Does everyone start with Methotrexate?: I am fairly new... - NRAS

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Does everyone start with Methotrexate?

wendywoo profile image
14 Replies

I am fairly new to this (very helpful and friendly) site and having read quite a few posts find that MTX is probably the first line of defence. I was immediatley put on to this plus one other as the nurse said a combination works better. I was given 15mg a week, 6 tablets, which resulted in headaches and a fuzzy feeling, so on my own decision, I decided to take 10mg, 4 tablets, and this suited me better. I rang the nurse and told her what I had done, and she said that if it suited me better, then that was ok. It still kept the pain away, so sometimes I think we have to read our own bodies, obviously the headaches were telling me it was too much.

Will there come a time when MTX may not suit me and I may have to try other medication, is this how it seems to go with most people?

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wendywoo
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14 Replies
Victoria-NRAS profile image
Victoria-NRASPartnerModeratorNRAS

Hi Wendywoo

You are correct in saying that MTX is the most commonly prescribed DMARD, and usually the first drug given, though sulfasalazine (SSZ) is also often given.

The reason MTX is most commonly prescribed is that it is referred to as the 'gold standard' for RA meds, so is very effective with a good safety record, though obviously no single drug is good for everyone. It is also the only drug named as one that you have to have tried before you can start on the newer, 'biologic' drugs.

To answer your question, you could stay on MTX for the foreseeable future, but there may well come a time when it is not working well enough in controlling your RA. Changes in medication are common with this disease and it can often take a bit of trial and error to find the drug or combination of drugs and doses that work best for you. Having said that, because MTX goes very well with other medications, a lot of people are able to stay on this drug, but might add other drugs to it at various stages, including the biologic drugs.

If you ever want to talk about medication or anything else regarding RA in a bit more detail, you are very welcome to call our helpline team on 0800 298 7650 (available Mon-Fri 9.30-4.30).

Glad to hear you are finding the site helpful and friendly!

Kind regards

Victoria

(Helpline & Information Coordinator)

wendywoo profile image
wendywoo in reply to Victoria-NRAS

Thank you vicky for your very helpful reply and support, it is very much appreciated.

Wendywoo

I was started on Plaquenil & then sulfasalazine was introduced, at first it started to work but now it isn't being effective. I go back on Monday to see the consultant & hope he'll give me something else. I'm fed up with being in pain & feeling wrecked most of the time!

aquariusbel profile image
aquariusbel

I have had R/A since l was 12 yrs old and only started MTX last year. I have been on sulfasalazine now for 18 yrs and before that something else which did not work. These are not pain killers by the way. They are there to help control your condition. If you are in pain you will have to find a pain killer that suits you or go to your GP.

julieporter profile image
julieporter

Hi

I have been on MTX for 6 years ,currently at 25mg injections which are now no longer effective so i'm waiting to be assessed for anti -TNF treatment.I've had no real problems and i've had 6 good years of MTX treatment so can't complain .

Julie x

allanah profile image
allanah

Hi

I started in March on MTX and agree with what you say about reading your body and "knowing" how you feel. I reduced the dose with permission and changed to injection type but they agreed with me I did not suit me. Try not to worry I hear the staff often have to change doses and drugs until they get what is right for YOU.

MTX does suit other people though and keeps them very well, so keep well and rest, and use your pain killers as prescribed. Remember to keep in touch with the Rheumy staff (I often get advice just on the phone) and the NRAS helpline is great. Axx

susanh profile image
susanh

Hi

I have been on Methatrexate for 3 years. I have experienced sickness and headaches. I was on 8 tablets. I did what you did and knocked it down to 4 but I am now on 6 which seems to suit me

Remember it is your RA but always take advice

Hope you keep well

I agree about instincts about these drugs and also find it comforting to know that we are monitored closely so I don't worry unduly that I will be endangered by the MTX. But I was having trouble with raised liver function at 15mgs so have been reduced to 10mgs until my liver settles. When i phoned for latest results and was told to stay on 10mgs i expressed frustration as I wanted the stuff to start making a difference. The GP pointed out that my liver is too important an organ to compromise so she told me to just be patient and that put me in my place.

Now worrying that my liver might come to harm. If it's not normal next week then I'll ask to have it reduced back down to 7.5mgs where I started as that seemed to be okay re bloods. The good thing is that it does seem to be making a difference now after 8 weeks so I'm feeling positive today and hope I can maybe get up to 15mgs in time.

What's the other drug you are on? I'm only on MTX - tried Sulpha but it was no good for me. TTx

wendywoo profile image
wendywoo in reply to

Hi Tilda, Thanks for replying. Yes you must look after your liver, I have monthly blood tests to keep a check on mine. The combination I am on is MTX and Hydroxocholoquine (think I spelt that right) plus one folic acid tablet a week. I take 4 MTX on Monday, one folic on Wednesday, and 1 Hydrox per day. It seems to work for me, although it did take about 8-10 weeks to kick in. You have to find your own level with the tablets, personally the lesser amount of tablets I take, the happier I am.

Lots of love to your liver...

Wendywoo

I was on steroids alone for a while after seeing rheumatiod doctor I was given Sulfazazine too this didn't agree with me was put on methotrexate this in pill form also didn't agree with me so switched to injection form 25mg this didn't reduce ra enough so was also given enbrel this caused repeat infections so was stopped I couldn't take a few off the other drugs due to eye problems so rituximab was next for me so giving this a go now its been a long journey with little or no control over my symptoms but I have good support both at home and here online.

Hope mthx continues to work well for you

wendywoo profile image
wendywoo in reply to

So sorry you have had a rough time finding the right meds. After reading these blogs, lots of you have suffered so much, I feel very lucky really as the methotrexate and Hydrox has worked for me. This site is a great help and has helped me understand a lot more about RA and how many many people suffer from it in all sorts of ways.

I wish you lots of good health and pain free times for the future.

Wendywoo xx

in reply to wendywoo

Thanks Wendy,

really pleased your meds work for you, Im hoping rituximab is my drug! take care

Julie x

sciqueen profile image
sciqueen

Hi

I started on plaquenil and then mtx was added a month later. I think if you tolerate it, mtx is a good drug both on its own or in combination. I think most take it in a combination. Well that what it seems like to me on here. Not everyone is on it, and there are other drug that do similar job as mtx, just an alternative really.

I've included a link detailing the different dmards that they are:

nras.org.uk/about_rheumatoi...

If the side affects become an issue, then you can usually reduce them by taking injectable mtx. I have recently transferred onto this method, as the side affects after taking 6 tablets made be very sick. All of the sickness is virtually gone now using inj mtx.

Sci x

I was given sulphasalazine before methotrexate.. this definately didnt suit me and unfortunately in my case afte a while methotrexate didnt suit me either, most people get on with it ok however with good results, ehich is why as Vicky says it is the gold standard or " base line with which other drugs are compared x

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