What can I expect once Metorexate is started?

Hi. I am new to the site (I have been browsing for the past month) and was diagnosed just before Christmas. I had an accident last May which required a small op on my foot in July - that's when I got my first symptom in my finger, stiffness for a few weeks followed by swollen knuckle. This carried on and at the end of the year the only marker was my raised CRP. Nothing else, so it was a shock. I had a steroid injection and was sent away with the medication literature to read. I really didn't think this was me, surely I was going to get better?! I was fine until March when I woke up one morning witha really stiff neck (have had numerous Chiro sessions) it is slowly improving. However since it started my joints have totally flared up. My hands and knees causing me great problems. I hated the thought of medication, have drastically adapted my diet but have now decided this pain is tough at the moment, I don't want it getting worse. I want my life back. I am struggling to do the usual games with my children and I no longer run or swim.

I have an appt next Monday and have come to terms that I will say yes to medication. I have read numerous posts on side affects, but would appreciate any into on how people reacted\took to Methotrexate.

Once medication is sorted, there still seem to be a number of people who are suffering and in a great deal of pain. This confuses me? Is it because of the damage that was caused before?

Thanks

14 Replies

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  • Morning hevj and welcome to this great site am sorry have been diagnosed, it is such a shock at first isn't it?

    I too was diagnosed just before Christmas and started quickly on mtx......been on it since then. It was pretty horrid for the first few weeks as I felt sickly the next couple of days, but I seemed to get used to it and ok now. I take Folic acid 3 x a week which helps with side effects, people take different amounts of Folic, but your doc will advise.

    It takes up to 3 months to kick in and I had steroid jabs to tide me over, and another drug added for good measure! Finding the right treatment for you can take a while.

    People are still in pain once meds sorted for a number of reasons, main one being as you say from joint damage already done, which sadly can't be undone. There are many on here who have had this disease for years and treatments were not so good years ago. Nowadays the usual is to start treating as quickly as possible to try and prevent joint damaged rather than wait for it to happen then try and treat it and of course the drugs are improving all the time the time. People also can have flares even when the disease is being reasonably controlled, and of course that is the time when they are more likely to post on here for some support.......when all is well and under control I guess they are busy doing other stuff :-)

    Good luck to you and hope you will soon be back to playing with your children x

  • I think Beaches is right in that this site isn't completely representative, so tends to show the worst side of the disease. The NRAS statistics seem to show that the majority of people do ok. A bit like me, but a post that said "I feel fine today" would be a bit dull wouldn't it.

    Took me quite a while for my body to get used to the meds (I'm on triple therapy) and get the dosages right for me. But since then it's not been too bad. I have some pain from damage to my feet that happened while the docs were tutting around before I was diagnosed and put on meds. And I have some pain from osteoarthritis in my back and knees. But the meds do keep the RA pain away 99% of the time. And it was methotrexate that gave me my life back, as could hardly get out of bed by the time I was finally prescribed. So to me it's a wonder drug. I just wish I had been more assertive about getting it sooner before my feet got damaged.

    But it will take several months before you really feel the benefits. One thing this disease teaches is patience. Look at the NRAS site - there are some very positive stories on there.

  • Methotrexate gave me my life back too. Over the years it became less effective so I was taken off it. I'm now due to restart Methotrexate as an adjunct to Humira and I have no qualms whatsoever. I do not like the idea of taking drugs but I know that I need them and I've had remarkably few side effects with any of the DMARDs. I had good energy levels on Methotrexate and felt very well in myself. Thinking back, I did feel a bit queasy and weary for a few days after taking Mtx at first, but that soon wore off. Don't be scared of Mtx - you will be monitored while on it and if it doesn't suit you there are other options.

  • Thank you so much folks. It's is good to hear how you have coped with the meds. Also to know it takes time for it to work. I am not very patient! so Helixhelix, I need to start accepting and allowing things to take their course!

    I am really taken aback at how quickly things have progressed. Also thinking back to my first appt I was offered mtx, but as it was in one finger and not that painful, I was sure they had it wrong!! This tightness, stiffness and pain in my hands with some swelling is obviously a flare up. How long do you find they last? With or without mtx.

    It does make a difference being able to talk to people who know what it's like. My daughters who are 9 and 11 have been super as has my partner. However I find it hard when they ask me if I will be better tomorrow. They have seen how inactive i have become. My eldest has also asked if its catching! I so don't want her to be worrying about it.

    Once again thank you for your replies... I feel positive About the meds, and future.

    X

  • Same thing here regarding how quick it progressed...scary isn't it! Had diagnosis off GP and was put on 18 month waiting list to see rheumatologist. Within a month or two I was in such a state that GP got me referred in a matter of weeks.

    Good to hear you're feeling more positive.

  • Don't want to depress you, but without meds there's a chance that the disease activity you've got right now will just keep on going. Some are lucky enough to have a type of RA that fluctuates, but others (including me) have a type that just slowly and steadily escalates if you don't go for the medication. Once the disease is better controlled then you do get flares, sometimes just a day or a week, tho' can be longer. I only have them rarely now - maybe once a year for a few days, and the occasional rubbish day usually if I've overdone things.

  • I know... It's taken this flare up to make me realise my RA isn't going to go away. I don't want to be brought down by it as I have done the last few weeks. I am no longer anxious if my appt next week!

    Hx

  • Hello hevj,

    I was on mtx for 9 years but had to come off it due to complications caused by another unrelated chronic health condition. It took a few months for it to click in, but when it did, it worked a treat for me and without any obvious side effects - maybe some tiredness. I still had the odd flare-up and dosage had to be increased over the years to keep things under control. When I did stop taking mtx , my rheumatologist decided to see how I got on without any RA medication except for pain killers. Not a good idea!...within a matter of weeks I was in a terrible state and just could not believe how bad my RA was. It certainly made me appreciate what mtx was doing for me.

    Like most folk, I hate taking drugs but what can one do when in acute chronic pain. I've recently been given the go ahead to start Enbrel as my current meds are not working very well. But, due to my other health condition, I have serious concerns about starting it... more than I ever had about starting mtx.

  • Oh I do feel for you. It's a big decision To take any long term medication. Certainly sounds as if you have a lot to consider.

    Good luck.

    Hx

  • When I was first diagnosed I was put on SLZ, when thing progressed and I got worse I was offered the choice of two drugs, one being MTX. I had read so many posts about the horrors of MTX and I had made my mind up that I was never going to take it early into my diagnosis. However, when things got bad I knew that I had to bite the bullet and take it. It is the most used drug for RA and I realised that out of the two options MTX was my best bet.

    I remember the day that I first took it, I had to take three tiny pills. I was almost in tears. I took them and waited for something to happen. Nothing did. Every time I increased the dose I expected some sort of nausea, sickness or the runs......again nothing happened. I ended up taking 20mg a week, with no side effects at all.

    I am now taking Enbrel with it and am In remission have been for over a year, I have my life back.

    Not everyone gets side effects, many people take it with no problems at all. You've got over the biggest hurdle with accepting that you have to take the drugs.

    Good Luck when you take it, fingers crossed you will be fine and feel the benefit quickly.

    Love Paula xx

  • Thanks Paula. I think I have got myself worked up about the side affects, it's good to hear the different experiences. The thinning hair worked me up! We take life for granted. Quality of life is important.

    I am glad to know you have your life back. I never thought it would make me so low in mood, a glimpse of what it could be like if I don't make the step into medicine. I just want to be 'me' again...

    Heather x

  • I tried to avoid the serious drugs for a long time too, and had a gp who is a bit alternative so was trying a different treatment - and I had this idea that because I had been fine, and these things had come on so suddenly, they would just leave as suddenly as they arrived, because as far as I was concerned it was ridiculous (I wasn't really going to be sick, seriously how can you just wake up one day and not be able to walk? As far as I was concerned I was going to 'will' myself better and that didnt get me too far...). We'd gone through a bunch of stuff, and then my hands started to go, and my gp said that's it - you have to go and get yourself on those meds you've been avoiding NOW, and got me an appt within the week. It still took 6 months to sort me out, but now I'm relatively fine. Something I'm very glad to report is that none of the meds had any real side effects (except for a minor skin reaction) - no nausea, fatigue, hair loss etc. The only one that worked however was a biologic - all the others were only minor (or short term) improvements. Good luck :)

  • Oh my.... You have just stated how I feel! However now having made the decision I can't make it better on my own I am looking forward to my appt on Monday.

    I suppose the next stage I will have to go through is learning patience! It's not going to be a quick fix...

    Thank you x

  • Hiya HevJ & welcome. Just throwing my experience into the mix! I was diagnosed in 2008 & was immediately started on corticosteroid, celecoxib, hydroxychloroquine & co-codamol (took this as necessary). When these alone weren't controlling my RD methotrexate was added, first tablet & later injection. I was willing to accept anything to give me some sort of life back & it did. My other meds were obviously doing something but without the MTX as support not controlling it fully. I'm still on it & do fine. I do have find more hair in my brush than I did before but if I keep it reasonably short & with a good cut it's not noticeable. I do get the odd flare but it's usually when I've overdone it when feel on the better side (I'll never learn) & it's the nature of the disease.

    Hope you're able to make an informed choice, it's a facer I know but getting on the right meds sooner rather than later the better for your future.

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