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Posted 9/17/2007 11:38 PM (GMT 0)
Hi Folks-

Have any of you taken Orencia?  I am to start it in a few weeks and was wondeing how others have done on it.  Please advise.

Many thanks to all,

~Laurie  

Posted 9/18/2007 12:43 PM (GMT 0)
Hi Laurie,

I have not heard of this. I'd be curious as well to hear if others have tried it... please keep us updated when you do try it.

Take Care
Posted 9/18/2007 2:44 PM (GMT 0)

I had my first infusion last week (I need to change my meds in my sig).  It only took about 30-40 minutes, no pre-infusion meds such as tylenol or benadryl, and no reactions or side effects.  I was sleepy afterward but that could be a coincidence.  I go back next week for my next one.  The doses are 500mgs, 750mgs (I'm on this one.), & 1000mgs.  I can't say I feel any differently, but they said it generally takes 3 months to see the full benefit.

Good luck!

Posted 9/18/2007 5:18 PM (GMT 0)
Jeannie-

Thanks for the info.  I start it 10/26/07.  I am taking Humira until then.  I wish you much relief on the Orencia.  Are you still taking MTX?  How long did Remicade work for you?  I took it for quite a while (a little more than a year before it stopped working).  It seems a year to a year and a half on a treatment and then my body starts rejecting it.  I wonder if this is normal.  I only have 3 more days on the Prednisone and I am glad for that.  It has helped a bit - but I hate being so puffy and fluffy looking - and all of the side effects that come with it (fuzzy face and all).  I am anxious to experience the benefits of Orencia.  Please keep me posted.

My best to you,

~Laurie

P.S.  How is Lunesta working for you?  I was supposed to try that - but she only had samples of Rozerem and it seems to work well for me.  Thank goodness.  I had not slept well at all for over a year - and had not slept a single night for more than a few hours (literally) in almost a full year.  

Posted 9/18/2007 6:51 PM (GMT 0)
Yes, I'm still taking the MTX. I was on Remicade for over a year and worked really well for me. My Rheumy pulled me off mainly because my ANA was rising. It's come back down since I stopped taking it. I was also getting chronic UTIs(kidney infections and stones too) and swollen glands. So even though it was working, we decided to stop it to see exactly what was going on.....both problems stopped when Remicade was discontinued. It could be Remicade specifically or it could just be a result of biologics in general. Remicade was my first biologic, so we will see what happens on the Orencia.

I think that is common for the biologics to work for only so long. Arava/MTX should help extend the time, in theory anyway. I do know a lady that has been on Remicade for almost 10 years for RA and it still works for her. So there is hope that you might find something that works for the long haul.

I was on Prednisone for a year and I know exactly what you mean. I hated it and withdrawal was pure evil. I feel for you.

It works for the most part. I still will go through cycles (usually during a flare) of not being able to sleep, but it is much better than not taking anything. It took a while for my Rheumy to convince me to try it. I was probably at the point you were and finally agreed to try something. I would like to stop taking it, but I go right back to only sleeping a few hours and it's not even good sleep. I'm learning to accept it. :)

How did you end up with both the RA/Lupus diagnosis? I ask because my diagnosis isn't clear, but we are going with RA. I'm beginning to wonder if we aren't dealing with both. My ANA usually runs 1:160 (speckled), CRP & SED rate are high, Scl-70 positive (but no skin signs of scleroderma) and everything else is normal even the Rh factor and CCP.
Posted 10/14/2007 6:30 PM (GMT 0)
Hi Jeannie-

I am sorry it has taken me so long to get back on here.
I only take the Rozerem as needed - it helps me sleep. WEhich is something I don't normally do for more than a couple of hours at a time on a good night.

I begin the Orencia on the 26th. I am anxious to try it as since I last posted the pain has become increasingly worse.

As for my diagnosis - back in 2002 my original treatment was for SLE - but since then I am mainly being treated for RA - I have all the classic signs of SLE and she treats me for it as well - but says for insurance purposes (Life Ins., etc) it is best that we treat it but not offically label as SLE. My ANA has been (what I would consider to be) off the charts over the last five years 1:1260 & 1:1640. I am not 100% of the numbers now - but I know it was in the 1200 & 1600 range and for some reason 1260 & 1640 come to mind. Some of my early paperwork from my DR lists SLE & RA - and she gave me brochure on SLE as well info on a Lupus Support group in my area. I take that as pretty much the most official unofficial dx of SLE. I hope this helps you somewhat. At least you know you are not in this confusing dx boat alone. I would sometimes wonder if the SLE stuff is just all in my head and wonder if maybe I just have RA. Do you or have you ever felt like that too? So often I feel like a mess as well as a guinea pig - going from one med to another in hopes to find something to help.

I wish you the best and I sincerely thank you for your input.

God bless you Sweetie.

~Laurie
Posted 10/19/2007 5:48 PM (GMT 0)

I beging the Orencia a week from today.  I really hoping and praying for relief.  if anyone out there has any information about this or can tell me their experience - I would most appreciate it. 

Jeannie, how is it working for you?  I was told today by my nurse that the infusion will last about an hour or so.  How are you doing on it now?  Any results?  I am just so anxious.

Hugs to you,

~Laurie  

Posted 10/19/2007 7:51 PM (GMT 0)
Laurie . . . good luck with your infusion! I wonder if being well hydrated would be a benefit for such an infusion???? One week to go!! Sorry its taking so long to start it. I hope you'll keep us posted on how it goes. Blessings!
Posted 10/20/2007 2:34 AM (GMT 0)

Sorry, I must have missed this before.

I've had 3 infusions, the last one was on the 11th.  This week I *think* I'm starting to feel some improvement.  At least, I'm hoping that is what is going on!  I start going monthly now.

The first infusion was probably close to an hour, but since it has gone faster, more like 30 minutes....still no side effects.  The drowsiness like I had after the first infusion hasn't happened again so I think that was a result of stress/not sleeping well the night before.  I did get another UTI right after I posted about the first infusion, sigh.  One more UTI and I'm going to have to reconsider the antibiotic maintenance dose.  I haven't had another though so I'm hoping Orencia is going to be better than Remicade in that regard.

And yes, I totally know what you are talking about and feel that way most of the time.  I hate the mind games that come with all of this.

I would tell you not to be anxious, but we both know that isn't going to happen. tongue

Be sure and report back after your infusion!  I'll be thinking about you.

Posted 10/27/2007 1:09 AM (GMT 0)

I had my first Orencia infusion today.  I have been very tired ever since.  I am not sure if it has anything to do with the infusion or what.  I slept very well last night and even got to sleep in til 5:30 this morning and only worked 4 hours today.

Unfortunatley I feel no relief yet...which I knew I wouldn't - but I am really looking forward to when the relief comes.

I'll kee you all posted of the progress of Orencia.  If any more of you have tried it - I would still love to hear from you.  This does not seem to be very popular yet.

Hugs to all of you.

~Laurie 

Posted 10/27/2007 3:19 AM (GMT 0)
Thanks for the update Laurie . . . I hope you sleep well again tonight. What is Orencia supposed to do for you??? Is an immuno suppressant? Blessings!
Posted 11/2/2007 5:55 PM (GMT 0)
I have really been sleeping pretty well all week.  It is so nice.  I am going to Vegas tomorrow to meet up with a couple of my aunts and a couple of my cousins.  It is going to be a girl's weekend getaway.  I am really l looking forward to it.  It will just be nice to get away.  I get back next Tuesday and then have my next dose of Orencia.  I'll keep you posted how it works for me.  It seems no one on teh arthritis forum has even been on Orencia so far.  So there must not be many people taking it.  All the more reason I will keep you guys posted.      

Have a great weekend!!

Love,

~Laurie

Posted 11/18/2007 9:20 PM (GMT 0)

Rosie-

I just got back on here today and realized I did not answer your question about what is Orencia.  Orencia is suppose to relieve the pain and swelling of joints.  It is also suppose to help with fatigue of RA and control the advance of joint dammage.  I have only had 2 infusions so far and I have not had an ounce of relief YET.  I was told though that I would not feel relief until I have had at least a few infusions.  I am having my third infusion this Wednesday so I am hopeful this is the one I will feel the relief.  I have noticed though I seem to have been a bit tired for a couple of days following the infusions.  I am not really sure if it has anything to do with the Orencia infusions though.  I do know that my doctor told me that it is going to get worse before it gets any better.  Boy oh boy - she was right on the money with that.  Also, it lowers your immune system considerably.  This scares me as we are approaching - or are even in - cold and flu season.  I have to be EXTRA careful when around anyone sick at all.  I have noticed that my allergies have also been a LOT worse.  I will let you guys know how things go with the Orencia since there does not seem to be many people on it yet.

Many blessings and painfree days to all.  Also, I hope everyone has a happy Thanksgiving this week.    :-)

~Laurie

 

Posted 11/20/2007 12:39 AM (GMT 0)
I hear you Laurie.  I started in Sept. and so far I've had 2 UTIs and 1 upper respiratory infection.  I'm hoping as I get used to it the frequent infections will go away.  I had my 4th infusion today.  I think there is a slight improvement with joint pain, but the swelling and stiffness (and fatigue) is still hanging around.  Keep updating so we can compare notes. :-)
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