Orencia After Eight Infusions | Arthritis Information

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After eight Orencia infusions, I am really getting discouraged.  I noticed a lot of improvement after about four months and continued to feel better until about the last month.  Now, I feel like I'm going backward again with morning stiffness increasing and the general feeling that inflamation is starting up again!  When I go in to doctor in two weeks, thinking about asking about going back to Enbrel.  At least with Enbrel, I didn't have to feel like a "sick" person, having to go to the doctor every month and being so dependent on someone for my medication.  To those of you on Orencia....have you had a relapse, followed by relief, or have you found that once you flare, the drug has just stopped working? 

I feel like this disease is really getting to me (after 40 years) and am so sick of fighting it!  I'M SORRY....I HATE TO SOUND SO DEPRESSING....I guess it's just a bad day.  Heading to dentist for soft-tissue surgery this am, and can't help but worry about how well my gum will heal since I'm now on a new drug.  WISHING ALL OF YOU A "PAIN FREE" DAY AND THANKS FOR JUST LISTENING!   Sharon
 

 

Wow.....40 years. No wonder you are getting tired. It's like, okay, I'm ready to not have RA now.

Sorry, I don't have any orencia advice---I just wanted to be sympathetic. I hope your surgery goes okay.Well the only experience I have to share isn't quite the same, and isn't encouraging.  After 6 Orencia infusions I felt about a 10% improvement, and now after 9 infusions total, that's still all I feel.  I still have all the same sypmtoms, but either slightly less often, or slightly less severe.  I spoke with my infusion nurse about the patients he's had who have done well on it and he says they get more improvement and I should have seen it by now.  Both he and my doctor agree that the slight improvement I'm getting isn't enough to be doing this to my body. 
 
My doctor wants me to go on Actemra when (if ever) it finally gets approved and I have reluctantly made the decision to do so.  When I see him tomorrow, I'm going to see if I should stop the Orencia in preparation (I had to wait between the Rituxan and Orencia) or keep taking it until we know more about the approval date.
 
I'm kind of curious if they will even let you go back to Enbrel if they decided it wasn't doing enough.  For me, the Enbrel was horrible, and I am really happy with the infusion arrangement.  Every month the infusion service delivers my meds and infusion supplies, then my experienced visiting nurse comes right to my home, it only takes about 45 minutes, and then I'm just a little tired for the afternoon.  If you stick with an infusion med, maybe you could see if there's an infusion company like that in your area.
 
Sharo, good luck with your surgery, I hope it goes smoothly.  And let us know what your doctor says about the Orencia and Enbrel.  I know it's depressing and frustrating, but hang in there.  Sending you gentle hugs.
 
PS - I just noticed your sig only has the Orencia.  I'm guessing since you've been battling this for 40 years (wow, I can't imagine!) that you've already tried the NSAID's and traditional DMARD's, but if you haven't tried them all, it might be worth it to try another one.  Every few years I find whatever NSAID I'm on doesn't seem to be doing it anymore, but there are so many of them, that I always find another one to work for me.  It doesn't make it all better, but every little bit helps.

Sharo,  I sympathize with you also.  I felt the same way when Enbrel did absolutely nothing and the pain got worse every day. I have high hopes for the Remicade I just started.  I think there is the right drug out there for everyone and for many of us it has been a very long road to find it but it WILL happen.  Hang in there!!!

Linda

Innerglow and Gimpy,

Thank you both for taking the time to respond and for your good wishes.  I appreciate it.  Had dental surgery...went fine, but now the test is to see how the gum tissue responds.  Also the decay was more extensive than he thought (under a bridge).  Dentist is hopeful that he got all the decay, but he said it is impossible to tell for sure.  Will watch closely.  Interglow....as you have guessed after 40 years I have been on most of the drugs and have been fortunate in responding.  Have had to change from one drug to another throughout the years as they eventually don't work as well.  Haven't been on Rituxan and really don't want to do that one unless I have no choice.  Sounds like you and I are at about the same point with our Orencia treatment.  The last couple of days I have been taking Aleve twice a day and that seems to be helping quite a bit.  I quit Methotrexate a few months ago as it makes me feel so medicated.  A few days ago I was ready to thrown in the towel with Orencia, now I'm not so sure.  I wish you good luck with the Actemra....there is always that hope that a new drug will "do the trick."   Please keep us posted on your progress.  Thanks again!  Sharon

 

Maybe the methotrexate was helping?...I also went off methotrexate....I did this when I started my Beteseron injections...I felt it was to much...(beteseron is for MS)...they had me on methatrexate for MS not for RA...I have just been recently DX with RA...now I wonder about this whole MS thing....wonder if methatrexate kept RA in check and by stopping caused this flair from H#ll i am in...Best of luck to you. I really hope things do a 360 for you.Sharon, not to re-hash if you've been on them all, but mtx didn't do anything for me so I tried Arava (which gave me horrible side effects) and now I've been on Imuran for awhile which might be helping a teensy bit, but I'm not sure.  Anyway, supposedly the biologics are more effective when paired with a traditional DMARD, so you might want to try it with the mtx, or one of the others if you haven't tried those before.  That is great that the Aleve is helping a bit.

Hi Sharon,

I was on Humira first which caused me mega lung infections, then went to Orencia for 6 infusions, my Rheumy said it would take about 4 months to start to notice a difference. I didn't notice any changes after 6 and felt it wasn't going to get any better.  After talking to the nurses about others that were on Orencia, and much thought, I decided to take myself off it.

Wow 40 years with this disease, I wish you good luck with what ever you decide to do...................Annie
Thank you all for your kind remarks!  I know 40 years of RA sounds terrible, but I really didn't sustain major damage until about 10 years ago and mostly in hands and feet.  (In case you are wondering, I'm 65.)  Even with that, I can still exercise regularly (mostly elipitical, bike or some treadmill) and we go dancing a couple of times a month.  Even with RA, life is definitely fun and for the most part pretty normal.  I think the hardest thing (more than the discomfort) is looking at the deformity in my hands, not being to wear cute shoes, and not wearing a lot of jewelry that draws strong attention to my fingers.  I guess what I'm saying is that my vanity is a real issue--one that I continue to fight.  Normally, I just try to count my blessings and not focus on it, but this last year has been trying.   I don't like to post much unless it can be something positive.  I think the best thing we can all do is not give up, but keep fighting our way back up when the RA knocks us down.    My best to all of you.     SharonCan't the dosage of Orencia be adjusted like Remicade?  Maybe that might help if it's possible.  I don't know much about it but it looks like it's the next in line for me too.  I've already done Kineret, Enbrel, Remicade, Humira, and back to Enbrel (with no relief so it doesn't work anymore).  I have pretty high hopes for Orencia and don't want to think of Rituxan yet because of all the negative press.
 
Bob H.
Bob, as far as I know, the Orencia dose is static based on weight.  Doses are 4 weeks apart (except the initial loading doses) and is as follows:
Patient weight <60 kg (<132 lbs), dose is 500 mg
60-100 kg (132-220 lbs), dose is 750 mg
>100 kg (>220 lbs), dose is 1 gBob & Innerglow,
 
Interglow I believe you are correct that the dosage is based on weight, but I'll ask on my next appointment if there might be the option of an increased dose.  Right now I am at the smallest amount (one vial). 
 
Bob, I would definitely try Orencia before going to Rituxan.  I know it is working for some people, but I think there are less allergic reactions on the Orencia and it may be a little less risky.    Also, my nurse practioner said it is easier to go from Orencia to Rituxan than the other way.  I know the Orencia is doing some good, as I am feeling better  - not just the response I'd hoped for.      Sharon

My RD told me that they are really locked in on the Orencia dosage.  That and the time it is scheduled.  Basically, they want you in monthly-my office gives you a 3 day window to schedule.  That is one reason so many RD's like Remicade initally.  There is way more room to play with dosage and timing.

 

 

I was able to get approval from my doc, insurance and infusion company, to receive one dose of Orencia on a 3-week schedule because of a trip planned on my normal week.  However, that was definitely the exception, not the rule. I'm going for my 9th Orencia infusion tomorrow and I can't tell of any significant difference.  I still have the morning stiffness and the fatigue factor is still off the charts.  I was hoping that if nothing else, the fatigue aspect would be a little more manageable by now. 
Bingethinker....Sorry you are not having a better response.  If I remember right, I was told when I started this drug that you can still see improvement after being on Orencia a year or  more.  My energy level is also lower than what I'd like, but definitely better now that I have stopped Methotrexate as of mid-July.  Having 9th infusion and doctor appointment next Wednesday.All these very expensive drugs and even "we" don't know if we're any better or not. It's kinda crazy isn't it? Sometimes I wonder if the big guns even do anything. I haven't gotten much relief from anything, even narcotics. I hope you feel better soon and get what you need from your rheumy :)
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