New drug: Hi hope everyone is well or as well as can be... - NRAS

NRAS
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New drug

Ninnin67
Ninnin67

Hi hope everyone is well or as well as can be. Im in a state at mo,just had lovely chat with RA consultant who wants me to take leflunomide with steroids i declined these ,along side my metho and stop hydroxy. Im worrying as leflunomide seems to be quite a risky drug. Im dreadful with drugs anyway as b4 RA 14months diagnosed i took none. The help of others on this site has been a great help to me,so plz any advice would be lovely. Thank u stay safe x

21 Replies
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Personally and this is just my ideas, I would follow the doctors advice !!!! Hes an expert. I went from being in a wheelchair to being near normal. I'm on leflunomide with no problems for years with TCZ infusions and steroids.

Drugs do have side effects but isnt it worth a try when you are being monitored closely and RA can damage your body so much , when they have treatments for RA?

Good luck with your decisions

I do agree with Allanah; I would always be guided by my rheumatologist's advice and I'm sure he/she would not prescribe what you term a "risky" drug if it was not needed. All drugs are risky of course, even paracetamol, ibuprofen and the MTX you take now!

The danger with not taking what's suggested is that your joints will almost certainly continue to deteriorate and become deformed. Don't forget RA also affects other parts of the body too and if unchecked there is likely to be damage to organs etc.

The drugs I'm taking you would consider extremely risky but they have given me my life back so that I can continue to live independently; that's what's important to me.

Personally I would listen to your Rheumy. Yes drugs have side effects but untreated RA doesn’t bare thinking about. You are well monitored. Myself I rather participate in life than spend the rest of my life in pain or immobile. If the drugs don’t work for you then you can stop but if you don’t try then you will never know if it’s going to be the one that gives you your life back.

Its wonderful grab it, it changed my life then due to something else I can't take it anymore. Nothing to do with LEF. Normal life for years with RA. It has some side effects but for me were minimal what have you got to loose but pain and swelling. No idea why you think its too risky its more expensive than MTX and thats probably why its a second choice. I'd say don't judge it without trying and it can be washed out although my RA Consultant said that was rarely needed as its just a minute trace after a few days so if your not allergic rarely used.

Ninnin67
Ninnin67 in reply to medway-lady

Thank u im worried as hav severe anaemia which apparently is not recommended with this drug,yet they dont appear concerned. X

I've got Pernicious Anaemia and my Consultant knew that. Check again as Anaemia is treatable either by tablet or injection. Ask to be tested for PE its horrid to feel that ill and the treatment works well. GP can check for you as can the RA team.

allanah
allanah in reply to medway-lady

They check your bloods regularly and I get b12 injections x

medway-lady
medway-lady in reply to allanah

Me too. xx

Bless u ive iron defiency take meds x3 daily,oh to be healthy again,keep safe

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I take Leflunomide with MTX and steroids. Just watch your blood pressure, as Lef and Pred both can make it rise.. I have no other problems.

It’s so difficult making decisions about changes to medications isn’t it but then your rheumatologist wouldn’t recommend the change without good reasons either.

For me having time to think about something and then making a list of any questions or concerns I have always helps. It is such a fine balance between keeping our RA under control against side effects and other health concerns. x

I have started a new trio of drugs over the past month. Steroids, Hydroxycholorquine and last week Leflunomide because MTX didn't work for me. I was hesitant about the LEF as wondered why it wasn't used as often as MTX - however.... on MTX I was loosing my life - days blurred in fatique, joints still hurting. So I have bitten the bullet and started LEF - so far so good, except for some pain in the tummy - I am taking Omeprazole for the tummy and it's doing the trick. Others are right, its great to be informed and to question but there must be an element of trust with the professionals supporting us. If this doesn't work for me then it's down the biologic route. To say it's a journey is an understatement, I'm now meandering down a country lane hoping I stay there as this latest combo is doing a cracking job on the joints and fatique!! Let's hope the same works for you if you decide to try it. Good luck.

medway-lady
medway-lady in reply to RosieA

The LEF worked worked better for me than the Biologic Etanercept. But can't have it now its more expensive I think than MTX.

RosieA
RosieA in reply to medway-lady

So sorry you can't take it anymore although it worked well. I assume it wasn't suiting you. Yes! I think it is more expensive - especially if you get a brand that is easier on the tummy than others.

No Rosie it suited me very well, but something else happened that caused an AKI and so no longer able to take it, that and a lot of other meds have to adjusted. Its trade name is Arava now you could have party with that. I only ever had that so no idea if it has a generic type. It did hurt worse for a few days a couple of weeks in the I woke up and knew something was better. No fatigue, pain or swelling and stay like that for years. No hair loss with it but please make sure you get your bloods done on schedule so if a problem crops up it'll be picked up. Be optimistic and take at night with a glass of water not a few sips as it tastes vile if it doesn't go down its only a small pill but I got on stuck and yuk! xx

I would take any drug they offered right now I’m in hell!

Do your research and make your own decision.

I tried Leflunomide and it came with serious side effects for me. BUT we all react differently, we are different. So I at least give most things a try - unless my research results tell me otherwise.

I never blindly follow advice from anyone, it is important for me to be as well informed as I am able and the internet affords us this luxury, when used with caution.

I would agree with allanah. Amazing results for her. Definitely worth following advice. Good luck and think positively. x

I just wanted to say that I know exactly how you feel . I’m paralysed by the fear of taking drugs and mtx not working so I stopped it after 7 months .I’ve not seen a consultant since last Oct and nurse appointments were cancelled ( not by me) I’ve now got two more swollen joints and know I must go back but dreading it. Please let us know how it goes for you. Sending you best wishes.

Leflunomide in my opinion is the best of all the meds. It's the only one I havent had bad side effects from. Uve been on it for about 7 years now. It works for me. Good luck.

Hello, I have been on all the DMARDS inc metho and I must say i had a reaction to all of them. I also feared that Lef. Would be the same but I must say I have had no side effects. Everyone reacts different but as someone who finds it hard to take most of these drugs, give it a go.....I was diagnosed 4 years ago at the age if 39 so wasnt expecting this diagnosis but my RA team have been very supportive which is a massive helps as no one else gets it unless you have it hey....best of luck !

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