Methotrexate - am I getting better or just adjusting to the medication?

Methotrexate - am I getting better or just adjusting to the medication?

Hi I'm 13 weeks in on methotrexate 15mgs and see the rheumatology nurse this Friday for review

This week I've not been as tired ( I'm managing to be up a good 8 hours) and I can think more clearly so am I getting better?

I didn't take any painkillers today and my hands and feet ached much more - so not much improvement there

So do I ask for an increased dose of methotrexate or another RA med to be added as I think having two drugs reduces the chances of joint damage..

I really don't know what to say for the best - help!

(And having read this back to myself, I'm not that sure my thinking is that much better 😜)

14 Replies

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  • Hi Barb66,

    You are just into 13 weeks of methotrexate, you need to give yourself more time to let the medication to work on you. At the beginning of mtx, I did feel very tired for many months. Beside that, I felt very cold even during the day, bear in mind Malaysia is a tropical country and the weather is hot here.

    When I read that double or triple DMARDs would help to speed up the recovery process, I asked my rheumy about that. She said that based on my RF and CCP and X-Ray image, I did not need that yet. I was on mtx and prednisolone for 6 months then slowly got rid of prednisolone. Another 6 months down the road, my rheumy said that my recovery should be faster hence she added Leflunomide for me. That is where the double agents started until today. But before that, I was already 80% back to normal though I still felt the slight pain then.

    During the 1st year of my treatment, each time I visited my rheumy, I would be given additional 5 mg of mtx to continue and I felt very much better after each increase in mtx. I started with 10 mg of mtx and went up to 20 mg eventually. Then instead of giving more mtx, my rheumy added in Leflunomide for me. Now I am in remission so it is all up to what your rheumy's plan for you but it is always good to express how you feel. It is very important to work closely with your rheumy and trust him or her.

    I was only telling you my own experience, good luck and I hope you will be into remission soon too.

  • Thank you Amy ithat's so reassuring to hear

  • Back in the early summer last year my consultant reduced my mtx from 8 to 6 and he ended up before christmas putting it back to 8 and adding hydroxy to the mix and i am now painfree in my fingers. xxxxxx

  • That's great to hear Sylvi

  • We'll it's great that you are starting to see improvements after only 13 weeks, as the methotrexate may only just be starting to work as it takes months to build up. If the photo mean's that you can take a bath then that's even better! It took me much longer to be able to get in and out of a bath!

    Everyone is a bit different, and rheumies have different practices. But for me I was just on MTX for the first 6 months, and steadily improving over that time. It was only when it became clearer that the improvements had slowed down that another DMARD was added in ( and a third six months after that). I was happy to wait as with every extra drug comes extra risks. Plus I didn't want to use up all the weapon's in the armoury unless I had to. Since you are already on a DMARD, and it's having some effect, then the risks of joint damage are already much, much lower as your disease is already less active. Talk to your nurse of course, and ask her opinion, but to me you don't need to make that decision yet.

  • Thank you Helic I'm always one to rush things and you're absolutely right it's early days yet.

  • Not surprising tho' that you want to move forward quickly. You've been waiting months and months for things to improve and now they are it's very human to want it all better NOW. YOu'll get there.

  • That's exactly it Helix 😂

  • helixhelix is right, I couldn't of said it better. We all want the meds to work RIGHT NOW!!! ...lol....time just

    S E E M S to D R A G on and on waiting to find the right drug to make life fun again.

  • Life and fun would be really great xx

  • I understand how you feel Barb66. I started to feel a draining of fluid sensation(??) and improvement on week 9. I just assumed I would be in remission the next day! Well, I will be taking my 24th dose this coming friday, and I am almost back to normal. Give yourself time....you'll get there :)

  • Firstly, love your tootsies! Sounds good, you seem to be responding to MTX but give it a little longer, be a bit more patient (I know but RD demands patience) & you will hopefully see more improvements as the weeks go on. My philosophy, or rather I learnt, after a few weeks of being diagnosed was to be guided by my Consultant because he knew this disease far better than me, & the best way to treat me with all the imaging & figures my body had supplied to him. I was a real novice in the beginning, within 2 weeks I'd been diagnosed started my meds but I'd 3 months before my initial Consultation. I knew nothing so read everything & naturally I had information overload so I stopped & wrote any questions I had down on the longest list to ask so I could receive the answers I needed from a human being. Bless him, once the business stuff was out of the way my Consultant answered every one & gave me homework, in the form of lots of reputable websites. I learnt more from him in approx an hour than the three month lead-up to my appointment.

    Just for comparison, I stayed on my first DMARD, hydroxychloroquine, for a year, my dose couldn't be increased & I'd needed a couple of short courses of corticosteroids so MTX was added. HCQ & MTX didn't work for me so the HCQ was stopped the MTX increased & then I saw real results. Now, 8 years later, I'm still on MTX but with leflunomide plus NSAID & corticosteroid. Do always bear in mind though that my experience won't mirror yours or anyone else's, as much as we are unique so is how the disease affects us. There are so many peculiarities of the disease too, how aggressive it is, whether you're seropositive or seronegative, if we have any comorbidities & of course we each respond to the meds in our own way.... you get the idea!

    It is a big positive though that you are seeing changes, albeit not in every joint, that holds well for you. 🙂

  • Hi Barb66, I like you are new to this horrible disease and this is my first post, my time scales are similar to yours. I initially paid to a private doctor and then to see my consultant as I could not get an appointment with my own doctor. As I was going on holiday in August last year and my hands and wrists were so swollen and painful the consultant gave me 2 steriod injections to help whilst away and to tide me over until she then got me onto her list. I have been on MTX 10mg now for 14 weeks and can't believe how much better my hands and wrists feel.

    If I try to do lots of work involving my hands then I do start to get that feeling back in my knuckles. I am lucky that I have been able to change my jobs at work so I don't have to overwork my hands as previous. My tired days have gotten so much better, I have days when I feel cold and I am normally a hot person but on the whole I feel so much better. I do appear to have a problem when typing words get mixed up and spelling is sometimes just weird. I've just had my 3 month consult and the consultant has said I had no RA antibodies showing in my blood test although my white count was going down so that is being monitored more closely. When I was first diagnosed I was so angry, frustrated and frightened as to what the future would hold for me. I now thank every day that my hands and wrist don't hurt and now have the attitude of live for today who knows what tomorrow will bring.

    I hope you carry on seeing changes and it continues to do so for all of us. xxx

  • Hi barb ..nice feet wish mine looked that good😣yh give your drugs time I felt so tired too and looked pale I'm on mthx and hydroxychloroquine I still get nigglingpain in hands and joints but so much better than I started a year ago ....my feet are the ones playing up at moment very inflammed and sore joints and im on my feet all day at work but I still can get about and live a semi normal life so I am grateful for that ...hope you get on ok .

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