Hi
I've been advised to start this medication it's felt sulfafalazine isn't working they wanted to put me back on methotrexate alongside it however said no due to methotrexate really not suiting me
However reading the information I have it seems they are very similar ??
Also I see it mentions it may lower immunity should I've concerned re covid
Is this my last option before biologics?
It really is complicated . Methotrexate sulfasalazine and Hydroxychloroqine are from all the same family of drugs so it can be common if one doesn’t work then the others don’t. You have to fail 3 dmards before applying for Biologics s you may need to try first. RA is an autoimmune disease where our immune system goes into overdrive as there is no infection to attack it attack our bodies and the drugs we take are designed to lower our immune systems .
That is not quite right J1707.....you are right in that it is complicated...... but they are the same only in the fact that they are DMards. They act on different types of RA in different ways...it is not right that if one of that trio fails the other two will also fail. Maybe that happened for you.....but that is not the case across the board.
Oh that was what I was told by Rheumy nurse.
But she is YOUR rheumy nurse & knows your clinical history...which only applies to you...not everybody.
One is a immunomodulator- others are suppressing the system in different ways.
Its not the same as a medication, but obviously is a medication that might well relieve your RA symptoms so it is the same. It worked very well for me for years no problem at all. I think uncontrolled RA might well be a bigger issue. I did not get on with MTX but LEF was super.
Where is it you have got this information from cpr? As AC has already said they are both DMARDS but they’re different drugs. I wouldn’t be concerned being on those drugs with regards COVID as you’re at risk if your RA isn’t controlled. It’s not your last option so try not to worry about what is next for you as this might be your magic combo 😊
Sorry I should have been clearer I I mainly meant the side effects I really struggled with methotrexate are all listed as side effects to this new drug too eg sickness dizziness hairloss fatigue you also cant drink alcohol with methotrexate and this drug making them seem similar in my head ,! X
Ah ok, lots of drugs will have those as possible side effects but it doesn't mean you will get them and even if you do they may be so mild that you can still carry on taking them. As for the not drinking alcohol then I think that's a small price to pay for getting your RA under control and it is only whilst you are taking the drug early on. If your bloods stay ok then I was told that I can drink alcohol but not to excess. It really depends on how your liver copes.
If you read the potential side effects of any medication they'll probably list diarrhoea and constipation, hair loss and unwanted hair growth. You get my drift but LEF is fairly new and I used to drink the odd gin or glass of wine more frequently and its OK the same side effects are listed for AZA, Etanercept so try not to worry its really a case of giving it a good go.
Only your doctor can know that....there are other new drugs besides Biologics that might be more suitable...but Leflunomide does seem to be taken successfully by a lot on this forum.
No doctor will be prescribing a drug that could cause a problem with Covid...so put that out if your mind .
I’m still on rituximab, and it’s been bumped up to every 4 months ( was every 6.)
I take 1000 mg per bag. ( liter.)
I did this even in the height of the outbreak in San Antonio Texas in June.
My next infusion set begins this coming Monday, Oct 5th.
So far so good, and I even had a presumed positive case of Covid the first week in July. ( I tested negative for the gold standard PCR test and a few days later tested negative again for the rapid one which yields results in an hour. The rapid one was administered in the emergency room- since the first one was negative, I needed to know what was wrong with me, why I was running fever, why I was in a rash, cough, etc.- since I’m on rituximab. )
All blood work was negative for flu, wbc count was normal...
my rheumatologist said to assume it was a presumed positive case. Our town was in a horrific surge during those two weeks. I’m in our local hospital 3-4 times a week getting blood levels checked for warfarin, as I have Very severe antiphospholipid syndrome. ( also Subacute Cutaneous Lupus erythematous. Thankfully it’s not systemic - unless I’m in the sun. For some reason I’m remembering you have lupus also?
The very good news is I did very well with whatever it was I had. I’ve had bad colds that have made me feel worse. ( I got Very lucky.)
My rheumatologist in San Antonio Texas- horrifically hit with Covid- said that he had ( at that time) 11 patients who were immune suppressed come down with it- only one hospitalized but recovered well. The others reported symptoms about like me. Fairly mild. ( mild when compared to actual Flu.)
His colleagues in his rheumatology group reported about the same .
Even though it is a very small sample size ( 6 rheumatologists in the group) he told me they theorize that “ perhaps there is an unrecognized response in these patients that is helping them manage the virus.”
If I did indeed have the virus, I can only wish everyone the Good luck I had.
I struggled greatly with side effects of MTX, both tablets and injections.
Other than a raised cholesterol level, I've had no side effects at all from leflunomide.
I’m on mtx and lef together and have been since April. Adding in the lef was the only thing that enabled me to get off pred, even at a relatively tiny dose (10mg daily). The only side effects I actually get are skin issues: I have mild adult acne anyway, and have been very prone to boils, abscesses and cysts since my teens, which the lef seems to take advantage of somewhat. When we were looking to tweak my meds in July, my rheum refused to put the lef up as a result of the skin issues, but I definitely still rate it for myself in spite of the fairly regular eruptions it causes me.
If you read the side effects profiles for many of the drugs used to treat rheumatic illness, they all have similarities, but you also have to bear in mind that due to the way drugs are trialled in the U.K., some of the things listed on any PIL will actually be entirely coincidence, rather than being bonafide side effects caused by the drug in question. How can you prove that a headache suffered during a drug trial was a direct result of the drug in question? Why do people in the placebo arm of drug trials routinely report side effects when they’re not even getting any medication? Where the US list the most tenuous things that could possibly happen purely to stop people suing if they get a side effect not already listed, we list things because the scientific community here are more cautious by nature. If someone reported popping rainbows during a trial (and there was evidence of said rainbows!), it would get listed on the PiL regardless of whether they could prove the drug was the cause or not.
I have done MTX pills and injection then sulfasalazine which both caused bad side effects but different and now on Lefluomide and now as causing blood pressure readings that are way to high now waiting to hear from my consultant.
I am just unlucky on side effects so worth trying the next one as there is one drug out there for us somewhere 🤪
Concerned already and I haven't even taken this drug 🤣🤣 I was asked whether I wanted to start a family
.... I don't just now but may in the future what happens if I change my mind and am on this med ? X
I had really bad side effects from methotrexate and it had very little effect on my R.A. I switched to leflunomide and had no side effects at all and it is the single drug that has had the biggest effect controlling it. My daughter (who has JIA) also recently switched from methotrexate to leflunomide for the same reason and she too has had no side effects. I hope it’s the same for you.
The question about planning to have children is probably because leflunomide has a much longer half life than methotrexate. I believe they recommend stopping leflunomide two years before trying to conceive. However, there are ways of ‘washing’ it of your system. Therefore changing your mind on children isn’t an issue but will require some forward planning. I would speak to your rheumatology team about current guidelines on this for reassurance.
cpr02 if you change your mind then you can stop taking any drugs that may affect the baby, that's what I did and my RA really improved whilst I was pregnant. Your Doctors can advise you when that time comes. I would stop worrying about "what if" and concentrate on taking the best meds for you to get your RA under control and your life back 🙂
You would be advised to come off any contra indicated drug for pregnant women. Different drugs have different time periods you need to have stopped taking them before you start to try to get pregnant.
But do you talk all this through with your rheumatology nurse ....with some drugs you have to be off that drug for a year or more to clear the system.
Hello, I have taken all three. Methotrexate gave me so many side effects - hair loss, severe depression, and more. Plus, it did very little for my pain. Next Sulfasalazine - I was sicker than a dog for about a month, then that subsided. It didn't do much for my pain either. I got a new rheumatologist and she put me on Leflunomide. It worked! I don't recall any side effects and was very happy with it. (Honestly, I think most of these drugs can have an effect on the immune system.) I was on it for about two years. I have a couple of glasses of wine every day and my doc was concerned about my liver, otherwise I would have stayed on it. I am a Lymphoma survivor so biologics are out of the question for me. I am now on hydroxychloroquine and it's working fine for me. I hope this helps a little. I would stick a fork in my eyes before ever going back on methotrexate. 😊
The snap! Xx
Your reply just confirms what is said on this forum .....if methotrexate disagrees with somebody they shout long and loud and tell everybody .....but they rarely post how well they do on it.
I’m guilty of that .....I had 7 very successful years on it...but I just got on with my life I didn’t tell everybody how good I was finding it.
If methotrexate works well for you it’s one of the best drugs you can take...So if you are offered it say “yes please“ .........please don’t refuse to take it just because it didn’t suit somebody you read about.
,
I ve taken it really didn't agree with me won't go into it much as I don't want my experience to put someone else off xx
Absolutely! You also need to ride the initial side effects. MTX is really successful in controlling the RA, but it's a case of finding the correct dose. I had an awful time with it initially and ended up with breathing issues after 6 months. Stopped, then perservered at a much lower dose. Injections suited me better, and my RA has been largely controlled over the last year.
Perseverance is often the answer. Many were the the times I walked out of my rheumatologist‘s office thinking why did I give in and say I would take xxx for a bit longer - then a few months later I was really glad I did!
I will shout about it because no one listened to me when I talked about how depressed I was getting and that my hair was falling out almost as fast as from chemo. I don't want anyone else to think it's all in their head if it happens to them. I did not have any success with this drug so no reason for me to tell anyone to say, "yes please". This person asked for opinions on the drugs and I gave mine. You are welcome to give yours, but I don't understand why you think you have the right to criticize my experience and opinion.
I have been on MTX for 4 years now starting to have a few issues over this last year. I keep a diary and now know that it is causing some problems not the RA as originally thought. I’m still on it until I settle on another drug and they can reduce or stop MTX. Sulfasalaz and hydroxychloroquine meant I ended up in A&E . Why should you take a drug that destroys quality of life just to benefit RA when there are other alternatives. I am a believer if you don’t let yourself be heard you are forgotten about and how can they help if you say nothing. Giving your opinion is not being negative it just wasn’t for us sharing our experience good and bad helps us all .
As I & many others have said It doesn’t suit everyone...but you will never know if you don’t try it.....& more importantly stick with it if you don’t miraculously feel 100% better immediately.
I was just suggesting to try remember to be kind, & understand not everybody can get past reading some of the really scary information offered here.For example you just suggested “almost as bad as chemo”......don’t you think that might put off someone who was already apprehensive?
Let’s just think before we scare the heck out of people about to start Mtx.
After all.....Dr Google already does that brilliantly!
First of all, the woman ASKED for opinions. She didn't qualify it by saying only positive opinions. She has already tried mtx and it doesn't suit her. The "almost as bad as chemo" was referring to my hair loss. I lost almost half of my hair and for most women that is an important possible side effect of a drug. If someone gets "put off" by reading about someone's experience with a drug, they probably shouldn't be reading any comments on here. And, they certainly should not be asking for opinions.
I personally think that if someone is on here asking for opinions, then they will accept that the responses given will likely include the good, the bad and the ugly, so maybe you should also try to be kind and accept other peoples answers to the question rather than jumping in and making them feel that they've said something wrong. At the end of the day, we're all here to seek advice and it's a positive forum to hear both the positives and negatives from the responses and people are simply trying to help someone by responding to a question with their own personal experiences. I completely agree that as humans we tend to only talk about the bad effects however I think this forum has a mixture of both and hence everyone's opinions and answers should be accepted, even if you don't feel it's right.
Whatever I said three weeks ago still stands ...I think my opinion is as valid as the next persons...I’m sorry you didn’t like it...but that’s the thing with this forum.....we all say what we feel without anyone taking offence.
Yes I think you've made it clear how valid you think your opinions are which is fair enough... However If your above comment is true then maybe you should re-read how you appear to have upset others by telling them what they can and can not say on this forum about their own PERSONAL experiences when ASKED.
Well I have obviously really upset you for which I am sorry, but I am far too busy to trail through back comments.....disagreements are healthy.
If I have upset so many people....why haven’t they told me?
Replying that they disagree with me is all part of how this site works.It’s no good if we all agree all the time .... that would help nobody....so let’s just agree to disagree shall we?
I'm absolutely not saying everyone should agree and of course different opinions are healthy, however I am saying that we are ALL entitled to say how we feel and voice our OWN personal experiences (which will obviously be very individual) and hence we should be able to do that without someone commenting on it to make them feel bad for simply answering a question, just like Sharon did. So I'm actually not upset at all, I just felt it wasn't very kind for you to tell someone they shouldn't have written something when they are responding to a post asking for people's experiences. But as you said, you are too busy to read back and see her message so yes I will happily will leave it there.
Hi. I've been on leflunomide for about 8 years. It is nothing like methotrexate for me. I have no side effects from leflunomide. I found my immunity to be ok with it. Biologics reduce immunity much more. I take biologics as well now but for 6 years leflunomide kept things at bay. Good luck.
I’m on hydroxychloroquine, sulfasalazine and leflunomide after methotrexate didn’t work for me. Super combo so far 🤞
Hi, I was on Methotrexate for over 10 years until it gave me breathing problems and almost collapsed lungs. They switched me onto Leflunomide and after 5 years It has not caused me any problems.
Sulphasalazine didn’t work for my Psoriatic Arthritis.
Be careful to avoid people and places though with Covid 19 due to depleted immune system (I take Humira injections too) and I’ve never had the flu injection after one experience Made me very ill for weeks. They say the flu jab is a dead vaccine but I reacted to it and I will not take it again.
Hi cpr02, all this info is so helpful. I was told by Rheumy it is better to be on a medication re covid than not if that’s any help.. like one of your other replies I did fail 3 DMARDs before trying out biologics, I did very well on my first one for about 5 years when I wouldn’t off known I had RA.. I hope you find your answers on your journey as like others say we are all different, what works for one doesn’t for another, if we all reacted well to our first drug our rheumys would have an easy job!!
I am on Leflunomide. I was changed to this because I couldn't tolerate MTX. I have found it gentler and have had no real issues with it apart from a slight skin irritation when I first started it which lasted for about two weeks and then was gone and I have had no problems since. Yes, it does lower your immunity so I have been advised by my conslutant to be extra cautious when out and about due to Covid. Hope this helps, hope it works as well for you and it has for me.
All the best
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