Anyone on Enbrel alone as mono therapy?

I just wanted to know as I have been on 25mgs sub cut MTX and don't want to stay on it. No one advised me on stopping and I simply didn't take MTX last week in readiness for my first Enbrel shot yesterday. This is because I agreed to take Enbrel in an injection clinic and wasn't advised re stopping the MTX. I did say I wanted to stop the MTX as it wasn't doing what it should anyhow.

I know often MTX is reduced right down over time when in a combi but my nurse says Enbrel is the main biologic which can be used alone which is why I chose it to be honest. So I didn't have to have that high dose MTX. Or ANY MTX. If I had discussed Enbrel in the regular clinic I would have been able to sort this. Just another of many hurdles I have had on the Enbrel path, but at least I have had my first one now. I am waiting to hear back from the nurse.

Neonkitty Xx

24 Replies

  • hi kitty

    my rheumy nurse , said i need to take MTX along side enbrel , because its often found to help the enbrel ,, it maybe doing some good .. even though MTX didnt ever really do much for me .. the nurse still wants me to take it .. just in case its helping the enbrel work so well ...

    i see her for the first time , in two weeks time ,, for the first time , since i started enbrel . and this is one of my major questions ,, i dont want to be taking it , if its not really doing anything ..

    i find it abit like ,, we dont know which one is working ,, so just take them both .. thats easy for someone to say , who doesnt after take the blooming stuff ... good luck with enbrel .. :)

  • Thanks Andy, I feel exactly the same as you. I have a blood test to do before week four but not scheduled to see Consultant till end of

    July. Do I really need to be on MTX 25? I hate the thought of such a Hugh dose MTX as well as Enbrel. Good luck with your Enbrel. I do hope it will work for

    me. I am so limited in mobility. Can it make you feel bad taking the two at once? Have you found any problems, Andy? Thanks anyhow.

    Neonkitty x

  • hmmmm .. thats tricky to answer ,, i space them out ,, MTX monday ,, enbrel thursday .. so ive never taken both together .. since i started enbrel ive felt 100 % better pain wise .. still feel tired all the time though ,, and totally whacked out .. i did get a funny throat / tongue , when i first started enbrel . very sensitive ,, especially with warm drinks ,, thats gone now .. thankly ..

    only little thing i ve noticed ,, is when i wake up in a morning ,, feel abit like im hungover ,,sometimes , like ive had a night on the booze ,, which i havent of course ..

    so id after say ,, no i dont think it does ,, really .. looking back to how i was before enbrel ,, im not complaining .. i can deal with a slight headache and feeling tired .. the only thing that does worry me ,, is ive never had a blood test , thats hasnt had to be repeated since i started enbrel ,, always the second blood test come s back fine .. touch wood it stays that way .. alt ,, wcc ,, potasium ,, iron ,, ive had the lot .. before enbrel i never got called back to repeat .. BUT ... my GP has changed , and im told from rhe nurse ,, hes abit keen ,, anything even slightly out , he wants it repeating .. so it could be the new GP whos just making sure ,, where my last one just let things go by ... xx

  • Hi Andy, thanks for your reply and answer. I have to say that since the onset of RA many years ago I constantly feel like I am hungover most days.When did you start your Enbrel? I had my first on Monday and was told to have a blood test just before my fourth shot. That will be three months since my last one when I have that blood test on 17 May. I am not sure after then how often they want me to have one. I would have thought each month early stages of biologic, or do they then leave it till three months? Seeing the Rheumy nurse next week so will ask her then.

    One of our GPs is very keen if anything out of synch and phones you. As long as they are coming back good second time. Good luck for your three months review!

    Julie xx

  • I have often been recalled for a repeat blood test and the second one was fine. I found out that the times I was called back was when one other Dr in the practice read my results but my own GP knows what to expect and what is acceptable. Always better safe than sorry so I am grateful to be watched over so well.x

  • it is on my wish list and I CAN assure you it can be used without methotrexate x

  • Thank you Summer. I do hope SOON for you, I really do. I am worried if I ask to come off MTX they will see me as being obstructive. when is your next review?

    Julie x

  • june 3rd, but wont prob have scan done by this date!! dont even ask it could be xmas!!, as non appearance of scan means appoint has to be cancelled!!

  • Oh. Summer, I am very sorry they are so slow. :-( I have just had insanity on Enbrel delay and know how it feels to be left "pending". If only they could all liaise properly with each other.

  • Hello

    I have been using Enbrel only for a few years now and it has proved very effective for me. I did begin the medication alongside MTX but because too many infections followed I asked if I could try Enbrel on its own.

    However, Enbrel may not be effective for several weeks - for some there is an immediate improvement for others it takes longer - so if the MTX is helping to a degree may be it would help you over the start up period on Enbrel.

    The combination of MTX and Enbrel was found to be the most effective during extensive drug trials - that's the main reason for using it together. For some of the biologics MTX is also used as it may help prevent allergy to the drug but I don't believe that applies to Enbrel. This you could check with the helpline at NRAS.

    Enbrel has been the most effective drug I have ever used and I hope it will prove to be the same for you. By the way it always advisable to let your Rheumatology team know that you have stopped using certain drugs.

    Best wishes Jude

  • Thank you. I have spoken to the Rheumy nurse today who has relayed the consultant's rationale to me, and the consultant has said it is actually to do with NICE guidelines, also. If I don't take MTX with the Enbrel and Enbrel doesn't work within three to four months then a second anti TNF injection will not be allowed and I would be moved straight to an infusion medication which she does not want to happen this soon. She said of course it is a free country etc! I then asked if I can come down from high dose MTX to a lesser one and that is an option. I go to see the Rheumy nurse next week to get a reduced MTX script. Then if all goes well in my blood tests etc and after three months all is well, I can reduce it more and then talk about stopping it. She said she didn't want to jeopardise my Enbrel chances at all, especially when first starting it, so we have reached a compromise. Glad Enbrel is working for you.

  • I was on Enbrel alone for five years (I cannot take MTX) I have had a really good result from taking Enbrel until recently when I developed Sjogrens and lung problems. I am not sure if this has anything to do with Enbrel. I am now also on Hydrocloroquine to see if it helps with my dry eyes. So far still not sure.

  • Good luck with Hydrocloro and hope you soon back on track. ;-)

  • The only problem about stopping the methotrexate, as I can see, is that if you should need to stop the Enbrel due to a bacterial infection or any surgical procedure [I have to have a tooth extracted next week] you aren't covered. I am keeping up the Leflunomide, I am on, for this reason x

  • I was always told that MTX had to stop for tooth extractions? Perhaps thinking has changed over the years.

    Good luck with your tooth extraction. I was told I needed one but went for dental hospital advice as it was a low tooth wearing very low, down gum level, and not a bad one as such. I ended up back at the dentist as the dental hospital would not do a GA for my tooth, and having a root canal taking 75 minutes and costing £345!!!! Dentists and vets are professions to be in, as I have recently been reminded! (£500+ for a crown next!!!)

    Anyhow hope all goes well. xx

  • i am on Leflunomide as Mtx gave me horrid tummy cramps. So I am able to continue it when I have to stop the enbrel. I have an infection in the root of the tooth which may come back again as my immune system is suppressed by the medication. I am on antibiotics. Feel a bit rough at the moment. Also have sciatica and a sore toe [probably a corn which is being seen to next week] It does feel like one thing after another. but keep smiling, the sun is shining. Just looking foreward to it warming up a bit more as I do feel the cold.

  • Whenever I have had surgery or anti biotics I come off the Enbrel and go onto a reducing dose of prednisolone over six weeks. It stops any flares and I have tried it several times

  • Hello,

    I haven't had Enbrel but have had three other biologics without taking mtx alongside. My rheumatologist explained to me that, in his view, the reason for taking mtx alongside the biologics is because it can help to prevent you developing antibodies to the drugs which means they become less effective over time and/or you can become allergic to them. What he did say though was that he felt that even a low mtx dose(I think he said as low as 5 or 7.5 mg per week) might be enough to stop this happening. Despite my best efforts, I just can't tolerate mtx and the biologics have all worked well for me without it. But I have become allergic to two out of three of them over time (Infliximab after 5 years, Humira after 2) and the consultant thought that this may not have happened if I had been able to take mtx alongside.

    I really do think it would be worth discussing this further with the rheum team though - maybe you could continue to take the mtx but at a lower dose?

    Hope you get some answers soon and that the Enbrel works as well for you as the other biologics have done for me over the years.


  • Hi Tilly, thanks. ;-) You hit the nail on the head - see my reply above to Jude! Consultant and I are compromising and coming down the MTX and I am seeing the nurse next week to discuss and do the new reduced script to send to the healthcare company.

    Thanks for your good wishes and I hope you are settled on a biologic that is suiting you.

    Neonkitty x

  • Magglen, it is often lttle bits and peces whuch add uo snd Sri e us gaga. I have had a sore toe due to my foot being inflamed but my toe was jabbing against the end of my trainers and has

    added madness to my limp! Hope you feeling better soon. Warmer weather!

  • Thanks,I am beginning to surface. I keep smiling. I am just so grateful to have this wretched disease as an old woman [78yrs] and only started at 70yrs. It must be awful for people much younger. I can't wear pretty shoe because it is hard to find decent ones and live in trainers,,,,,, or long sleeves or bracelets which draw attention to my distorted hands. Doesn't matter at my age but for younger people it is so important to look nice. Love to them all xx

  • Hi Fossil, I am not allowed steroids again I have been told in any form! Had my allowance.

  • Hi

    I take enbrel without MXT just with sulphathazine it works ok for me.

  • Hi Chrissy, glad that's working good for you ;-). Sulphasalazine was my fist DMARD 17 years ago and worked very well for ages for me. I just couldn't swallow them in the end. I shall be reducing to 15mgs MTX shortly and see how that goes by end of July and Enbrel check up, etc. Then come down the MTX more as I understand it.

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