Life without Methotrexate?

[SARAHG]

I just wanted to ask if anyone is on biologic drugs without taking Methotrexate. I inject Enbrel/Etanercept once a week and I'm supposed to be injecting Methotrexate once a week also. I have taken the Methotrexate on and off for the last 3 years. It makes me feel ill......very tired, lethargic and sick. I work full time and I am now in my 3rd year at college in the evenings. I've tried switching around when I inject but I cannot find the right time to feel awful for a couple of times a week. After 2 years of not being able to do any exercise I have just started to try and get back in to it. Not easy but little and often. I have stopped taking the Methotrexate now but I am continuing with the Enbrel. Am I kidding myself or can I actually try and make this work? Pain is bad but feeling ill every week is worse. I would really appreciate your views. I wish this stupid disease would just go away!!!

[earthwitch]

I'm a bit puzzled why so many doctors seem to want folk with RA on both MTX and biologics, though I have to admit I don't have RA - I have spondyloarthritis. From what I understand, it is useful to take MTX with remicade, as that helps to stop allergic reactions to the remicade, which is a biologic that people can become sensitive to. The risk of allergic reactions to other biologics is nowhere near as high so MTX isn't required for that reason. I was under the impression that biologics, if they worked, would work on their own, though as I say, I don't have direct experience with RA but with another type of inflammatory arthritis.

I think it would be good for you to actually directly ask your rheumatologist why they think you need to be on MTX as well, and also ask whether Enbrel would work well enough on its own. Ask them what evidence there is for using Enbrel on its own, and what evidence there is for increased effectiveness if taken with MTX. That way you can make an informed decision about it.

[Karen77 in reply to earthwitch]

From what I understand, biologics are proven more effective in combination with DMARDs. I always saw my immune system as my body's "armed forces", so I look at it that MTX has reduced the overall strength of my armed forces, and Humira is attacking my "army." Other biologics attack other parts of my armed forces, so if the Humira doesn't work then Enbrel (navy?) or Remicade (air force?) will be tried. But they all benefit from MTX holding the gates open...

[cathie]

AS you can probably see, I am about to come off enbrel as it hasn't made me better. I was ono methotrexate + infliximab (remicade) for about 9 years and it worked well. Had to come off it because of liver damage, down to methotrexate. I was told by the clinical pharmacist here that she didn't think lefludomide would work in the same way with enbrel as there isn't as much likelihood of rejection. But some people do take one or other of these meds to boost enbrel - but not it would seem, in the hospital I attend. So I agree with earth witch basically.

Enbrel doesnt seem to have worked for me though.

[farm123]

They do say that biologics can work better taken in conjunction with MTX but my body will not tolerate it and I had 7 years on Enbrel without it before Enbrel failed. I think you do need to speak to your rheumy team as unfortunately this disease will not just go away but finding the right mix of treatment to suit you does take time. Enbrel may work for you alone but you may need to add another DMARD if you find MTX gives you too many side effects and these decisions need to be taken in partnership with your rheumy team. Farm

[Pands]

Hi, I have been taking MTX on and off for 15 years now. The last 7 years also with Humira. For the last 2-3 yrs taking the MTX has made me feel so grim, literally like I am poisoning myself! Rheumy lowered my dose from 25mg down to 15mg during the last 18 months but I still feel dreadful for days on end.

Then earlier this summer I had to come off the MTX as my neutrophil count was affected and it took a while for it to get back up again. I had no MTX for about 4 weeks and felt so much better in myself. Was told to go back on it and felt grim again. So as it was the summer school holiday as and I was away and kids off school and needing me and being on holiday I made the decision to not take my MTX and since mid-July. I haven't seen any sign of flare (yet) and in fact being on holiday (warm! - in south France) I felt less stiff and less cracky than I had done in a very long time. Oh and not rough and ill and grim all the time.

Sorry long post but I am in a similar position. I an seeing my rheumy in early Oct and will tell him what I did. My bloods are fine, in fact nice and level. I think I will be told to stay on the MTX but I am hoping for some understanding from my Rheumy as he has always been good. Best wishes.

[Karen77 in reply to Pands]

I think stress is a huge factor so with being on holiday and enjoying nice weather, your RA may simply be less active. It would be nice to be off the MTX though; I've always hated taking it. Sometimes I wonder if it's a necessary or unecessary evil! Lol. I'm sure in any case, it's good to give your body a break. I ditched it for a few months earlier this year, but by the third month my symptoms had gotten much worse, so back to MTX. My memory is shot again, but at least I can open the honey jar

[allanah]

I have never tolerated mtx so have had all my biologicals with Sulphasalasine or leflunomide . The doc only said mtx helps the biologics work but is happy to use another dmard as it really made me sick. Xx

[petalnumber2]

Hello Sarahg,

I was on MTX for 3 year

s and and Enbrel for the past 15 months, and I made a decision along with rheumy clinic nurse and my GP to stop MTX altogether because of adverse reactions.

So, I have been on Enbrel injection once a week for the past 3 months and my ESR is now normal at 6. I had an appointment with the clinical nurse on Friday just gone and asked her if Enbrel is working better for me on it's own ? She said, "the overall evidence shows that Enbrel works better backed up by MTX, but there are variations to this rule".

Taking into consideration that it takes about 3 months for MTX to leave the system, perhaps I have yet to discover any problems ! so, she said "if you start experiencing swollen painful joints give me a call and we will try you on a small amount of MTX again". I was on 22.5 mgs when I stopped.

My thinking is that we are all different and our reactions to any kind of drug is different. So it seems to me it is all about ongoing trial of the different drug treatments which can be tweeked from time to time.

So Sarah, Enbrel alone might work better for you as it is for me (at the moment).

Talking of execise, the clinical nurse talked to me about it and advised me to start walking small distances regularly every day timing myself and aiming to reduce the timing each day. I'm talking 50 mtrs to start with. Also she suggested Tai-chi, which I'm going to look into. (I have'nt walked through the very small village which I live in for over 3 yrs, because I have a lot of damage to feet and ankles and walking is difficult for me, as I'm sure you can understand.

Sorry for long message, but I hope I have helped a bit. Take care June x

[Esteratsky]

Hi Sarahg, have been on Enbrel 2 x 25mg twice a week for 10 years and then swapped for the click pen which was less painful 50mg x 1 week. In the early days did try Methotrexate but made me feel ill and my consultant dropped it. It has become a habit injecting myself every week and there are times that they do not work and I have to back up with paracetamol tablets. I don't really think there is an outright cure for arthritis ~ when the pain gets too bad I have to get a booster of a steroid shot in the butt LOL!

Wish you well.

[Beverley-NRAS]

Hi SarahG,

I've just put a link to a short article on our website about this that you may find useful:

nras.org.uk/biologic-and-or...

Some anti-TNFs must be given with methotrexate and some can be given without if necessary.

Hope this helps.

Regards

Beverley (NRAS-Helpline)

[SARAHG]

Thanks everyone for your views and thoughts. I have an appointment in October so I will talk it over with them then. I have been on and off both in the last 18 months due to an operation and infections. My RA has been very up and down and particularly bad over the last few months. In the last 2 weeks it's started to settle down again without the Methotrexate and just with the Enbrel. Who knows what will happen in the near future with this random and unpredictable disease but for now I am not going to use Methotrexate as I cannot handle the side effects. I feel I've received more information form here than I have from Rheumatology so thanks you everyone. xx

[Tessthomy]

Hi Sarahg I'm the same as allanah above. I've been on mtx for about 4 years with similar experience as yourself, along with embrel for about 3 years..

The last visit to the consultant he asked if I wanted to come off mtx, (even though my symptoms were under control), I said "yeh too right!" So he then said embrel does need 'boosting' with a DMARD. He has given me sulphasalazine, which I used to take on its own in the early days about 7 or 8 years ago but it stopped working.

My consultant has said that along with the embrel this DMARD could start working again. I'm so relieved to be off the mtx but I have to say I have more general pain .. In my hands and wrists mainly.. So can tell the mtx was working well with the embrel I just am so glad to be off it as my quality of life is better without the sicky tired weird feeling I got while being on it..it felt like poison even though it helped my RA.

I now take more painkillers to help with the flu like symptoms and any residue pain ..the feeling of trudging through treacle is better than constant unpredictable nausea in my opinion.

With this disease with are all stuck between the devil and the deep blue sea. It's confusing and complex,I hope you find some respite from it all. Good luck TT X