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No ending on site

Following me visit with my rhuemy last week, I was prescribed leflunomide, on top of the Mtx, enbrel and all else I take. He had now called to say that I’ve to stop the enbrel and will begin secukinumab.

These are two drugs I’ve not experienced.

Is anyone able to advise how they are ?

Thank you

Marie

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Typo- no ending IN site !!

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Hi Marie.

I had to stop Leflunomide after 11 days due to a bad reaction.

I started secukinumab (cosentyx) at the end of may this year and altho I don't feel there's any improvement, the consultant thinks that the inflammation is starting to show signs of calming down after a recent scan.

I have to stay on them for another 3 months then she will reassess at that point. Hopefully they will work soon. Some people think it's a fantastic biologic.

I take 300mgs (2 injections) every 4 weeks altho you will get loading doses first.

Good luck. It's a bummer having to try new Meds.

X

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Oh thank you so much for sharing your experience. For some reason, the thought of additional meds’ are making me anxious ?

Can I ask, how did you react to the leflunomide? Did you need to have the wash out ( yuck) once taken off it?

Marie

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Didn't need the wash out Marie as they felt I hadn't been on it long enough to warrant it.

I developed an all over intense itch & rash and just wanted to claw my skin 🙊

I've never been great with any medication.....my body just seems to react to anything. I'm a walking disaster area 😂

Sandra x

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God, that must’ve felt terrible!

It must be hard for you Sandra, treatment wise ?

I’m not so bad , pretty tolerant of meds generally so here’s hoping it’s the same with the new stuff.

Take care

Marie

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It can be annoying Marie.

I've failed on Methotrexate, Leflunomide, Benepali, Cimzia & Stelara over past 3 years 😢 and don't tolerate pain relief well either.

Following a recent knee replacement I asked the doctor to take me off the morphine pump as I was so terribly sick. Ended up just using ice for pain relief during the day and a stronger painkiller at night.

I'm now on Sulphasalazine & cosentyx.....I am forever hopeful 🤔 x

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Poor you, that must have been tough. My experience of TKR is that it is a very painful thing.

It can be a really tough journey, can it not?

I count myself lucky I’m so far as in terms of tolerating pain relief, I fare much better.

Like you, I choose to remain hopeful. Apprehensive at times, but hopeful!

Take care you

Marie

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Annoying isn't it? Here's hoping these 2 new drugs will put you in remission.

Hugs to you

Sue

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Thanks sue. No idea why I’m feeling so anxious about them? I trust my rhuemy and would always go with him.

Hope things remain ok for you?

Marie

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This disease and the medications make everyone anxious, so you are not alone in feeling this way.

As for me, well I'm on 2000mg sulfa a day. Mtx was stopped at the begining of August & my hydroxy was stopped in May. I did have a Leflunomide RX at the pharmacy back in Feburary, but I never had to fill it.

My rheumy has suggested that I should start lowering my sulfa to 1500mg a day after the Thanksgiving weekend. So that means this upcoming Tuesday Oct 10th. At first, I was so excited about doing this, but now I'm scared to even try. For me, it's not about what caused my RA diagnosis, that's for the scientist of the world to discover, it's about me not wanting to be a guinea pig. I'm scared about being in pain again. So now I'm terrified too.

All the best to you Marie,

Sue

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Cosentyx looks like a good drug especially for psoriatic arthritis which is what I've got. How long have u been on the embrel? Did it just not help at all or not enough? I've been 3 months on benepali...kind of beginning to work ( I think) difficult to really tell as still on steroids. Cosentyx would be one of my next possibilities if all fails....good luck!

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Hi

I have a diagnosis of Ankylosing Spondylitis and rheumatoid arthritis- diagnosed maybe 3 years ago.

Both , esp the RA is very aggressive and proving difficult to get under control.

This has resulted in both hips being replaced (at same time), both knees being replaced ( at same time ), three months after hips. Tendons in ankle vein cut and reattached, pins in ties and bone taken from side of foot- all within two year period. I’m now awaiting elbows being replaced.

I’ve also had aggressive therapy, no less meds- various DMARDS, steroids and this will be my 3rd biologic, within 2.5 years. Initially I was on humira, did nothing then enbrel for past year, Did not a lot so now escalating therapy, apparently.

This will be in addition to Mtx (20 mg), arcoxia etc .

Apprehensive, but I’ll give it a go.

Best of luck in your journey

Marie

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Pins on toes- not ties!!

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Oh my dear! I had to read your post twice to see how many operations you have had.

I have had Rheumatoid Arthritis for 28 years. I believe an operation that went horribly wrong triggered it initially but I don't know for sure.

I have taken 20mg of Methotrexate continuously for all of that time apart from the period after I got double pneumonia I think it was two years ago now.

I have also taken 2000mg of sulfasazine continuously apart from the same period above.

Maybe ten years ago they tried me on Vioxx

And I started getting neck, jaw and shoulder pain. My Rheumatologist moved his practice so it took me a little while to find another one, then I read that Vioxx had been taken off the market because of side effects to the heart?

8 years ago they started me on lefluonemide, then as my ESR continued to rise I tried Humira.

I felt great on it, energy level went up, but then I started getting leg ulcers and a bad case of cellulitis so after discussion with my Rheumatologist I stopped taking it. Six months later, my ESR was still climbing so I was signed up to have Orencia infusions at home.

It knocked the stuffing out of me, I kept going for four months thinking it was going to improve but it didn't. My ESR went down but I felt like I was in bed for twelve days after each dose, feel a bit better, then have the next dose and down I would go again.

The last two infusions I started getting a lot of Angina, so much that I stopped the last one mid way and went to Hospital. I didn't have a heart attack but my heart didn't like it, so I went off that.

I won't try anymore even though my ESR continues to climb.

I take a booster course of prednisolone, twice this year in winter but just my regular medications and Tramadol 400 mg a day slow release.

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Wow, sounds like you've really been through the mill. Hopefully the cosentyx gives you some relief...like I said it's supposed to be the best new drug for my condition but also for ankylosing spondylitis . First drug specifically made for them ,everything else is more or less targeted for RA. Definitely give it a go. It's also supposed to have the least side effects out of all of them. Keep us informed about how you get on and hang in there.

All the best

Anya

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Will do and thank you.

Marie

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