Hi everyone!
I was given my RA diagnosis on Friday morning, and advised by the rheumatologist to look at the versus arthritis Website to decide whether I want methotrexate, sulphasalazine or leflunamide.
I’ve googled beyond that, and spoken to a friend who has RA, and I just can’t decide!!! They all seem to have issues and the more I read the more scared I become!
I don’t know what to do! Any advice?
TIA!
Hi Tatgibbon,
Sorry that you’ve ‘qualified’ to join our merry band but welcome aboard! 😎
The meds are a bit of a mine field and I fortunately wasn’t given the choice of what to start on so didn’t have that added stress... it’s ok to go back and say ‘I’ve no experience of this. I don’t know which med would be best. Which one do you recommend?’.
I was started on methotrexate (often referred to as MTX) and this was my only med for 7 years and now I’ve had to add sulfasalazine as I flared during a bout of COVID and haven’t managed to get things to settle back down again.
Which ever med you start with try and do a slow build up to the desired dose as this will help reduce any side effects (what dosage will depend on how ‘busy’ your R.A. is right now!) Drink loads of water and get plenty of rest if possible.
Also know that no everyone gets the side effects listed and hopefully you will be lucky and tolerate the med well.
All the best
Ali
I really agree with building up...then if you get a side affect you can drop back down for a bit or change meds. Years ago it was standard to start people on a high dose but seems to have been changed since then. I have had gold and penicillamine in the distant past to good effect before having side affects and having to stop, and recently about nine months ago had to stop Sulfasalazine because of a bad rash, although I was responding very well to that. I'm back on Methotrexate again now, which I have had for years, and, so far so good...no side affects. Try not to be too alarmed by the 'gumph' you read, because the majority of patients don't suffer side affects at all, at least the serious ones, and they keep a very close eye on us with weekly blood tests initially to pick up if there are any adverse reactions.
Welcome to the club that nobody wants to be in 🙄 I'll second everything Ali has just told you it's great advice. Which ever dmard you choose may not be" the one" but remember there are others to try so don't despair. Do not be scared of speaking to your rheumy team or your GP if you have a problem let them know.
There are lots of lovely people on here and someone will always try to give you an answer to any questions you may have, again don't be scared to ask no matter how trivial you think the question is. They are a good bunch....a little crazy maybe.....
🙃😜 but always there to help
So sorry you had to join us, but welcome, you will find much support here on the forum.It might be worth asking your rheumatologist which DMARD they would recommend ?
I haven't heard of anyone just starting out being given a choice, these medications are usually recommended to you.
Best wishes to you.
I was offered a choice of mtx or sulfasalazine, I think partly because I went in sounding like I had half a clue what I was talking about. I didn’t, really. In the end, after reading up online, I plumped for the mtx on the basis that it’s a common first line for all types of inflammatory arthritis (I have likely psoriatic arthritis rather than RA), and I was a mess having been undiagnosed and untreated for the better part of two decades, so decided I wanted to be a bit more ‘aggressive’. Within about 4 months without much joy I was on mtx and leflunomide together and continued on them both for a further 9 months. When I got to the max doses of both of those, they were going to add in sulfa so that I was taking all three at the same time, before my body got other ideas and threw some wobbly blood results at me 🤷♂️
I think the point I’m trying to make is whatever you decide to do now, you’re not setting a path in stone that can’t be altered or added to depending on the response you get. Whilst some people get great, long term results with the first med they try, there are quite a few who have to try a few different ones or different meds in combination before finding what really works for them. For me, the main thing would be just to start on something so that the voyage of arthritis control discovery is underway. Different consultants recommend different things around alcohol, but that’s possibly something to consider when deciding: my local team will not prescribe mtx to any patient who isn’t willing to completely abstain, which might make sulfa a more inviting choice for some that like a glass or two at the weekend, at least in my neck of the woods. You’ll find here that the advice given does tend to vary quite a bit, and not just on an individual patient to patient basis.
The other thing to bear in mind is that side effects listed in patient literature are not necessarily a direct result of the med taken. Some will be, but when medication is tested, for safety’s sake all reported side effects are included, not just the ones that they can prove were definitely caused by the med in question. That’s why paracetamol is listed as potentially causing headaches. Why saline used to make up injections and IV medications, literal salt water, has a list of 14 potential side effects. Our blood is made of stronger salt solution than medical saline. Many people take each of these meds without any really nasty side effects. Some people taking mtx don’t get any side effects at all, and if you persevere, many side effects of any drug will ease with time; put anything unfamiliar into the human body and it does take it time to adjust, but quite often will to a greater or lesser extent. I personally had very few problems with mtx tablets, but gradually had issues over time when I switched to the injections. Leflunomide was also fine other than some skin issues (I’m prone to adult acne and cysts) and headaches in the early days, but nothing that made me even think about stopping taking it, and subsequent dose increases were fine.
As Ali_H says, there’s nothing to stop you saying you don’t know what to do and asking for your consultant’s suggestion. Expecting us to make a choice without experience, particularly when newly diagnosed, would be quite a big ask for a lot of people, I think.
Welcome to the site. When I was diagnossd many years ago, I wasn't given a choice. I am glad I wasn't and think it is rather unfair to ask you to decide when you don't know anything about any of fhe drugs. Your Rheumatologist is the expert, he/she should decide in my opinion. I would pass it back to them to decide if I were you. Good luck.
Try them as what works for someone else might not work for you. We all have different reactions to these drugs. Hugs.xxxxxx
Hi Tatgibbon. I was given the same choice a few months ago when I was diagnosed. I didn't really know what I wanted to try. I went back saying that I'd prefer to try sulfasalazine but asked what my doctor recommended given my particular circumstances. She thought hydroxychloroquine would suit me better so that is what I'm trying first. You can always ask them to recommend one if you haven't got strong feelings about what you try first. Getting a new diagnosis of RA is tough. It's really good to know that you're not on your own in this 
Thank you all for taking the time to reply! I’m due a call from the rheumatologist today and I think I’ll tell him I’m bewildered and what would he recommend. Wherever I read there’s good and terrible stories about all of them! And the more I read the more worried I become about what is currently inconvenient (but so painful!) random joint malfunctions!
But again, thank you for the welcome and advice xx
There are many good stories about them too! Nothing you try is forever and if they don’t suit you can change. We are given a choice because no one knows for certain what will work for any individual. Including your rheumatologist. You will be closely monitored whatever you start on. Breathe. Most of us here are living examples of drug success. We tend not to post when things are going well!
Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Kind regards.
Hiya Tatgibbon, welcome. I do agree it's not really on that your Rheumy has asked you to make a choice by reading about the 3 DMARDs offered. It would have been more helpful for him to share his knowledge of each, it wouldn't have taken long & you'd have been far more correctly informed, by that I mean focusing on the positives & not the negatives which always come to the fore on the internet, they're not a given. That's not to say you may not experience some negatives, realistically in common with all meds there are side effects of each, it's more usual though to have some that are tolerable than serious. On the whole though of course the idea is they do more good than harm. Maybe you'll find further help from the the NRAS dedicated DMARD info, further to Versus Arthritis pages & the replies you've received here nras.org.uk/resource/dmards/
From a personal perspective since 2008, when I was diagnosed, I’ve tried all three, but started on one you've not been offered, hydroxychloroquine (HCQ). The next was MTX which I'm still taking, 12 years now, but I have also tried (as double therapy with MTX) SSZ & then the next was LEF. I remain on monotherapy MTX plus other meds such as maintenance dose prednisolone, a corticosteroid (or steroid as they're usually called).
If it was me at your next appointment I would say something along the lines of you've read up on each & even joined here & asked for experiences but you would like his input as to which he considers is best for your particular situation. After all he's examined you & determined which joint involvement you have so formed a prognosis based on your imaging & whether you have any erosions or other issues & finally the bloods you've had taken. He's the specialist & these are specialist meds, only he can initiate the prescribing of them so how he thinks you can make a truly informed decision by reading about each DMARD I think is a tad unfair. Whilst it's always preferable to be included in decision making you're barely informed of your diagnosis & that in itself & all it entails is quite enough for you to be dealing with just now.
Keep talking, it will help. Don't be backwards in coming forwards, we'd rather you asked what you may think is a silly or insignificant question…neither exist in someone with Rheumatoid Disease!
I'm very new to this too but wanted to share my experience. The consultant started me on 20mg methotrexate once a week straight away as my joint pain and swelling wasn't fully controlled by a course of steroids and he said that meant that the disease was very active. I've taken 4 doses of methotrexate so far and it's been really fine. The first week I felt hungover and a bit nauseous the day after. The three following doses I felt a little bit blargh the day after but nothing major. After reading horror stories, and my consultant telling me to eat a big meal before taking it because I might vomit for a few days, I'm really relieved with how easy it's been. Now to see whether it actually works!
It has to be your decision at the end of the day, we all react differently to these medications. I would also ask for advice from your rheumatologist, which ones will work best in his opinion with years of experience with the patients behind him, he will have a good feel for for the results will be in particular people. Now having said that, I tried all of the above. The best for me was the methotrexate which put me into remission for all but 10 years. The others made no difference at all. After the MTX stopped working so well, they tried adding in a series of other DMARDS to it, but none had any effect. In the end they've put me on a biologic, etanercept, that I inject weekly. Still taking the MTX as it appears the biologics also work better if they are combined with that. This combo is working for me at the moment, although not quite as good as the MTX alone did in the first few years. Now, it's true that many people do get some side effects from MTX and they will keep an eye on you for that. But for me (and also many others), I've had no adverse effects and I'm a big fan of that medicine, it's made a huge difference to my life.
Decision made! I pushed back to him and after some to-ing and fro-ing and discussions on the potential side effects we went with Methotrexate.
Thank you all - and lovely to hear of the long term great results with it SueBaker - here’s hoping I’m the same
Very surprised that the Rheumatologist asked you to choose!
Be aware that the people who post on the internet about terrible side effects are likely to be those who do have these problems and want to let off steam about them! Lots of people have good results and no serious problems.
If you have to make a choice then methotrexate may be the best bet. It is essentially the standard treatment and has a good track record of working.
Whatever you are started on, you should be getting started on a small dose with initial weekly/fortnightly comprehensive blood tests to make sure you aren't having a bad reaction. I was started on Sulphasalazine. It fixed the arthritis but after a few months my liver function tests went off the scale. I then went on Methotrexate which has worked for over ten years. Other people might have the opposite reaction.
An important think to realise about possible side effects is that active RA itself can give you lots of the same problems. If you don't take a DMARD when the symptoms first appear then you are likely to get progressive damage to joints and other systems which can't then be fixed. If you take a DMARD (and you are lucky with your genetics) then you may find yourself back to normal. Pain killers and NSAIDs may help with the pain but they won't stop damage. Also NSAID s are notorious for causing stomach problems.
So! If you are having significant RA symptoms then do take a DMARD if offered. The effects must be closely monitored by the doctor and another medication swapped if you have bad side effects or your blood tests go too far out of normal limits.
Best of luck!
Hello, just Quick because it’s so worrying for you, when I was diagnosed, I was put on all 3 you were offered at once! (Triple therapy) and terrifying as the side effects look, I had absolutely no side effects (apart from a little yellow pee 🙈) and I’m the one who would take a reaction to a paracetamol before x
Hi Tat,To cut a long story short,
Explosive polyarthritis ( after years of ignoring what I thought was mild finger pain)
High dose steroids, ( steroid induced diabetes)
Controlled but speedy taper.
MTX ( Liver objected)
Sulfasalazine ( serious allergic reaction)
Leflunomide ( Liver really objected)
Hydroxychloroquine ( allergic reaction but now take daily antihistamine to combat the itch, benefit of drug worth it apparently, always make sure you get your specific eye tests)
Enbrel/Benepali anti TNF Biologic/Biosimilar injection, has worked mostly though 6 years post diagnosis they are thinking of Rituximab if I have advanced from Sero negative to sero positive , sadly not Toxilumab due to chance of liver not doing well historically.
Maybe now onto JAK inhibitors If I keep flaring.
Good luck to you with your journey , MTX can be the super star gold standard of treatment and works amazingly for some, even if they have to switch to injections rather than tablets. Don’t forget your folic acid.
Mx
When??
Which joints hurt?
BMJ DMARD infographic 
Codeine or ibuprofen 
Heatwave Benefits?
