Seven weeks in...

[Glyn612]

Hi, I'm on week 7 of MTX and have absolutely no benefit whatsoever from them yet. I know that they can take between 3 and 12 weeks to kick in but has anybody else taken this long to get an effect from them? I would have thought I'd feel some kind of improvement, even if small. The only thing that really worked for me was a 3-week course of steroids in the summer. I'm taking tramadol regularly for the pain.

[Beverley-NRAS]

HI Glynisdyson,

so sorry to hear that you are not feeling any benefits yet. Do stick with it though. We speak to many people on the helpline for whom it took a while for the benefits of their DMARDs to kick in. It may be worth contacting your rheumatology team and having a word with them. I do not know what dose you are on but just to let you know that it can be a bit of trial and error in the early days finding the right dose of methotrexate for you. Rheumatoid arthritis is one of those conditions that is different for everyone and as such there is no one right treatment or dose that works for everyone. If you would like to talk more about this please feel free to call the helpline on:

0800 298 7650 Monday - Friday 9.30am -4.30pm

Regards

Beverley

[Glyn612 in reply to Beverley-NRAS]

Thanks Beverley, I'm on 20mg at the moment having worked my way up in the first few weeks from 10mg. So I think I'm on maximum dose. I've got an appt with rheumatology at the beginning of December, which is when I'll have a discussion about the effectiveness of the drug. Actually, I've had one appt already with the rheumatology nurse, who was in the habit of checking her watch every few minutes, which wasn't very conjusive to talking about things in a confidential or relaxed manner. I think she was more concerned with keeping appts to within their time limit than actually being concerned about my condition. Perhaps I'm being unfair as I know they're very busy and otherwise wonderful people; I wanted to change to another nurse but was told to speak to them directly, which I'm reluctant to do for fear of upsetting my current nurse. In any case, I have an excellent doctor, who has said that he'll refer me back to a shoulder consultant should my shoulder pain continue. I'm wondering whether I have ankylosing spondylitis rather than RA because I have a lot of ankle, shoulder and lower back pain. However, my doctor said that I would probably be treated in the same way in any case - although I do wonder whether biologics would be more effective for my condition after doing some research. However, I also understand that we need to be given DMARDs initially to see how things go. I'm worried that in the meantime my joints are suffering unnecessary and irreversible damage in the meantime. Short of going privately for treatment, however, I guess I'll have to wait and see. Thanks again for your reply. Glynis

[Beverley-NRAS in reply to Glyn612]

Hi Glynisdyson,

well that's good that you have an appointment in December. Hopefully you will be able to be assured of a definite diagnosis one way or the other.

There are strict guidelines for the use of biologics issued by NICE and you have to meet these criteria before they are able to be prescribed for you. One of these is that you must have tried at least 2 standard DMARDs of which one must be methotrexate and they have not worked for you. You can have a read about this in our publication on biologics. I have put the link below for you if you would like to have a look:

nras.org.uk/publications/bi...

Hope you get yourself sorted,

Best wishes

Beverley

[Karen77 in reply to Glyn612]

I understand the max dose is 25mg. That's what I am on, currently via subcutaneous injection.

[cathie]

You might also find it useful to know that even if mtx doesnt work well on its own it can sometimes go well with a biologic/anti-tnf. This worked for me. I hope you get somewhere soon!

[Glyn612]

Thanks Cathie. I was on sulphasalazine for 18 months but it gradually stopped working. I've been on MTX now for 7 weeks and know that I'll have to use it for at least 6 months before they consider putting me on anything else (at least that's what I've been led to believe), which is a bit of a depressing thought. However, I'll bring up biologics with my rheumy when I see her in December. Thanks again. Glynis

[nomoreheels in reply to Glyn612]

I'm sorry to hear you haven't noticed how well MTX can work at controlling RD yet Glynis. You may find this link useful pathways.nice.org.uk/pathwa...

I hope this helps you.

[Glyn612]

Hi nomoreheels. For some reason I can only see part of your reply. It gets to halfway through the website address and then stops. Not sure why that has happened although in a response to somebody else's post a few weeks ago she could only see half of my reply to her post. Would you mind resending? Or does that mean you have to retype all over again? Sorry about this...

[nomoreheels in reply to Glyn612]

It's appeared as I typed it Glynis. I know what you mean, it does look like an incomplete message because the pale blue text is a link & if it's a long web address the whole address doesn't appear. What I'll do is add a note at the bottom of the original & edit so hopefully all will become clear.

[Glyn612]

Hi nomoreheels. Got it, thanks. I'll give it a good look later when I've finished work. The problem I have with all this is having to wait 6 months if MTX doesn't work - and that's 6 months more pain and joint damage. Oh well, I have the tramadol I suppose. Thanks again.

[nomoreheels in reply to Glyn612]

With any luck it'll kick in soon Glynis so try some positive thinking rather than assuming it won't work. Similar to sulfasalazine MTX can take it's time & the likelihood is it is working it's just you can't see or feel any difference yet. If you feel you can't cope & there's still no improvement before you see your Rheumy next month why don't you ask your GP if he can prescribe an another pain relief med or NSAID rather than increasing the tramadol or alternatively ring your Rheumy nurse & explain how you're feeling, she may offer you a steroid injection or short course of oral steroids. Being in pain is no fun & will start to get wearing the longer you have it.

Do you hold a drug monitoring record book? If you do or have access to your blood results just see if you notice a reduction in your ESR & CRP levels, that should indicate whether the MTX is having any effect.

[Glyn612 in reply to nomoreheels]

Thanks. I do have the bloods but only have one reading so far as the first readings were missed so nothing to compare. However, I'm emailing my doctor later today to get my most recent blood results so will compare then. xx

[nomoreheels in reply to Glyn612]

Ok, I would also ask if he could prescribe something for the pain you have, maybe an NSAID or a short course of steroids, but if you explain the type of pain & where it is he'll know what would be best. Tramadol can be useful but there are alternatives that should be better for you.

I hope you notice a reduction in your blood levels!

Did you find the link helpful?

[Glyn612 in reply to nomoreheels]

Thanks yes, I did. I'm already taking meloxicam for inflammation and recently took a short course of steroids that did the trick. Fingers cross the MTX kicks in soon.

[nomoreheels in reply to Glyn612]

I started on meloxicam back in 2008 (15mg daily). It's a COX 2 inhibitor & worked on my pain & inflammation for about 3 years but when it became less effective my Consultant changed it to Arcoxia (another COX 2 inhibitor - etoricoxib, 90mg alternate nights) which I'm still taking & it keeps my RD swelling at bay. It's difficult to say if it's as effective on my pain at the mo as I have hourly release buprenorphine patches for OA pain which is covering everything! Steroids can be incredibly useful & usually do the trick but unfortunately don't treat the symptoms. I still remain on them, low dose daily, but need a review at my next appointment to find an alternative way of stopping me going into flare when come to the end of tapering!

Have you been able to compare your ESR & CRP levels yet? I hope you find they're lowering.

[Glyn612 in reply to nomoreheels]

Interesting that you should ask that. I've got my blood monitoring record in front of me because the doctor sent me the blood report this morning. Unfortunately, although I've been able to fill in most of the figures, I don't know what the CRP and ESR figures are on the report. Could you advise? Thanks

[nomoreheels in reply to Glyn612]

The ESR is your erythrocyte sedimentation rate & the figure should be between 1-7 mm/hr & the CRP is your C-reactive protein & the figure should be lower than 6mg/L. (Assuming the lab where yours are analysed work to the same testing system as mine).

They're both tests which indicate levels of inflammation & a good guide of how controlled you are. The higher the figure the less controlled the disease. You may find that your figures aren't within the parameters but don't worry, it'll be because you've only been taking MTX 7 weeks so may well be raised., especially if you're presenting swelling.

I hold my own drug monitoring record book & it's very useful as I can see at a glance any changes.

[Glyn612 in reply to nomoreheels]

Hi, I can't see either of those figures on my report. My MCH level has gone down since my last report two weeks ago and is now within the parameters but my MCV level is still raised, but down on last time. Everything else seems to be within the parameters.

[nomoreheels in reply to Glyn612]

They're your red blood cell levels. Do you have a PV result? That also gives an indication of inflammation. It's possible the lab analyses plasma viscosity instead of ESR, it's a newer test.

[Glyn612 in reply to nomoreheels]

Hi my RBC is 3.9, up from 3.8 last time. According to my record card, CRP, ESR or PV may be required 3 monthly, so maybe I haven't been tested for that yet.

[nomoreheels in reply to Glyn612]

I do wish they'd do one test for all of us, it would make it much simpler!! My ESR & CRP is tested in each monthly bloods, hence the misunderstanding.

[Glyn612 in reply to nomoreheels]

I have an appt with my doctor in two weeks and will bring it up with him then. Thanks again for all your help.

[nomoreheels in reply to Glyn612]

No probs. Good luck.

[justlizz]

Hi dont give up yet its taken me 3 years of MTX worked up to 25mg tabs then on to 15mg injection due to vomiting but after 3 yrs my bloods are almost normal and for the firt time in 3yrs I have a 5months before I go back to hospital except for bloods the Rheumy must have got fed up with me as it has been every 6 weeks seems at times I was living there I did ask for my own parking spot at one time so it might be slow but it does work in the end

liz

[Glyn612 in reply to justlizz]

Thanks justlizz. I've had lots of good advice since my post and it's good to know that I'm not alone. I'll give it more time and stop moaning. Take care xx

[Karen77 in reply to justlizz]

Wow. You stuck with MTX for over 3 years of it not seeming to work before seeing benefits? I'm surprised by the commitment! Glad that you are at least seeing some benefit now.

[justlizz in reply to Karen77]

Hi Karen there was very slow progress I went from not being able to do anything not even pulling my knickers up and it has taken me 3 years to get around as normal I did have a knee replacment in the middle which set things back

liz

[fear-of-nothing]

Good Morning Glynisdyson,

I too started Methotrexate along with other meds 8 weeks ago , new diagnosis to RA. For myself the swelling in my feet have gone but the pain is still there bearable to say the least. However I found when they decreased the prednisone the pain all came back very quickly so thankfully I called the RA dr and he put me back 20 mg of it and it seems to make things tolerable . As much as I do not want to be on steroids long at least I can wear shoes. I feel for you because I too want to be back to my normal self and for this to just go away and fast. Hard to be positive about something when you are not feeling or seeing good results. Wishing you some comfort soon, Amanda.

[Glyn612 in reply to fear-of-nothing]

Thanks Amanda. Let's hope the MTX starts to work for both of us very soon.

[Karen77]

I took MTX from January 2012 to August 2012 with NO improvement, and only a worsening of symptoms, until I started taking Humira in September 2012. Felt better within days of taking Humira. I'm still on MTX though as my rheumy is convinced that the MTX is helping the Humira to work.