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enbrel not working, anyone tried orencia?

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Posted 5/19/2012 12:16 AM (GMT 0)
Hello,

I have had rheumatoid arthritis for over a year, and am currently taking 20mg of injectable methotrexate, and 50mg enbrel both taken weekly. The enbrel is definitely not working, and my pain level is only getting worse. My dr. suggests orencia or humira. I am interested in orencia because it is an infusion, and I do not have to deal with the hassle of injections, keeping it cold, etc. I was wondering what others have to say about the drug and how long it took before it started to work. Does it work on taking the swelling out of the hands? Also, how long do I need to wait from being on enbrel until I can start another TNF blocker? I will be calling my dr. Monday, but not sure if I should take the enbrel on Sunday...

Another thing I've been wondering about: can painful muscles be a part of RA? My legs have been so very sore with a gnawing, burning pain and 600mg. motrin is not touching it. I have trouble with my knees, and sometimes they hurt too along with the burning pain, and sometimes not. Is this all the part of the "fun" of RA? :)

Thanks so much in advance for your replies.
Posted 5/21/2012 1:34 AM (GMT 0)
 

Hi There!

I'm surprised that you are trying biologics before the other numerous RA medications.

I was on Orencia infusions for 1.5 years but unfortunately it didn't work for me.  Very few drugs have worked for me through the years.  My Rheumy said that I'm in the minority where these drugs just do not work satisfactorily.  I sure hope that you have better luck. 

All I can say is that you have to try any RA drug yourself to see if they work for you.  Oh...Orencia made me snappy and on edge.  I lost weight which I didn't want since my inflamation rate went up.  But none of this may happen to you.

  

Yes, pain and stiffness in muscles, joints, tendons and ligaments are a part of the RA fun.  Strange that you and some others describe the pain as burning.  My Sis said the same with her feet.  I describe it as having duct tape pulling tightly on my muscles and ligaments.

My shoulders I could describe sometimes(aside from the stabbing or kniofe left in pain during movement like all my joints) as knawing or yukky, achy.

Posted 5/21/2012 2:26 AM (GMT 0)
Hi I was on orencia for about a year. It is very slow to build up in your system, it took me 5 months before I noticed any difference. It is quite a different type of biological, works on another part of our immune system. I had no break between biologicals straight from one to another to another. (Was on remicade but couldn't handle the mouse protein) Anyway I enjoyed having the infusions, I enjoyed the comraderie of the infusion room at the hospital, always someone interesting to talk to. The nurse was really informative and I got a lot more back up support from the hospital during my time on it. But it never worked as well for me as humira had done, so I asked to go back on humira.

As Ms Ouchie says it really depends on your reaction to it. All our immune systems are in overdrive but maybe the different meds target the overdrive bit in me that humira attacks. You'll just have to keep trying and seeing which one works for you.

There were 3 of us that started orencia at the same time, one found it excellent within 2 months but 2 of us took 5 months before we noticed any effect. But then she was really happy with the relief it gave her whereas I felt it wasn't as good as humira.

Hope this helps, I often get aching legs when I'm tired. Heat helps, use heat packs wrapped around the knees, great relief.

Best wishes, golitho

Posted 5/21/2012 12:18 PM (GMT 0)
Have you tried Methotrexate and Plaquenil? and all of the more potent NSAIDS? I've had RA since 06 and I had to run through all of the NSAIDS, Mobib etc, then Plaquenil which is fantastic, plus Methotrexate which I am still on before my rheumy considered bio's. I'm currently on Enbrel and the MTX and this will be my second month back on Enbrel and I have had a couple of weeks that were really great and a couple of weeks that I felt the same as before I went back on the injections.  It can take up to three full months to see an improvement and like the other poster said yes the other pain is part of RA and I just started getting that deep down ache, more in my shoulders, and a couple of times have had it in my legs so bad that even my script for Vicodin wouldn't touch it. RA can be flat out miserable, I'm so so sorry to hear you have it as well.
Posted 5/22/2012 1:53 AM (GMT 0)
Thank you for your replies. It is very nice to have an active forum like this to bounce things off from another who have had more experience. I think I am thankful to hear that the gnawing muscle pain is a part of RA. I was starting to worry if it was allergic reaction to the enbrel. It must have been why my doctor didn't bat an eye when I mentioned it to him at the last visit.
To fill in a little more of my story: I have had Crohns' for 10 years, and was on Remicaid for 2 years until 2011. My body started to build antibodies to the drug and manifested by horrific joint pain. I stopped Remicaid, started methotrexate, celebrex, and the horrid prednisone. Celebrex was another allergic reaction (sulfa) and after 4-5 months of not getting anywhere I started enbrel. Enbrel worked, and another long story, we stopped it shortly before Christmas. As I'm sure you guessed, RA is back and here to stay. One of the reasons we stopped enbrel and mtx was our of the theory of this being a result of Remicaid antibodies. I don't want to be on drugs I don't have to be on! Anyhow, the 2nd time on enbrel is not taking as much of an effect as the first time, and I've given it 5 months.

Ms Ouchie--What kind of other RA meds are out there that are not biologics?

gilotho: five months before it can work??? I didn't want to hear that (although my dr did mention it) I was hoping for the "I felt great in a week" story. :) I am a professional pianist and church organist, so RA is NOT in the schedule! Are you feeling the humira working as well as you remember the first go around? It is the one med my dr really wants me on, but I think it would be wise to 'save' it for when I need a stronger drug for Crohns. From what I can tell, there are only two biologics on the market now approved for Crohns and many more for RA.

momto3: Hi again, I hope that enbrel is working better for you than it did for me on the 2nd try. Is plaquenil a sulfa-based drug? I was thinking I read that somewhere. Because of the Crohns, I'm technically not supposed to be taking any NASIDS...but there are days I cannot function without 600-800 mg motrin--more than what I'd like to admit! Of course my line of work I don't think helps any. I've tried vicodin and salsulate, but that make the Crohn's symptoms I do deal with worse. If it is not one thing, it's another!

Thanks again to everyone for your input with past experiences. The thing I am learning is patience: it sure takes a long time for all these drugs to start working--if they decide to work for you!
Posted 5/22/2012 7:08 AM (GMT 0)
 

Hi :-) ....

Well, instead of listing all the RA medications, here are the Biologics instead:

  • Actemra
  • Cimzia
  • Enbrel
  • Humira
  • Kineret
  • Orencia
  • Remicade
  • Rituxan
  • Simponi
  • I think I missed one.

There are more Biologics being studied, so they are not named yet.

 

I have had rheumatoid arthritis for over a year,

How long is over a year?  Are you combining the medications for RA and Crohns?  You've been on quite a few so far.

 

You are on Methotrexate and have already tried and know about some of the non biologic drugs(NSAIDS and DMARDS).

My Sis has been on quite a few drugs and presently on MTX and Enbrel plus her nsaid also for about a year and is still in noticable pain.  She was dxd. about 10 yrs. ago.  We'd like to be off all drugs but there you go.  No choice. :-)

Thanks Golitho for the correction.

Posted 5/22/2012 11:22 PM (GMT 0)
Hi there, no Plaquenil is an anti-malarial, not a sulfa.
Posted 5/23/2012 2:23 AM (GMT 0)
Hi ms ouchie,
Over a year would be 17 months. I started showing signs towards the end of remicaid infusions beginning in Jan 2011. At first the dr thought I over did something on the organ ( I used to practice 3-5 hours a day). When it came back 5-6 wks later much, much worse, we were referred to a rheumatologist with 'migrating arthritis' and 'antibody buildup' title.
As for combining meds for crohns and RA, we are using the mtx. The crohn's is not showing signs of inflammation, so there is no need to be on a biologic drug for that. It is also a reason I'd like to stay away from cimiza and humira. Save those for when I need the 'double whammy'. :). Remicaid infusions were easy- I didnt have to poke myself (aka: find the nurses at church) meanwhile keeping the drug cold for several hours. Traveling with enbrel is tough too. I learned how to do the the mtx, but the enbrel stings! I'm hoping orencia is easier to deal with like remicaid, but it has got to work--my job is on the line! :)
Posted 5/24/2012 4:54 AM (GMT 0)
 

Okay, I understand now about your taking the medications for your Crohns which has existed much longer that the RA.  Great that you are not experiencing inflammation with the Crohns.  I've only taken MTX in pill form. 

Ya, when I actually went to a Dr. about these weird pains(RA) that I was having, he said it was probably caused from all the biking I had doing that week-end.  NOT! 

Yes certainly the Orencia is easier.  The Nurse came over with all her stuff and just plugged me in for about an hour once a month and kept testing my BP and Temp.  I enjoyed her visits.

Unfortunately Orencia didn't work well for me and I was surprised that it had raised my inflammation rate.  I was also surprised that the pain didn't leave when my inflammation rate dropped to 1 after getting off Orencia and going onto the next biologic.  Shucks!   I truly hope and pray that it helps you.  Fingers crossed too. :-)

Thankfully, I just had my infusion done this week and my lab work also done for my Endo visit later this week.  Talk about a rushed day. eyes

Posted 5/24/2012 6:40 AM (GMT 0)
The humira is working quite well, my condition has deteriorated since I was first on it so it is difficult to answer whether its working the same, but I think it is. It works better for me than remicade or orencia anyway.

Certainly my hands are quite good now, which you'rd be pleased to hear, the swelling in my knuckles has really gone down, wrists still at me a bit and my feet. But my knees are really good and I can work on my feet now without having to swallow huge amounts of pain killers.

Hope that gives you some hope, faster to work too, only 2 months.

Give it a go, thats my advice, golitho

Posted 5/24/2012 6:43 PM (GMT 0)
I am a new member and have been on Orencia infusions since 2009. They started working within the first month.and by the second month i was feeling great. I have continued to feel good ever since. I also take mtx weekly.

I would like to know if anyone has ever skipped a month and if so what the reactions were?
Posted 6/25/2012 11:13 PM (GMT 0)
Remicade is given usually every 8 weeks (some do every 4)

I've done remicade (and also starting getting RA toward the end before stopping been suffering ever since) I did humira alone. The humira and MTX. MTX was doing great until i stopped to try and have a baby... RA got so bad I gave up on the baby front and went back on MTX but been suffering majorly. My doctor has suggested another BI med (he suggest Kineret) but I travel a lot and I don't see myself handling injection daily. I was looking into Orenica I like it has nothing in comman with Humira OR remicade... I like the infusion part... beats injection yourself daily but I'm wondering.. I don't exactly have RA I have enteropathic arthritis which is caused by the crohn's. WOnder if this med is still effective for that or just RA..?

Also has anyone done Orencia without MTX? or tried just the injection but didn't work so went back to both?

Posted 2/20/2013 10:16 PM (GMT 0)
after trying everything else, pred, sulpha, metho, etc etc, i'm currently on weekly orencia injections and plaquenil tablets. dr. says orencia has done all it's going to do and wants to put me on rituxan...ewww, scared to do that. i got sick on everything else. the current meds make me dizzy, and my legs and feet burn too. there are alot of meds i can't take because of stage 4 nh lymphoma. plaquenil has damaged my eyes.
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