammatory drugs like diclofenac and ibuprofen can be a great help, but they only deal with the symptoms of the RA (I think of it like taking paracetamol for a headache) so do nothing to slow down the progress of the disease itself and to minimise future joint damage. The danger of not taking methotrexate (or other disease modifying drugs) is that you are leaving yourself open to significant joint damage in the future and I know of several people who have decided not to take the appropriate drugs and have bitterly regretted it when the damage has been done and it's too late. Sorry if I sound as if I am being very negative - I'm not meaning to - it's just that it is such an important decision to make and can really affect how things are for you in the future.
I know from my own experience that the idea of methotrexate can be quite scary. But methotrexate is very commonly used for RA - and I think you would find that many, if not most of us on this forum, are either taking it, or have taken it in the past. Like all the RA drugs, it doesn't work for everybody, but for some people it can make a huge difference, either on its own or in combination with other disease modifying drugs. It is unlikely to make the RA go away but some people find it puts their RA into remission so symptoms are hugely improved. It can take a while to get used to it - and it can take a while to know if it is going to work for you (I think the usual advice is 2 - 12 weeks) but you won't know unless you try. And if it turns out that methotrexate isn't right for you - either because it doesn't work well enough or because you find you struggle with side effects - then there are many other disease modifying drugs to try. It can take a while to find out what works best for your RA, so it can all be a bit of a roller-coaster ride to start with. But hopefully once you are settled on an appropriate drug regime, you will start to feel much better.
Thank you so much for your realistic/ positive response to my post. It is true that if you do not try you will never know... I will give to myself some time and see what are the options.
You are so welcome. I hope that your doctors can help you to assess your situation realistically, so that you can make the best decision about what is right for you.
Hi - nothing much to add to what Tilly has said so well. But for what it's worth I have been on Methotrexate for 18 months and despite many misgivings I have to admit that it does work brilliantly for my RA. Tilda x
PS also worth taking into consideration that Diclofenac, Ibuprofen and Paracetamol aren't very good for you either - especially not if you are having to take them a lot in the long term. And you certainly shouldn't be taking Ibuprofen and Diclofenac at the same time?
Hi TildaT The amount of people who say that Methotrexate is great for their RA it's a pity I cant get it I I'm being attacked everywhere just now, Oramorph, Dyhidrocodeine normally strong Painkillers are not even taking the edge of it.Matt
Nothing I can say to that Matt apart from offering sympathy. I can't tolerate MTX at higher doses and Sulpha gave me a dramatic reaction. Currently struggling myself with extreme pins and needles everywhere - as bad in my book as RA pain but the only drug I seem to be able to tolerate as well as a low dose MTX is Hydroxy. Not nearly in your shoes of course but feeling a bit alarmed by the crawling ant sensation everywhere on top of deep heat. So I do understand the feeling of near desperation at least. I'm thinking of asking to have Hydroxy re-introduced as I was taken off it but none of us can recall why! X
Thank you for your post and your concern, is higly appreciated. No, I do not take them together and also not for long. Maximum 5 days ,2 tablet a day which helped a lot.
Oh good re the NSAIDs separately. As you see yourself as a warrior (I think we all are actually) you may like to read the blogs of RA Warrior on Methotrexate. Warriors need good fighting tools/ ammunition!
Hi Warrior, Everyone seems to have replied to this so haven't got much else to add, but thought I would let you know I have been on MTX for 5 years. Initially on the tablets (not very good) and have had injections for the last 3 years. You will never be free of RA once you have it but it can go into remission spontaneously and leave you alone for a while. MTX is the gold standard for RA (in a dose up to 25 mgs - we are not allowed to go higher than that - higher doses (mega) are for cancer patients. It was discovered after using it for cancer patients that it's side effect was it controlled RA). I take a 20 mg injection every week which keeps me on a relatively even keel and I also have an injection of Enbrel (an anti TNF) once a week as well. The two together seem to keep things more or less under control. During a flare (and they do still happen) I also take paracetemol - 1000mg and 400mg of Nurofen (gel capsules to protect the stomach). This works for me and was recommended by my consultant.
MTX can take up to 12 weeks to start improving your symptoms (as can the anti TNF). It also protects from joint damage as does the anti TNF. I was diagnosed February 2008 and apart from the odd swollen joint, have very little damage to my joints.
If you are recommended to take it, I suggest you give it a try. Anything which keeps this awful disease under control and allows us to lead a more normal life, has to be a good thing. Whilst on MTX you will be monitored by blood tests to make sure it is not affecting your liver. Hope that helps. LavendarLady
Thank you for your post, I will keep in mind all info and hopefully take my decision.
Best wishes to all of You!!
Blessings x
Hello love. You are truly an inspiration to me, as I hope to be for you.. This is my story..
I was born, Friday the 13th, in obvious distress. Nearly every joint in my body was double the size it should be. I was over a month old before I was actually held by my mother, not caressed or simply contacted with. All of a sudden, I was fine. It was like nothing happened, I was an average female infant. I was home for three years with my family, constantly traveling to different states to see different doctors because I was extremely underweight, and always in pain. I literally was seen by over 25 pediatric specialist who all said the exact same thing.. I was a child who simply failed to thrive. They said I would need a wheel chair, that I would never walk.. And they said I would not live past my adolescent years. When my mother asked WHY I was failing to thrive, they repeated themselves using different words. Of course they prescribed me every drug in the the book to "comfort" me and slow down the process and blah blah blah.. finally, my mother was informed of a different diagnosis. According to this genius, I had childhood leukemia and needed to begin treatment immediately. She literally collapsed. We traveled two states south, to Texas, where I was to be a patient at the shriners hospital for children. I wasnt there 48 hours before a doctor confirmed I was not suffering from cancer.. but I had an unbelievably severe case of Rheumatoid Arthritis. We began physical things that strengthend me, and I must say that swimming works wonders for me! (; anyway, my mother finally worked up the courage to allow these doctors to give me X Megadoses of METHOTREXATE. I wasn't even ten, and I was receiving a megadose of a megadose, twice daily. Methotrexate is one of the drugs used in chemotherapy that helps bring along "remission" although, it does have similar side affects of chemotherapy, due to the large dosage, I could move! I learned how to walk at the age of 6. I could exercise regularly by 7. By 8, I was considered to be in "remission"..
I have broken my right ankle three times. Left ankle, twice. Ive shattered my right shin as well as fractured my left femur. Ive broken both wrists. And guess what? I COULDNT BE MORE PROUD! Today, I am 17 years old and I have never been in a wheelchair a day in my life. I played catcher on a softball team 3 years and even ran on a varsity cross country team in the 7th grade. I graduated this past May, a year ahead of when I should. I have my emt license and I've got my mind on pediatric physical therapy. (;
At 13 years old, during a routine checkup at the shriners hospital, I was given some discouraging information, but of freakin well. Im stronger than this disease. AND SO ARE YOU. I honestly think methotrexate saved my puny little life, and I think it is very helpful to have. My hands may look a little crooked and I may swell up every now and again, but im okay with that. Gives me a reason to have access to the indoor pools WHENEVER I want (; I thought this may help you in some way, I truly hope it does. Thank you for your time. Keep your head up! You are in my thoughts and prayers!
How are you doing these days GalacticWarrior? I was diagnosed 3 years ago and have tried to get well without the medication. Although i wasn't able to walk last year i am still in pain and will give myself 3 more months before i take mxt. I had some bloodworks done and sadly my inflammatory markers remain high...
I hope you and anyone who reads this is well and not suffering too much.
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