Hello, I've been lurking here a while, so I suppose I should introduce myself first. I'm a 24 yr old university student who was diagnosed with seronegative RA nearly 3 yrs ago. I've been on MTX for 2 years. There have been some improvements with my hands and wrist joints since changing to the injected version nearly a year ago but I've still got inflammation. My bloods are all over the place and I have a lot of active RA in my feet (including toes) and ankles. So, now it's time to try a combination therapy again. Hydroxychloroquine didn't touch the disease at all (it just made me faint!) and sulfasalazine gave me a bad reaction.
The lovely people at NRAS suggested leflunomide and MTX as a combination and I wondered how people have found this? I know everyone is different but I'd like to do my research. My rheumy was a bit concerned about my leflunomide in case I fall pregnant but it's really going to happen. I've got another couple of years of uni and children are at least 5 years down the line for me. Regardless, I'm quite scared about making this decision especially as I had a bad time with hydroxy and sulfa. My clinic are keen for me to make my own choices and don't seem to be pushing me in any particular direction.
Thanks for reading, this was longer than I had planned it to be!
First off welcome,you have found us and we are a great bunch of people. You have a good rheumy who is letting you make your own choices, that makes things a lot easier for you. You will have to get your bloods sorted and your ra settled. What are you studying at uni? You will tell them if you plan to get pregnant anyway so thats not an issue for you to worry about now. Mind you i believe your syptoms get easier while your pregnant,ask nras and they will tell you about that.
Look at things that can aid you at uni, eg: thick pens,cutlery with thick handles they all help. I have both. There are also gloves without fingers as well,these i find really useful.
Thank you for the welcome. I'm a social work student, about to go into my second year. I have a lot of help an uni and I love those gloves without fingers. They're wonderful!
interesting, since I'm on the verge of the same decision. I've been on triple therapy (MTX, hydroxy and sulpha) for a few years without too many problems. But is no longer holding the RA in check, and I've started getting side effects. My rheumy team are hoping that I will be able to move to biologics (which I find very scary) but if can't get the go ahead for that then plan B is a lower dose of MTX and add in Leflunomide.
What worries me is the double dose of drugs that have an immunosuppressant effect, as well as the question as to whether I'll tolerate it or not. But it does seem totally random whether you'll get on with any particular drug or not, so I'm not really factoring that into the decision. I think you just have to hope for the best, and be prepared to adjust if it does give problems.
But I'm past kids ( at least I hope so!). I think that's something you need to think about a bit more. You say it's 5 years off for you - but accidents can happen so would you really be prepared to risk it? and if you do want kids then perhaps sooner rather than later is better if you've got RA? and if you have to wait 2 years are stopping Lef then that's a fairly long time.
I know there are some on here taking the MTX/Lef combination so maybe they'll chip in too...... Polly
Don't worry too much about biologics. I'd be happy to discuss with you - I've been on them for almost ten years. It's made a huge difference, and feels quite gentle - unlike mtx. And you do get monitored very comprehensively.
Hello, thanks for the reply Polly. I am also worried about the immunosuppressant effects, given that I seem to picking up a lot of infections and viruses on MTX.
I'm on the pill and very careful with it too. I didn't mention it in post but I have a genetic disease as well as being a carrier of another nasty genetic disease, so there's no way I could safely get pregnant unexpectedly.
My wife has had psoriatic arthritis for c.9 yrs. A very painful and debilitating condition. In 2008 her consultant (he's actually good guy) switched her medication from Methotrexate to Leflunomide. The ensuing events were catastrophic and almost fatal, and in a minute time scale. Her GP had patronisingly suggested she was overtired when she mentioned extreme tiredness, almost passing out. She was a head teacher, and ALWAYS in control, and his prognosis was so wrong. Luckily in the same week, she a had a clinic appt with her consultant. After initially asking how she was coping, without looking up from whatever he was writing, she replied 'none too well'. As a patient who never complains, he immediately changed tack, and suffice to say she was in intensive care within the hour, being pumped up with 3000mg steroids. Yes three thousand. Fast forward, ignoring the verbal inquests and apologies, the reality is that she suffered Instertial Numenitis, with irreversible lung damage. A joint report, authored by her consultant and another from another major regional hospital was flashed to the World Heath Organization with a warning that 'the use of Methotrexate and Leflunomide in close (timE0 proximity can cause fatality any time during therapy'. Last week, her GP and a trainee GP suggested she switched from Flamrase to Naproxen as the former causes heart disease . Low and behold, the Neproxen fact sheet warns it should never be used with Methotrexate as there potential fatal consequences. Flamrase is not available from the manufacturer until June 2014.
Does anyone have any personal experience of MTX with Neproxen?
I'm sorry for your wife's experience but methotrexate and leflunomide are very commonly prescribed together. As with all DMARDs, they need close monitoring, and rarely, there can be terrible side effects. Again, i am so sorry this happened to you both. But its very rare, and very unlikely. Also, methotrexate and naproxen are often prescribed together. The warnings generally related to the much higher doses of methotrexate when used as chemotherapy, not the low dose used in RA. It is common to take all of these drugs together. I am in no way diminishing your experience, or negating how horrific is must have been. And I wish you both the best. But mtx and leflunomide and mtx and naproxen are very commonly and safely prescribed together. All three are often prescribed together, but most be monitored carefully. Almost all side effects are reversible on stopping one or all of the medications. The most common issue is usually that mtx is hard on the liver and so is leflunomide, so there is a higher risk of liver damage when taken together, and liver function has to be tested regularly.
Hi - firstly welcome! Secondly I did some research when offered a choice between Hydroxy and Sulpha to be added to the MTX I was taking. I think Lef is the more powerful and equivalent to MTX in potential toxicity and effectiveness and as Polly says it's also an immunosuppressant so it may be worth thinking about taking less MTX in order not to suppress your immune system too much. Both can put a strain on your liver function too - which is why I decided to try the Hydroxy instead as my liver is always a bit jumpy it seems.
I'm interested that you say Hydroxy made you feel faint because I'm becoming more convinced that it is affecting me too - I feel slightly sick and dizzy and very tired after taking each dose at lunchtime daily. I couldn't take the Sulpha at all so I relate to your intolerance there too.
I agree with Polly that thinking ahead re conceiving is a factor if it's 2 years before it leaves you system but also agree with Sylvi that the most important thing is knocking the RA on the head if possible. If you are still studying then pregnancy will be the last thing on your mind - I remember having some problems with what they thought was POS or an NSU when I was your age and they kept telling me I should have this investigative opp done to help me so I would be able to conceive and I got so fed up with the male gynae saying this because I had no plan to have kids and just wanted to get on with my postgrad studies at the time. Then a few years later I was desperate to conceive and it took ages (2 years) and I did then come to regret rejecting their advice - so it's a tough one. But I think if it were me I'd concentrate on the RA for the time being. Tilda xx
• in reply to
Hello Tilda,
I mentioned it above but really there is no way I could safely become pregnant and I have no plans. I'm also single, so right now, it's impossible! So, I'm going to have to do some serious explaining to my rheumy that it's not an issue, although I can understand why she's concerned.
I felt similar on hydroxy. I dropped down the dose, then I stopped for a few weeks (under the watchful eye of my rheumy) and when I started again, the symptoms began. I perservered but it didn't ease up and it didn't make any difference to my RA so it wasn't even like there were any positives! I'm sorry you're having similar symptoms. I've spoken to a few people who have said similar and I'm wondering how common it really is.
Thanks for your advice, really appreciate it. I've got lots to think about.
Hi, I Agree with all of the above advice + I have been on Meth/Lef for about three years now. Previously to that it was meth/sulpha mix and that just wasn't working at all.
Have to say my life improved greatly when I started taking the Leflumide but be aware (like a lot of things) it doesn't work for everyone.
I take leflunomide and have done well on it. Before I started taking it I did a bit of research. Although I had finished my family I was worried about what would happen if I fell pregnant by accident as I know I wouldn't be able to go through with an abortion (emotionally -not for any other reason!).
Anyway from reading several scientific reports on the subject although it clearly not advisable to conceive on it but there have been several babies born that were conceived while the mother was taking leuflunomide and they have been no adverse side effects. They advised if you did get pregnant to have a treatment to wash the leflunomide out of your system as soon as you find out. From this I took reassurance - I am taking careful precautions not to get pregnant but if the worse did happen hopefully it will not be a problem.
Would your consultant be happy if you had one of the new coils fitted? Or could you take the pill.
Interestingly if in the future you decide you do want to start a family you can have the wash out treatment which cuts the time you have to wait from 2 years to about 3 months (you have to have a blood test to confirm your system is clear of it.)
Just to reitterate I'm not suggesting it is ok to get pregnant while taking it. It is a very potent drug which affects cell division You should be very careful.
Yes I had heard about a wash out treatment. My rheumy mentioned it but we haven't had a proper discussion about lef/mtx yet. I'm seeing her again in about 6 weeks.
I'm on the pill and very careful, as well as currently being single. As I mentioned above, I have a genetic disease as well as being a carrier of another one, so unplanned pregnancy cannot happen.
Just a hello. Ive got no suggestion on the drugs. , thought I would welcome you to the group, It has been great for me, as it gives a true insight into how others cope and that is and enormous help... glad you joined and good luck.
Leflunamide and mtx. combo worked well for me and I had good results for a number of years. Now further down the line I'm also on rituximab infusion as well. Advice given with regard to getting pregnant has been well avised by others here, I also believe mtx. is another dodgy one if intending to start a familly but as you say you have no intentions of starting a family. Hope leflunamide and mtx. combo works well for you as it has for me.
My wife has had psoriatic arthritis for c.9 yrs. A very painful and debilitating condition. In 2008 her consultant (he's actually good guy) switched her medication from Methotrexate to Leflunomide. The ensuing events were catastrophic and almost fatal, and in a minute time scale. Her GP had patronisingly suggested she was overtired when she mentioned extreme tiredness, almost passing out. She was a head teacher, and ALWAYS in control, and his prognosis was so wrong. Luckily in the same week, she a had a clinic appt with her consultant. After initially asking how she was coping, without looking up from whatever he was writing, she replied 'none too well'. As a patient who never complains, he immediately changed tack, and suffice to say she was in intensive care within the hour, being pumped up with 3000mg steroids. Yes three thousand. Fast forward, ignoring the verbal inquests and apologies, the reality is that she suffered Instertial Numenitis, with irreversible lung damage. A joint report, authored by her consultant and another from another major regional hospital was flashed to the World Heath Organization with a warning that 'the use of Methotrexate and Leflunomide in close (timE0 proximity can cause fatality any time during therapy'. Last week, her GP and a trainee GP suggested she switched from Flamrase to Naproxen as the former causes heart disease . Low and behold, the Neproxen fact sheet warns it should never be used with Methotrexate as there potential fatal consequences. Flamrase is not available from the manufacturer until June 2014.
Does anyone have any personal experience of MTX with Neproxen?
Yes, see my reply above. Methotrexate and naproxen are often prescribed together and it is safe. The warnings generally relate to teh much higher doses of methotrexate taken as chemotherapy for cancer, not the low doses prescribed for arthritis. The two medications are very commonly prescribed together for RA or PsA or other forms of inflammatory arthritis. Discuss it with your doctor if you're worried, but also trust the doctors who prescribed it. I'm sorry your wife has suffered so much, I'm not minimising that for a moment. She is a very rare case, and it must have been horrific for both of you. And very hard to trust now. But mtx and naproxen are safe when taken as prescribed and you have your regular lab tests to monitor. Same applies with leflunomide. All three are commonly prescribed together.
I have been on this combination approx. 4 years, and mostly been in remission, I do have a raised blood pressure & have been put on pills to reduce it, I have developed a higher cholestral 6.8 and am now on statins for that also developed irregular heart beat, is this a side effect? does anyone else have this problem?
Not exactly, my blood pressure is fine but I'm already on BP pills. I do however have a raised heart rate, which my rheumatologist told me on thursday, could be due to lefluomide. I'm not sure how long this has been going on but could have started 3 months ago when my lefluomide was increased from 10 to 20mg. However, I suspect that it may have been going on for longer as when I've had my BP taken in the past, I've only asked about my BP and never about my pulse rate
until the last few tests. My lefluomide has now been decreased to
10mg (not because of my raised heart rate I should add) and I've been prescribed 10mg of methotrexate instead, so will be interesting to see what happens pulse wise. Must say that I'm a bit concerned even though my pulse is not seriously high. The thing is I had a mild heart attack about 8 years ago and am already on asprin and statins. On the plus side, I had an ECG 2 months ago, which was ok, so some sort of reassurance I suppose.
Hello welcome on board, you will meet loads of new people here. I am interested to as I started leflunomide last Thursday and changing to methotrexate injections when they arrive, I have been on methotrexate 20mg for 20 years they were my life changer, but right now I am back at square one.
I think it's the new way to give us the choice on what drugs we want, which I am not sure I like, I have tried loads of biologics and anti tnfs but to no avail.
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I'm a 24 yr old university student who was diagnosed with seronegative RA nearly 3 yrs ago. I've been on MTX for 2 years. There have been some improvements with my hands and wrist joints since changing to the injected version nearly a year ago but I've still got inflammation. My bloods are all over the place and I have a lot of active RA in my feet (including toes) and ankles. So, now it's time to try a combination therapy again. Hydroxychloroquine didn't touch the disease at all (it just made me faint!) and sulfasalazine gave me a bad reaction. 
So, I'm going to have to do some serious explaining to my rheumy that it's not an issue, although I can understand why she's concerned. 
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