Orencia

[Julieladix]

Hi. I am wondering how long it has taken for orencia injections to kick in for others. I've been taking the injections for two and a half months, and so far I haven't seen much improvement. Feeling kinda discouraged.

[Damaged]

Hi Julieladix, I can only speak for me but was on it for three months then developed Pityriasis Lynchnoids. It is an autoimmune disease but in my case, drug induced (Yahoo).

[Lucy11]

Hi Julie,

It's coming up on one year for me on Orencia and it has helped me immensely. ( I do once a month infusions and will be moving that to every 5 weeks and then every 6 weeks) I'm told the injections work just as well as infusions.

The biggest thing I can say about Orencia is the energy it has put back in my life. I don't experience fatigue at all anymore.

The changes to my body were very gradual. One day I woke up and realized, Oh! This joint isn't an issue anymore and I was pretty bad off with bone erosions in both feet and hands.

I was told before starting Orencia that this particular drug can take 6 months before it reaches full potential and true to form it took about 7 months before I went into remission. I no longer get even a hint of morning stiffness and am able to exercise again. The best thing for me is that I haven't experienced any side effects from this drug whereas I never feel 100% on MTX- even at a low dose and have been able to drop to 7.5 sub q injections. So far I haven't had any infections either.

I also realize this may not last but I'm doing everything I can to help by looking after myself with diet, exercise and stress management. I'm a never smoker and was never overweight which my Rheumatologist insists helps the drugs work.

I sincerely hope it all works out for you and you're a little less anxious about not seeing results yet. It's a tough call on how long you and your Rheumatologist are willing to wait and all I can do is offer what my experience is but you and your doctor will need to figure out what's best for you.

Big hug.

Lucy.

[Julieladix in reply to Lucy11]

Thank you Lucy. I'm a non smoker, and have never been overweight. I've always been very active. I was on humira for 13 years which put me into remission. It just recently stopped working and I've had to switch to the orencia. You have given me hope that the orencia might still work. I have heard it can take quite awhile to work. I guess I have to stop comparing it to the humira, which started working almost immediately. Glad the orencia is working so well for you!

[Beviejon1 in reply to Julieladix]

When I started orencia I was told give it time.Took 5 to 6 months for me. Hang in there.

[Julieladix in reply to Beviejon1]

Thanks. I'm glad to hear that orencia works for you. I am going to continue with the orencia for several more months. Hopefully it will kick in.

[Beviejon1 in reply to Julieladix]

It worked for me for bout 4 years.I'm off biologics right now.

[Lucy11 in reply to Beviejon1]

Are you off Biologics because of a taper to reduce meds or are you off due to infection or adverse reaction?

[Beviejon1 in reply to Lucy11]

Just didn't seem to be working.

[Lucy11 in reply to Julieladix]

He offered 5mg of prednisone daily but I refused. It's not for me. He then said he could do a few local steroid injections in my thumb and both feet. I got mild relief for about 3 months from those but didn't want more.

He also offered Celebrex which I used very sparingly. He said 2x 200 mg but I would take only one at night maybe twice a week.

He also wanted to up my dose of MTX from 12.5 mg to 15 which didn't go well for me.

You've had RA a lot longer than I have. I'm still surprised that Humira worked as long as it did for you. I was initially put on Humira but when I changed Rheumatologists my new one wanted more disease control and thought we should try for remission I was only on Humira for 2.5 months.

Have you ever used prednisone or gotten steroid injections? If you have only a few joints that are really bothering you perhaps this might help? As I said, I personally stay away from oral prednisone but I would consider a local injection again should I ever need one in the future.

Best

Lucy.

[Julieladix in reply to Lucy11]

Hi Lucy. Yes I have tried local injections to a inflamed joint. Most recently I had my right wrist done, but unfortunately it hasn't helped much. Right now I am taking 5mg of prednisone daily. I don't like to use it either, but I'm still battling a flare that we can't quite get under control. The humira was great until this past winter when I became sick with a bad cold that caused a sinus infection, and ear infection. Guess my immune system went haywire. I had to come off the humira for over a month. When I restarted it, it just wouldn't work. I went into a terrible flare. Which as I said, I'm still dealing with. Before starting the orencia, I did try enbrel. I felt it was helping somewhat. My hands and wrists were not bothering me very much. My doctor didn't feel it was helping enough after two and a half months, so he switched me to orencia. It's been not quite three months, but I don't feel any relief. Actually, I feel that I may be slowly getting worse. At least my hands and wrists. I'm hoping that one day I wake up and feel better. Orencia takes so long to work, if it even works at all. My doctor wants me to give it at least two more months. I hope it's not a waste of time.

[Lucy11 in reply to Julieladix]

It's funny you say that as I thought Humira was working for me as well and when he suggested to switch I wasn't sure what to do. I was put on Humira only a month after my diagnosis so I was still learning loads of things.

I was the one who suggested Orencia. My doctor wanted my to pick between Remicade or Mabthera (rituximab) but I wanted to try Orencia first and he had no objections. In the end, it was the right thing for me but it was very hard wondering if I, too, was wasting time.

Did you test positive for anti CCP? Do you have any bone erosions?

Also, I never get raised inflammatory markers, both CRP and ESR are always incredibly low. How are yours? If they show up for you I would imagine they are quite high?

Another thought is that I met a girl recently here that is in her first flare and the doctor gave her a steroid taper starting with 30 mg and gradually reducing to 5mg over one month as she was similar to you and just couldn't get it to calm down with only 5 mg. Would this be an option for you?

[Julieladix in reply to Lucy11]

Yes unfortunately I do have bone erosion. I've had ra for 36 years. My last esr level was 54. It only came down 4pts from previous test. I can take more prednisone if I want, but I'm trying to keep it a lower dose because of side effects.

[Lucy11 in reply to Julieladix]

Do you or your doctor have a plan to try another if this doesn't work? If you're RF positive and anti CCP positive Rituximab is meant to work better for that subgroup of patients. Please let us know how you're getting on.

[Julieladix in reply to Lucy11]

Do you know, I don't even know if I am anti ccp positive. I don't even know if my doctor checks that. He usually checks my sed rate and CBC, liver and kidney function. If orencia doesn't work he wants me to try actemra, which I'm pretty sure I don't want to.

[Lucy11 in reply to Julieladix]

I just realized that you were diagnosed before anti CCP was around. It's fairly new and is more of a diagnostic test but is more specific to RA than RF. It's been said that those who test high positive are prone to a more aggressive disease and although there are clinical studies that have proven this to be true it most certainly isn't always the case.

Anyway, it's not hugely important for you as it's clear you have RA but some of the Biologics are know to work better for people who have tested positive for those antibodies like Rituximab.

Since a Tnf inhibitor worked so well for you why don't you try another one like Remicade? My doctor mentioned that even if one Tnf fails it doesn't necessarily mean a different one will also fail. Remicade is an infusion. I'm not sure what country you're in but are infusions an issue for you as far as insurance goes? (If you're in the US). Or do you just not like the idea of infusions?

Xeljanz in pill form is said to be pretty fast acting which is appealing although I have no experience with it. Like you, I would leave Actemra as a last resort. Ask your doctor why he wants you to try that one. It's often because he has more personal experience with it.

I really hope Orencia kicks in soon and you won't have to worry about making another choice.

[Julieladix in reply to Lucy11]

Hi Lucy11. My doctor did mention remicicade as another option. My insurance is great, so there is no problem there. I'd prefer injections, but I'm not opposed to IV infusions. By the way, I'm in the USA 🇺🇸. I will ask my doctor about the anti ccp test. I'm curious about it. Since I'm already almost three months into the orencia, I might as well stick with it. I might be like you where it takes six months to really take hold and work.

[Lucy11 in reply to Julieladix]

As a side note for you Julie, I initially wanted to go with injections which was ok by my doctor but my initial dose had to be by infusion as a loading dose and then I could choose injections.

The infusion went so well for me that I chose to stick with them as it wasn't a hassle at all and is only around 30 minutes of drip time.

After I was on it for 4 months I went overseas for two months and switched to injections. Even though they say they work the same ,which I truly believe they do, the infusions just seemed to work better for me but have no idea why. It's possible to switch back and forth if your schedule demands you to do so.

[Julieladix in reply to Lucy11]

Thanks Lucy. I'll check with my doctor. I've heard from others that the infusions seem to work better.

[Julieladix in reply to Beviejon1]

Hi beviejon1. Are you still on orencia? If so, how long has it been?

[Julieladix in reply to Lucy11]

Hi Lucy . I have a question. In the meantime while you were waiting for the orencia to work, what if anything were you taking to help with your ra?

[Mistydawn]

Hi Juliekadix, it took only weeks for it to work. I took sub cut weekly injections for 14 weeks but then started getting vertiginous migraines (something I had suffered from in my thirties and forties, am now in my fifties. It was a wonder drug fir me, I was back to my normal pre RD self! It took about two and a half months for it to be washed out of my body and the migraines disappeared but my RD symptoms appear to be returning although mild at the moment. With my consultants agreement, I will restart Orencia with one injection every fortnight as at my last consultation in June 2017, my RD was deemed to be in remission.

Mistydawn

[Julieladix in reply to Mistydawn]

Thanks mistydawn. Sorry to hear that orencia caused you migraines. Your lucky though that it helped your joints so quickly. I'm trying to stay positive, but sometimes it's hard. I'm really having problems with my wrists and hands. I'm at two and a half months now, so I'm going to try and continue it for a few more months.

[Lucy11 in reply to Mistydawn]

Hi Misty, was there ever any discussion to try another Biologic? Was the decision to try it again with longer time between injections because it worked so well for you?

[Mistydawn in reply to Lucy11]

Hi Lucy11, I am a petite lady and I suggested that the strength of the medication in the prepared syringe was perhaps too much. I was then offered a monthly infusion as this can be delivered in accordance of the weight of an individual but because of the onset of vertiginous migraines we (Consultant and I) decided against this. I 'negotiated' a fortnightly injection so will see how we go. Consultant did say I was in remission in June 2017!

We did touch upon other biologics but all are known to have the side effect of 'headaches' so we decided to stick with Orencia as from my RD point of view it had been a 'wonder drug'.

Mistydawn x

[Lucy11 in reply to Mistydawn]

Good on you for suggesting every two weeks. I'm also stretching out my infusions in hopes of managing well every 6 weeks instead of 4

Do you also take MTX?

I do hope you get back into remission with little to no side effects!

[Mistydawn in reply to Lucy11]

Thank you. I hope you do tooLucy. No MTX only Orencia (monotherapy). My liver was not happy with MTX

[Mistydawn]

I was told it would take three months to be effective so hang on in there. Yes, I was indeed very lucky for the quick response but sadly having the vertiginous migraines return with a vengeance wasn't fun x

[farm123]

I am on self inject Orencia (Abatacept) and it took 7 months to begin to make more noticeable changes and by 12 months I was much better than before. I had had 3 years of being very uncontrolled and tried various other drugs and really on a last chance so we did keep going and so very glad I did as now things are so much better and it has changed by life around. Farm

[Julieladix in reply to farm123]

Hi farm123. So glad to hear that the orencia is working for you. I can't believe it takes that long to work! I'm not even three months into it! I'm going to stick with it though. Hopefully it will start working. Did your doctor say it could take that long? How were you in the meantime waiting for it to kick in?

[farm123 in reply to Julieladix]

We stuck with it as I had run out of options at the time and I suppose things were improving very very slowly from the point I had reached. I was not good waiting for it to kick in and could hardly do anything. It has taken my WBC and neuts low but apart from one cold that decided to go to my chest I have not been any worse than on any of the other biologics in regards to infections. Farm

[Julieladix in reply to farm123]

Thanks farm123. So glad to have your input. Maybe things will slowly get better for me too.