Is anyone on anti-tnf without an added dmard?

I've asked this question before without finding anyone however there have been so many new memebers joining I thought I'd give it another try.

I have been on Enbrel since August 2011, has worked brilliant but because of continious drop in white cell count and several infections I keep having to stop the MTX; I am only on 7.5mg.

In the last 4 months I have only had 3 doses of mtx, I'm lucky as my RA hasn't appeared again, I'm aware the mtx may still be in my system; My white cell count has risen and now I should re-start mtx but I think I may delay it a bit more, just to see....

I'm enjoying feeling the rise in wcc, being infection free and the absence of mtx, I feel amost like 'me' again :)

sorry, I ramble but would love to hear anyone elses experiences!

27 Replies

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  • Hi Williby. Obviously I'm not going to be able to put my hand up to this one but just wanted to say hi and add that I too would be very reluctant to take a drug which made me feel so vulnerable. I don't know if my WBC count was affected (it was over the month between blod tests) but when I was on 17.5 mtx I just felt appalling and got 2 nasty viral infections in a row.

    Now back down to 15mg and I'm fine again. I think the RA might be subtly creeping back as I've started aching again, especially at night and in the mornings but won't mention it to anyone (apart from here) because it's still very mild and I have a horror of going back up, even by injectable MTX - and returning to that weak and vulnerable state iwas in earlier this summer. Hoping I'm just imagining the ache anyway?

    I think if it were me I'd hold out against the MTX because you are feeling you again - seems pretty important when you have young kids to not feel sick and fragile to infections etc. there are other drug options that may suit you better now and these should probably be considered if the RA does start to return? Good luck - hope others in your shoes come on here.

    Tilda x

  • Hi Tilda, its amazing the difference 2.5mg of mtx makes for you, for you to feel you can manage 15mg but start to feel the ra, similiar dilemma as myself then!

    Have some great replies below, so have some thinking to do; it makes sense to give it a try without for a while longer but scary at the same time, I'm not due to see me consultant until dec now, if I ask my RA nurse I'm certain she'll tell me to go back on, oh what to do!!!

    what will you do now? go up a dose?

    xx

  • Hi ihad to come of metrexate because of infections and dodge bloods. Anti tnf worked for me for 3years without it sadly has failed now waiting retuxamal next week. Good luck

  • I'm sorry to hear that, I really hope this new one works for you, haven't heard of retuxamal, you'll keep usposted won't you?

    thanks for the reply though, it all helps :)

  • Hello - I am sorry I didn't see your previous post. I am erratic in my use of this site.

    I was on Enbrel along with a high dose of MTX. Like you I had repeated infections which hadn't occurred previously when on MTX only. I asked if I could try Enbrel without MTX to see if it would keep the disease at bay and my Rheumatologist was happy for me to go ahead with this. I believe that was in 2010 and Enbrel has been working well for me ever since.

    I would always check with my Rheumatologist before stopping any drug so that they are aware and can help immediately if the Enbrel alone doesn't hold the disease. I asked about this option at the same point you are at now having been off MTX for a while following infection.

    It has been shown that Enbrel + MTX combined gives the most effective outcome. However, with any drug it's a case of seeing how it goes as we are all so completely different in our make up and what works for one may not for another. As stressed above I would always want the gudiance/awareness of my Rheumatologist as he really does want the best outcome for me. If you haven't got any appointment coming up I'm sure the specialist nurse would check with the consultant for you.

    Good luck in getting the balance right.

  • Hi, don't apologise! it was yonks ago I asked, have been scratching my head over this for a while, it makes sense that I stay of it and after reading your reply I will take your advice and try speak to my consultant about it soon; good idea, i'll ask RA nurse to find out.

    Fantastic news that you've been able to stay of the mtx, good to hear such positive feedback.

    Have you had any or many infections since coming off? and was there no difference in your RA? hope you don't mind the probbing questions!

  • I have been on Leflunomide with Enbrel for several years. I had been wondering if it is the Leflonomide which makes me PU 2 hrly throughout the night and at my appt with the consultant six months ago, he suggested I stop the Leflunomide which I have. Unfortunately it has made no difference to my nighly excursions. I think my RA is not so good without it but it may be the damp weather? I discussed with the consultant what would happen if I got an infection or had to have some surgical procedure which would mean I would have to stop the Enbrel for a while ....as the RA wouldn't be covered. He wasn't bothered. Said it wouldn't matter for a while but they would give me something else [I suppose steroids] until I could go back on the Enbrel. I am seeing him again in a couple of weeks and talk to him more. Will let you know if I learn anything useful.

  • nightmare for you, you must be shattered having to get up so often in the night!

    The damp weather does give me the odd twinge also, hopefully for you thats what it is and not flaring; would be good to hear how you get on, thanks :)

  • I have been on 7.5mg MTX injections too, and have to keep stopping. (Chest problems, chronic tonsilitis, etc.) I have been told that if I don't keep on with the MTX I can't even be considered for Anti-TNF.

    I have been asked to go back on Leflunomide (but it made me ill and is a risk for high blood pressure - I already have high blood pressure.)

    Or I can have Prednisolone which, I was warned, introduces the possibility of Diabetes not to mention Osteoporosis.)

    Or I have to have MTX again.

    (I already take Sulfasalazine and Hydroxychloroquine.)

    So I asked them for a few days to have a think about which next complication I would like to add! Hmmm...

    I gather I don't meet the criteria for the Anti-TNF funding as, although I have lots of RA problems, they aren't the ones on the checklist for the funding. Trust me to get the wrong symptoms! I can't be trying hard enough.

    So it is actually very encouraging to know that you can have the benefit of Enbrel without the addition of MTX. Maybe I should get a second opinion.

  • I'm no expert but can't understand why you won't be considered for anti-tnf if you come of the mtx, surely it's not suitable for you and deemed a failure. You have tried 3 dmard's and thats not working for you, would that be your das score thats holding you back from getting anti-tnf do you think?

    I would get a second opinion if I were you, Enbrel has given me my life back and wish it wasn't so hard for everyone to get access to it :(

  • Hello Wilby

    I am now on my 3rd biologic and have not had mtx alongside any of them because I am unable to tolerate it. I think that, when I had my first anti-tnf (Infliximab) many years ago I was still on Sulphasalazine but I haven't taken that for many years now. My consultant tells me that mtx is helpful, even at low doses, alongside the biologics because it can help to prevent you becoming allergic to them over time. This is borne out in my case because, although Infliximab worked brilliantly for me I had an infusion reaction after 5 years and had to stop. Humira worked well (although not as well as the Infliximab) for a couple of years before I became allergic to that one too and had to stop. I am now on Rituximab and, so far so good. The consultant has told me that, if I had been able to continue with the mtx, I may well not have had these allergic reactions but given that I can't "do" mtx he is quite happy for me to have the biologics without it. So far I have not needed another DMARD alongside - although, on Rituximab, I do still need prednisolone to keep the RA at a manageable level.

    Phoebe - NICE do make provision in their anti-tnf prescribing criteria for people who cannot take mtx (you can find the NICE guidelines by typing "NICE rheumatoid arthritis" into Google) so it isn't an absolute no-no. I think you can also find the eligibility criteria on the NICE website which, if you think you qualify, it might be a starting point for discussions with your consultant.

    Tillyx

  • thanks Tilly, just when I thought I'd made a firm decision, I come to your reply! this is where I find this site so very helpful, the different experiences and knowledge from you all; very interesting and it makes complete sense to me re-allergies. I will still speak to consultant and or nurse but I've have more of an open mind now if they suggest I stick with the MTX, maybe I could reduce my dose even further, that would be a good compromise :)

    many thanks!

  • You're welcome Wilby.

    My rheumatologist indicated to me that (in his words) a dose of mtx "as low as " 7.5 mg may, in his opinion, help to prevent my body making antibodies against the biologics. Unfortunately though I was unable to tolerate mtx even at 5mg - despite two tries, many years apart, for more than a year each time. So I just have to hope that I don't have any probs with the Rituximab. So far so good though.

    Really hope you can find a compromise which works for you.

    Tillyx

  • thanks again, I love it when I understand something!! :) you've explained that very well for my pea sized brain to process!!

    Good to hear Rituximab is working for you, sounds like you have quite a lot of experience with anti-tnfs! xx

  • You're more than welcome Wilby. You really did make me laugh with your "pea sized brain" comment! I'm very much the same lol.

    Thanks for what you said about the Ritux - it is definitely working - just wish it would hurry up and work a bit better - if it's going to! Don't really want to be trying biologic number 4 anytime soon (assuming they would fund me for a fourth).

    Tillyx

  • Thanks Tilly. That's helpful. I do feel a bit like a second class citizen. I have had RA for 20 years, so I am tired of hearing of the benefits of a drug that I don't seem entitled to.

    Having said that, all drugs have a price to pay, complications-wise. I have yet to find out what the down-side of Anti Tnf therapy is!

  • You're welcome Phoebe. I've had RA for 17 years, so nearly as long as you. I'm sad for you that you feel like a second class citizen and I hope that perhaps you can ask some questions about your eligibility because it does seem very unfair that you might be missing out on something which might help you. I also find it very frustrating that the eligibility for these meds seems to vary so much from area to area and seems to be so dependent on "box ticking" in terms of DAS scores and blood tests, with little account seeming to be taken of how well, or otherwise, the individual actually is, and the impact that the RA is having on their day to day life. Sorry, rant over.

    As for complications - you are so right! And with the anti-tnfs, as with the other meds, I've come to the conclusion that, no matter what experiences others have had, the only way to know for sure is to try (if you are given the opportunity). And, having had pretty much every DMARD going over the years, and now working my way through the biologics, I have only had real problems with a few of them, and in all cases the side effects have gone once the drug has worked its way out of my system.

    Tillyx

  • Hi again Williby. A lot of food for thought for you here then. I suppose if RA makes a come back for me now I'm on 15mg MTX and 400mg Hydroxy then I will just have to go with my rheumy's plan B of MTX at a higher dose by injection and suffer the consequences re viruses etc. I have had the impression from my GP and rheumy that if liver and WBCs kick off then the MTX is stopped - assume that if this is a repeat scenario that you just have to stop taking it? Surely that's the whole point of having the monitoring tests?

    If you can't tolerate the drugs then they have failed you re RA surely? You can't keep stopping and starting a drug that lowers your WBCs continually? I know that my rheumy explained that they like to try and keep people on MTX where possible - but he agreed that sometimes this just isn't possible and there are still options. If I do go back up a dose again and get ill continually then I won't just put up with it. There has to be some quality of life - we can't just jeopardise this completely in order to stave off worsening RA - it's such a balancing act isn't it? If real RA pain doesn't come back for me then I'll put up with low level aches and pains and keep shtum unless things worsen! But like you i dont like the thought of goibg against my RA team's wishes so i think you need to be really straight with them all

    about how the MTX makes you feel. Tilda xx

  • morning Tilda, don't know about you but it blooming feezin with us today brrrrr!

    Tilly's reply has given me some thought, but positive thoughts, great to have as much info as possible.

    I'm back at work now also and with dozens of nice but snotty students I'll have no chance if my wcc is low!!lol

    sorry, little one has decided to climb on me so have to dash :)

  • Gorgeously sunny here today Williby. I feel a bit guilty saying this to you but we are having an Indian summer up here and I'm enjoying every moment. Funny how you are the nearest contributor to this site to me and yet our weathers are completely different sometimes?

    Yes a lot on this thread has made me think too. I'm back on track today - maybe as a result of taking a naproxen last night - I take so few of these painkiller/ NSAID pills that it only takes one to sort me out these days and they seem to buy me a good night's sleep too. Been for a lovely walk with son and dog this morning and now going to go and sunbathe in the garden - although there's quite an autumnal nip in the air - but I'm relieved as that chases off the usual end of summer Scottish midges at least! TTx

  • typical for us, we got your sunshine this afternoon :)

    I can't tolerate any NSAID's at all now but take the odd ginger capsule instead, can't remember who told me to try that one :)

    hope you had a lovely sunbathe! xx

  • Wiliby in response to your questions ...

    Since being on Enbrel alone I have had one case of ear infection but as I've had ear infections on and off from a child I don't think that can be blamed on the absence of MTX or the presence of Enbrel.

    I should point out that I never had any problems with MTX alone - there may have been the occasional suggestion of nausea which seemed to pass as soon as it had been noticed - the infections came with the combination of drugs.

    I was interested to see the reference to MTX possibly preventing future allergy to the biologics. Question for NRAS - do you have any references to this? If that were the case I would certainly consider trying low level MTX.

    How is the RA? Last summer I was waiting a knee replacement but I was able to walk from the Embankment to the Millennium bridge - I had really just wanted to walk over the bridge to the Globe but got out at the wrong station - and there were no consequences the next day. As people seem to like the CRP measurement it is currently at 2 and I feel good. I will be taking Naproxen today and may be for a few days as I have pushed very hard this week and there is a little stiffness in my joints, but for the most part I take neither naprosyn nor paracetamol.

    However I am in my sixities and have had this disease for some time. I am not expecting to be able to walk miles on a weekly or daily baisis, I don't have young children and I don't mow the lawn and so on. These may be factors in how well the drug works for me. It is such an individual response that the only way to know is to try but I would certainly check on the allergy reference with your consultant.

    Good Luck. Jude

  • Yes, would love to kow more about the prevention of allergies to anti-tnf; so glad it works for me I wouldn't want to risk it.

    Thank you so much for responding and for your personal input and your experiences; I feel so lucky in the fact that my RA made an appearance after anti-tnf's were developed (if you know what I mean) and it was brought under control before any real damage.

    Thanks Jude :)

  • Hi Wiliby,

    Just reading your question, I hav'nt had much time on site in ages with one thing and another. I had to skip a couple of mtx doses and since back on 17.5 mgs with my Humira am suffering v bad fatigue, I am going to ask my Rheum at next visit can I reduce or try to get off mtx. I hav'nt had the infections you speak of, except some sinus problems, due into hospital for the day on Thurs so they can have a good snoop around my sinuses under anaesthetic - lovely,

    Anyway, hope everyone still 'onwards and upwards'. ps. my left hip & left ankle are now giving trouble ie aches, just thought I'd share. lol.

    Regards, and best wishes to all my old HU & NRAS pals, and all the newbies,

    GINA.

    xxx

  • Hello!!! yes you have been very quiet, good to hear from you :)

    I remember you having mentioned sinus problems before, hope that gets sorted for you, as a child I had a sinus removed, or I was told that anyhow!! but it made a huge difference for me.

    I do hope you manage to reduce your mtx; but I do remember your RA was very aggressive.

    You should blog Gina, otherwise I'll have to announce on a blog title, ''GINA'S BACK.....GO SEE....SHE'S IN MY QUESTION'' haha

    hope you feel better soon :)

    XX

  • Hello Wiliby looks like you've had lots of replies, but thought I would answer you. I'm new to this or any site but having had RA for 25 years starting with it when my daughter was six wks old I have a lot of experience of trying pretty much everything. I've just come off Humera (Enbrel) after it stopped working for me, and have had the first infusion of Rifliximab. I was on mtx for 12 years it was fantastic but it started to wipe my white blood cells out so I had to come off it. I was on Humera on its own which seemed to work ok for a couple of years then stopped working. Before I came off it I was having a lot of flare ups so I asked my rheumatologist if I could go back on mtx. I think he was a bit shocked but I was feeling desperate and I know it works. I'm on 7.5 and have my 2nd infusion on tues. as I understand it, with the anti TNF's you need both drugs as they do separate jobs, but as long as your blood is being checked every 6 wks to keep an eye on your immune system basically, you will be ok. For me mtx is a pain in the proverbial but it does work. Just keep an eye on your bloods! Hope this has helped. Keep the faith! It's a bloody awful thing to have is RA I wouldn't wish it on anyone but it will never have me I have it! Xxx

  • Hi LLouise,

    Thanks for your reply, the more the better!

    Mine started when daughter was 6 weeks as well, (she's 20 months old now)

    Hope you got on okay having your infusion yesterday, have you felt a difference with it yet?

    I'm waiting to hear latest white cell count before I hear if it's okay to go back on mtx, like you had, i've been having the same problems with it being low; I can handle that, rather the odd infection than the RA but we'll see; all the replies including yours has helped me understand the importance of mtx and I just hope now that I will be able to continue!

    Can I ask you another question? I think as your experience of being hit with RA after child birth like myself, feel free to decline as I'm sooo nosey! anyway, questions, I still feel unable to get past how frightened I was being newly diagnosed with a baby, almost like a trauma, does that make sense? did you feel like that? I wasn't depressed but just terrified, kept it all in at the time....

    and, (sorry) do you know if or how was your daughter affected growing up with her Mum being ill? this is very personal!!

    Thanks again xx

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