Sorry if i sound thick!

I know what dmards are as ive been on mtx and now leflunomide and they are disease modifying drugs (hope thats right!)

Mtx and me didnt get on at all and now ive upped leflunomide we arnt getting along either lol!

I do read about other categories of drugs so was just wondering how they differ from dmards and what they are called?

Am guessing as my body didnt do well on mtx and is struggling on leflunomide i could well be put on something different but not sure what!

By the way my body has also told me it doesnt do oral steroids! Injection of general steroid i was really good with.

My rheumy nurses are going to think im a pain in the arse when i tell them leflunomide isnt working!

Will i ever get sorted?

8 Replies

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  • Hi there, it's not a thick question as these things are quite complicated. I knew nothing about them either to start with, but once you've had RA for a while it all gets more familiar.

    Look on the NRASwebsite, as they have some v useful guides to the different drugs (www.nras.org.uk). But basically there are quite a variety of drugs for RA that do different things to help control it,and are usually grouped into different categories to explain a bit about what they do. So to start with there are all the painkillers that just block pain and the anti-inflammatories (NSAIDS) that do have a temporary effect on reducing inflammation but neither of these do anything to treat the cause of the problems. So the disease modifying drugs are called that to show that they are actually tackling the RA problem and not just calming the symptoms. There are about a dozen DMARDS, but they all do different things to treat the RA so just because one hasn't worked for you doesn't mean that others won't either. There are all very different chemicals that work on different bits of the processes in your body. No one really understands yet how some of them actually work on RA, and there isn't any way to work out in advance which will work best for whom, so it does have to be trial and error to find one that will suit you. The rheumy docs and nurses are used to that, so don't worry about bugging them.

    If none of the DMARDs work then there's a newer category of drugs called biologics that are completely different types of treatment, as they are manufactured proteins not chemicals, and these also work in different ways to block very specific chemical process in your body such as anti-tnf and interleukin. So these are much more precise, but not necessarily better or worse as it's all a very individual reaction.

    I can take a long time to get sorted, but don't despair as you'll get there in the end. It took me about a year to get my RA under control with the right mix and dose of drugs for me, and I was getting v frustrated but hang on in there. Polly

  • I've been trying to find the right drug for two years, methotrexate gave me severe depressive anxiety attacks, hydroxychloroquine gave me severe breathing difficulties and made me think the house opposite was looking at me, leflunomide plain didn't work and sent my blood pressure to brain bursting heights so now I'm on the track to biologics, which are a treatment not a drug. You have to try the cheaper drugs first as the biologics cost thousands a month.

  • josie , nobody on here would ever see anyone as thick for asking a question , whatever it is ...

    polly`s answered your question very well ,, so ive no more to add .. only that i always find, if ive a question for my rheumy nurse ,, i always ask the question on here first .. it just gives you abit more understanding ,, before you ask the nurse .. also never see yourself as a pain in the bum with your rheumy nurse ,, thier totally understand the difficulties in finding the right treatment and will never see anyone as a pain in the bum .. a GP maybe !! but never a rheumy nurse .. NO WAY ..

    andy x

  • I don't have a rheumy nurse so I just ask on here usually and get then benefit of others rheumy team advice too. But heck that's what this place is for really and if I ask on here then I also know others will benefit from whatever I learn too.

    At least I'm not the only person who suffered from depressive episodes from oral MTX then - but Dogrose I must tell you that taking MTX by injection is a different ballgame to the pills entirely for me. I no longer get mood swings for several days after and no longer feel sick and wretched or have a foul taste and no sense of smell - and it seems to be keeping my ESR down too and pain well away - touch wood!

    The only other thing I query re Polly's excellent answer is whether a person's rheumy team would ever accept not liking a drug or it's side effects as being a case of it not working? To be accepted for the very expensive anti-tnf/ biologics you have to prove that the DMARDs aren't working for you and I believe that is done by your Disease Activity Score -(i.e ESR and number of swollen and painful joints) not by whether you had side effects or not? I know this could be very unfair and also that some people side effects are actually unsafe as well as unpleasant and people are forced to come off them.

    But given the straightened times in which we live and given that none of the drugs we take are particularly pleasant I imagine that the people who assess for whether a patient can go on the biologic/ anti-tnf treatments would want proof that either a drug isn't working effectively enough or that dmards have all been tried and tested for a long enough time to see if side effects pass? Or with MTX - whether patients have been tried with it by injection or not before they qualify for the far more expensive drugs?

  • Hello Josie and all

    First - Josie, as the others have said, please don't ever feel that any question is too silly to ask on here - this RA malarkey is nothing if not complicated!

    Further to Tilda's post, just wanted to say that, in my experience, being unable to tolerate a DMARD can "count" as having tried and failed - providing I think that it has been given a "proper" go. Mtx worked quite well for me but I struggled with it hugely (both tablets and injections) in terms of nausea and being very unwell for about a year and a half before the rheumatologist and I both concluded it wasn't a "goer". Although biologics/ant-tnfs weren't even heard of then, it has been accepted ever since that mtx is not an option for me. (I did try it again more recently for another year with the same result but that was my choice.) I think too that being unable to tolerate a med may actually written into the NICE guidelines on biologics somewhere but, like all these things, much seems to depend on the view of the individual rheumatologist.

    If anyone is interested, it is possible to view the NICE guidelines for biologics by googling "NICE rheumatoid arthritis".

    Tillyx

  • Thank you all for your replies.

    Much appreciated as ever. Im sure as time goes on i'll get more familiar with all the technological language of it all lol!

  • Hi Josie

    As everyone else has said, this is not thick at all, and of course you can't be expected to understand all the terms straight away. I wondered if a brief summary of the main types of drugs used in RA might help?

    DMARDs: Stands for 'disease modifying anti-rheumatic drugs' and includes drugs like MTX and LEF but also sulfasalazine, hydroxychloroquine and others.

    Biologics: These are still DMARDs (we tend to differentiate by calling drugs like MTX 'Standard DMARDs), but you have to meet strict NICE criteria to get onto them. This means firstly having tried MTX and one other standard DMARD and secondly having a high enouugh DAS (disease activity score) on 2 occassions, one month apart.

    NSAIDs: Stands for 'non-steroidal anti-inflammatory drugs' and includes drugs such as ibuprofen, naproxen and diclofenac.

    Steroids (Techinically called corticosteroids, but normally called steroids): Can be given as tablets, general injections or injections into specific joints. Usually not the main form of treatment due to long-term side-effects.

    Painkillers (also known as analgesics): eg. Paracetamol, co-codamol etc.

    Hope that helps you and any others on the site struggling with all these different drug catagories.

    Kind regards

    Victoria

    (NRAS Helpline)

  • What would we do without NRAS and the helpline??

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