Golimumab (Simponi)

[premierscfc]

Has anyone got any recent experience with above biologic, I'm so desperate for it to work as my previous treatment (rituximab) had no effect.

The information leaflet says it can take up to 12 weeks to work, has anyone had it work any quicker?

[Neonkittie17]

We had a young lady on here a few years back who lives in Europe who has had great success with Simponi. I don't think it took 12 weeks to take effect. Happened quite soon for her but we're all different. Sadly she's not on here for some time now. She's going very well with the RA though. I'm sorry to hear Rituximab didn't do anything for you. I've been on it just over three years and it's been the most effective thing I've taken for stopping all the RA inflammation. Hoping Simponi starts working for you very soon.

[AgedCrone in reply to Neonkittie17]

Ditto Neonkittie..I'm in the unit hooked up to my RTX infusion right now......4th course & like you it has been the best treatment I have had in18 years.

I just hope it lasts.

[Neonkittie17 in reply to AgedCrone]

Same for me AC re the best med so far, but I'm still anxious about the fact they will try make me swap to a biosimilar. Not looking forward to my clinic appointment with the rheumy next month but I'm going to take a letter in with me for her which will detail why I cannot be left to plummet if I have to come off a biosimilar if it failed and find another treatment. I get joint damage very very quickly in s few weeks. I can't face that again. Has your rheumy team said any more to you about biosimilars?

[AgedCrone in reply to Neonkittie17]

No my Rheumy hasn't but if the NICE rules are the same as when I read them a few months back it said if you are already on a Biologic successfully, to change to a Similar has to be "with the agreement of the patient".

But new patients can be put straight on it. My rheumy nurse says so far some new patients have not had any dreadful side effects...I am going to show her Dereck's dreadful photo he posted awhile back...if she mentions anything.

If my Rheumy does broach the subject I will just say No. I don't know how far that will get me, but after 18 years I will put up one hell of a fight to stay on RTX as long as it keeps me in remission.

[Neonkittie17 in reply to AgedCrone]

I hope so too!

[LadyL0u]

Hi, that's what I'm on and it did take quite a while for it to start working properly. In fact I asked the rheumatologist if I could try something else because I didn't think it was doing anything, but she thought I should stick with it a bit longer, which was just as well as it did kick in eventually! It was over 2 months for me and it wasn't an 'overnight miracle', but I think I was expecting dramatic results, so I don't think I noticed the fact that I wasn't experiencing as much pain as normal. It did eventually dawn on me that I was actually feeling a lot better, and that the meds were working, it was a gradual improvement, but they were definitely working! There was also significant improvement in my bad wrist, which was probably also thanks to the biologics. So yes, it does make a difference, but it did also take a few months to kick in for me. I'm only on 1 injection a month though, so it may be faster if your dose is more frequent than mine.. It has helped me, so hang in there, hopefully it will kick in for you too. Good luck

[premierscfc in reply to LadyL0u]

Thanks Neonkittie and LadyL0u for your replies as it's always better hearing from patients than reading leaflets. I have my first monthly injection on Nov 3rd and I have a bad chest cough so hope it's cleared up by then.

[LadyL0u in reply to premierscfc]

Good luck with the meds & gettin shot of your cough. That's another thing with biologics & fragile immune systems, you end up trying to stay well clear of anybody coughin/sneezing in an attempt to avoid pickin up bugs yourself All the best

[Neonkittie17 in reply to premierscfc]

I hope you are soon feeling better and able to start Simponi. Best of luck. 😀

[Neonkittie17]

I hope you feel revitalised very soon after your infusion!

[freckle71]

Hi there.

Simponi was my second biologic as i was forced to stop cimzia due to side effects.

I have been on it for 2 years now and i have to say its brilliant.

I take it alongside MTX subcuts which i do weekly and then simponi monthly .i have been able to reduce my MTX and live a pretty normal life.

It may have taken a little while to work but because i had been on a biologic already i think the changeover didnt make a lot of difference.

Have faith i am sure you will have great results too!!

Good luck xx

[Dag777 in reply to freckle71]

Hi, may I ask if you still take Simponi and are successful with it? I have had 2 injections and think it's helping me but I still have a long way to go.

[premierscfc in reply to Dag777]

I took it for 3 months and it worked really well but unfortunately I had to come of it as I developed a severe rash (all anti-tnfs cause them on me but this was the worse) which meant my treatment was stopped. I hope it works for you.

[freckle71 in reply to Dag777]

Hi there. Yes I have remained on Simponi ever since and it is brilliant for me. In fact now I only take it every 7 weeks instead of monthly alongside my MTX which I still take weekly. I do have the occasional flare but they pass fairly quickly. It’s great to know that life can return to normal with the right meds.

I wish you much luck in finding yours. 😀😀

[premierscfc]

Thank you for sharing your experience, I'm feeling more positive now.

[NicolaP]

I've been on Simponi since Sept 2015, my first biologic having failed on MTX and SSZ. I can't take MTX with it, only SSZ. It has improved things quite a bit but doesn't seem to last the month and still getting some major problems every so often. I did notice an immediate very short improvement, as was very bad when started, but it didn't last that long. Going forward, it has lasted longer but doesn't last the whole month. That may be because I can only take it with SSZ but from what I've read, that isn't that unusual a problem. BUT we are all different and it can affect people differently. Consultant wanted to change me to Tocilizumab last month but having read the side effects, among others, weight gain, high blood pressure and raised cholesterol (not the only ones but listed as side effects unlike on other Biologics leaflets), I was very reluctant because of previous problems with high blood pressure and the fact I've lost 4 stone in weight since my heaviest in 2013 (half of which was caused by being on prednisolone for 13 months). As has been said, the lady in I think Switzerland did have great success with it, as has freckle71, so the fact its not worked so well for me with SSZ isn't cause for being to worried at present. Just to be aware, others have had success with MTX, I've not.

[premierscfc in reply to NicolaP]

Thanks for your reply NicolaP, I had a similar experience with the once monthly treatments😔

I have successfully been on Tocilizumab monthly infusions for just over 3yrs and been on the weekly injections for 7 months, unfortunately the treatment failed at the beginning of this year. My cholesterol did increase but any weight gain was probably caused by my overall inactivity, fortunately I've lost weight because of the constant flare (so every cloud...)

[premierscfc]

Unfortunately the Golilumab has been stopped as I've had a rash which got worse with every injection. They will consider another drug once the rash has cleared up.