Sunday, July 04, 2010 Debbie, Community Member, asks

Q: How long does Orencia take to start working?

I finished my third Orencia infusion 2 weeks ago and will have the 4th infusion on 7/16.I still have constant pain and am even taking pain pills (Arthrotec).  Rheumy doc says if 4th infusion doesn't help, we'll try something else.  Why hasn't Orencia done anything?  I am so depressed about having RA (had since 11/2008) and now I also have Sjogren's Syndrome and psoratic arthritis!  What is happening to my body?

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Answers (6)
ronie, Community Member
7/ 5/10 1:08am

Hey Debbie!  Sorry to hear you are miserable. I can't give you answers about the Orencia.  Basically, your rheumie already has.  You should have already seen some type of results.  The fact that he is trying and willing to switch meds is a good thing.  We sometimes suffer a lot longer before a rheumie will act.  So it sounds like you're in good hand.  But not to worry, there are plenty of bio meds on the market nowadays and your doc seems to be looking hard to find one that works.  When your rheumie finds the right meds for you, a lot of the pain will subside.

 

RA, PA and Sjogren's are all in the same family of autoimmune disorders where our immune system basically finds collagen an enemy and attacks.  You were diagnosed 2 years ago.  What exact questions do you have about what is happening to your body.  We can help to explain things if you were being serious.  Or was it just a cry out because you are extremely frustrated. I can understand that too.  I am pretty much there myself.  Over the last 25 years, I have been there and back sooooo many times.

 

We all understand the depression.  We live with it and through it.  Talk to us a little more and we can help a little more. 

 

Looking forward to hearing more from you,

Ronie

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Debbie, Community Member
7/ 5/10 12:04pm

Hi Ronie!  Thanks for your quick response!  Just to let you know, we've been trying several meds over the past couple of years -- prior to the Orencia I tried Humira, but it wasn't helping and in fact, after that, I developed the PA and Sjogren's.  She decided we should try Orencia.  After the decision to try Orencia, I changed rheumy docs since the one I was seeing was in downtown Denver and it was taking me over an hour to get to her office and an hour to return -- my employer was giving me grief about taking time from work even though I ALWAYS made up my missed time.  I found a rheumy doc that's in Littleton which is closer to me.  I have much, much respect for the first rheumy doc and the new rheumy doc is great too!  The second rheumy doc diagnosed me with PA and Sjogren's in addition to RA.  Both rheumy docs said that if Orencia doesn't work after the 4th treatment, we'll look for something else.

 

Questions I have - why am I so tired all of the time; why I can't sleep at night; constant pain; depression; am I going to have this the rest of my life; was a runner, no longer can run, then started walking, but can no longer walk distances; have tried walking in swimming pool, but later that day I'm extremely sore; why don't pain killers help.  You're right -- I'm really frustrated because I have been healthy all of my life until a couple of years ago.  I'm wondering what else I have to look forward to getting -- my gums bleed when I brush my teeth and I was told by a friend at church yesterday that her mother (79 and has had RA since she was 30) has had a cornea transplant because the RA has attacked her corneas and she asked me if I was aware that RA can attack my corneas.  I'm sorry for complaining because I know there are many, many people in worse shape than me.  I just hurt constantly and my left knee and left elbow are always swollen and burning up with heat!  I'm sorry that you've had this disease for 25 years!

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ronie, Community Member
7/ 5/10 2:29pm

No problem on the quick response.  Nowadays, responding to this and a couple other websites is about all I am quick at.  But hell, I actually caught something that fell off the table the other day.  Haven' done that in years, it must have been a good day. 

 

Well, Miss Debbie, I will let you know first off that I am very jovial.  I have to be right now.  Twenty five years of this so far and I am only 41 has taken it's toll on me so many more times than I wish to count.  But I believe whatever spirit out there keeps waking me up every morning so I am here for a reason.  I just don't know what it is and why my reason has to be so painful.  Besides, there are other RA'ers and people with worse off diseases.  I don't complain, because I am alive!!  Sometimes, I cry.  But mostly I just muddle along.  I am me and that is all I can hope to be!!

 

You seem to trust this rheumie for the time being.  That is always a good thing.  We have to have good communication with our docs about our condition otherwise they won't know what is working and what is not. 

 

You did not mention prednisone or methotrexate, in your list of meds or any kind of anti-inflammatory.  They too can help with the pain and swelling if adjusted properly.  Which is what phase you are in.  Our meds are all trail and error.  When we find something that works, we stick with it ass long as we can until the meds fade off.  Then we move on to the next. And you can ask for an antidepressant should you feel you need it.

 

I am going to assume within the past couple years, you have done some research about RA. So I will only cover the basics, a few tidbits that a lot of newbies like to oversee or bypass in the beginning because they are scarey facts.

RA is not cureable as of yet.  We don't know what causes it, but it is plain that is can tend to be genetic (I am 3rd generation) and can be passed more easily from female to female (a basic fact is that more women get it than men, dunno why)

RA does not limit itself to our joints.  The wayward antibodies in our system actually sees collagen as a foreign substance and attacks it.  (It does love Synovial Fluid though (the lubricant in our joint).  Our entire body is made up of collogen.  So basically, there is nothing RA cannot and will not attack.  Do a little research on the web.  There are some specifics that we have to watch out for.  Nodules in our lungs or on our livers or pancreas.  RA of the C1 of our spine.  Preparing and educating yourself is completel necessary when you have RA.  Do not leave yourself unprotected and unprepared!!

 

Why are you tired?  Right now your RA is not under control (and that is all we can hope for) and inside you body is fighting a relentless disease.  Pain and depression makes us extremely tired along with lack of sleep from the pain and depression. It is a big cycle. 

Pain Killers do sometimes work when our emotions are not in turmoil.  Emotions and Pain run hand in hand like a very powerful set of Siamese Twins!!  And I always advice people of the "hangover" effect as our bodies can become dependent on the narcotic.  When the meds wear off the pain is often worse because our body is now craving also.  Our minds don't always distinguish the difference.  The hangover effect feels like you whole body is in pain (and indeed it is, not always from RA). 

When your rheumie gets your meds adjusted properly, you may see that you do not need the pain meds everyday but only on occassion.  Our RA can also go into "remission" a few times.   That by no definition means it has gone away.  It will eventually be back for a visit.

 

In the first few years of diagnoses, we also go through a grieving process.  There are 7 steps in the grieving process just as if someone had passed away.  In actually, you will subconsciously grieve the passing of your former more active self. We actually go through this process several times throughout our lives with RA. (we sometimes get stuck in the cycle of the first 4 for a while)

#1 Shock and Denial - Completely dumbfounded we have been dx with RA.

 

#2 Pain and Guilt -  Feeling of being out of control and that live is in chaos. (it is just a feeling)

 

#3 Anger and Bargaining - Throwing temper tantrums because we can no longer open the mayo or run, and play sports, or pick up our kids.

 

#4 Depression and Loneliness - "Why me?"  "No one understands the pain I am in."

 

#5 Upward Turn - We have adjusted a bit and learning to do things differently

 

#6 Reconstruction - Meds are working and we are not so depressed.  We see inprovement in quality of life

 

#7 Acceptance and hope - We have reached an understanding of our limitations and are moving forward again. 

 

I can understand that you are depressed and frustrated that you cannot run like you used to. I too have always been athletic and active.  Now the extent of my activity is watching my friend play softball!!  But it sounds like you are in the process of learning your limitations.  You are learning exactly what you can and cannot do anymore, and that is okay.  That too is trial and error.  We have all exhausted ourselves just going to the grocery store (Girl, we have some stories about that let me tell ya).  We have all learned that we can no longer be our families' Rock of Gabralter.  We have to actually ask for help and depend on others sometimes.  That too is ok. 

 

This post is getting long, so I will stop here. 

I am sure there are so many other questions and we have the answers (even if it is just referring you to the web or your doc).

 

Welcome, Miss Debbie, to our family of RA'ers.  Secure all loose items, Keep your arms and hands inside the car at all times, and enjoy day your day here at Rheumatoid Arthritis for Life, the Old Timers!!!!

 

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sherry, Community Member
4/30/11 12:31pm

Your reply to Roni also helped me. I am 45 years old and just diagnosed with RA, after months of severe pain and stiffness.

Right now I'm on a low dose of prednisone due to my tolerating it very well at higher doses and I am also taking plaquenil.

The pain and stiffness are improving some. I don't take pain meds unless I just have to because I feel that I HAVE to feel some of the pain in order to not push my joints too hard.

I'm a nurse and know about RA but there are just somethings you don't learn until you are the one under the attack.

Right now I'm in the feeling sorry for myself stage. My office manager has very little compassion and is pushing me even harder and asking me to do things that she knows really stresses me and are harder for me to do since she found out.

Thanks for the info- Sherry

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sgackle, Community Member
12/ 7/13 5:06pm

I am getting depressed just reading all of this!  I went in 2 years ago for bunion surgery and it activated my RA.  I tried Humira, kicking and screaming but it worked up until now.  So they wanted to do Orencia in an infusion form but I work full time and couldn't afford to take off work.  So, I am trying the injection.  I have been on it for two weeks and I am worse off than when I started.  I am just depressed!!  I was a runner and can still run but for how long?  I can't imagine having it for so long!  I am just so frustrated and worried that this will just get worse every day and that no meds will ever work Cry

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DebbieM123, Community Member
7/ 5/10 10:54am

I'm not sure if you have insurance, or what type you have, but if you haven't already, look in your area to see if there are psychologists/counselors that deal with chronic pain. My doctor told my mother who also has Ra that it was a good idea, since this would be my life-long companion and hers, that we have a 'circle' of people for support, which obviously included my Rheumatologist. I see a psychiatrist too, so does my mother.

I think, for me, it helps me when I go to the Rheumatologist and I am looking to just have more questions answered about my progression and the meds.

I don't have to think about why this pain is making me depresessed, and what can my Rheumie do for that, because most times they can't do a thing.

What my psychologist and psychiatrist do is keep in contact with each other and the Rheumatologist and my GP so they all get the bigger picture of how I am feeling on all levels.

My Rheumie knows I'm depressed with this many times. But it's not his specialty as you'll find with almost any doctor you see. Say you go and see a doctor for your kidneys for instance, that's all you'll be treated for. They don't care what else is going on with you. They treat you for what you come to see them for.

I find the psychologist to be helpful to vent to, and then she tries to help with techniques to help my mind relax which really does help the pain. The psychiatrist is obviously skilled in meds for depression, anxiety and so forth. It doesn't mean you have to be on those types of meds for the rest of your life, [the meds for depression] but it might be a good "aid" [I often refer to the meds for my depression as swimming floaties for kids]. It helps when you need it the most, and then over time, the dosage is lessened when you learn how to cope with this disease.

Have you tried any alternative types of medicine in conjunction? I am not talking just supplement wise, but acupuncture or chiropractic? Many times in conjunction with a right combination of meds that your Rheumatologist will eventually find for you, these will work wonders as well.

Finally, no one know why we get this. Genetics, chemicals in the air, allergins, bacterial, viral. Takes one thing many a time to trigger all these exposures to our bodies off. Stress.

If you have a Rheumatologist that will take the time to find out what might be causing it, you'd be in great hands. Most, under time constraints don't have the time to test everything they would need to figure these Autoimmune diseases out which is sad. I was reading an article at my doctor's office last month that said I think back 25-30 years ago there was about 50 Autoimmune diseases that doctors knew of. They are estimating that by the end of 2010 there will be now over 200. It obviously has to have something to do with the lifestyles we are born into today than then. But that information alone is scary because it's harder for the doctors to pinpoint what ones we can get.

Keep us updated on what your Rheumatologist will be doing. I hope he finds something that eases your pain.

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ronie, Community Member
7/ 5/10 2:38pm

Good Job on bringing up the psychologist aspect, Debbie.  I tend to forget this (too many psychology classes in college I guess, that I overlook it all together). 

 

I have actually been told by a couple rheumies in my history, that I cannot always just laugh it off.  The thoughts that plague my mind have to go somewhere and they usually go straight to my ulcer and aggrevate the pain in my joints.  I have any had one tell me, that but shrugging off my pain, that I could not communicate to him properly whether the adjustments to my meds were working. 

But like you said about finding an alternative to meds, Laughter is my alternative.  I enjoy the endorphines!!  They are my painkillers. 

 

We are all different in more ways than one

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DebbieM123, Community Member
7/ 5/10 3:48pm

haha Ronie. Believe you me when they said you probably want to see a psychologist and a psychiatrist while you are at it, I was thinking back then, they all think I have lost it don't they? But I have come to realize in the many years I have seen them, that they all help in different ways.

I agree with you. Laughter is great. If I can go out on a good day and watch a funny movie with friends I will. I find oddly that my pain is lessened alot when I am engulfed in a good movie and laughing. I think it proves how powerful our minds play in this disease. I'm not at all saying that you can will things away like some people might hear on tv. 'oh I willed my cancer away just by my mind'.

But I do think that our brains and the CNS are the key to helping us "cope". They are why we feel pain. Signals go off and tell us something is wrong. In the case of Fibromyalgia the signals are short circuiting. But I think once this Debbie gets on the right sort of combination of dmards and biologics and even the NSAIDs she'll be more apt to feel at peace with what's going on.

I remember one time at the ER when the pain was so bad and I was just recently diagnosed, I said, I dont want this disease [denial]. And a nurse there said, honey you better try to calm that mind and body down of yours, because you need a clear head to deal with that disease. And you do, as you have seen yourself for having this mostly your whole life Ronie. If you didn't have a strong willed mind and spirit like you have, this would have probably ruined you mentally a long time ago. Keep fighting the good fight Ronie.

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ronie, Community Member
7/ 5/10 9:26pm

You mean we can will it away with our minds??!!??  hahahaha.  Thanx for that laugh!!  I am Asian.  I know the whole mind over matter and mediation and metaphysical, blah blah blah.  If I could will this away, my mother would have taught me how to do it. 

 

Met a woman today who is 37 and was dx with RA at 4.  I almost feel out.  She has had just about everything replaced already.  She is still working at parttime job and going to school.  She told me about what it is going to be like to have my hip and knees replaced.  I almost fell out.  She walks upright without a cane or wheelchair and has no deformities.  You would never know this woman suffers.  She said her best friend is laughter.  I wanted to be like her.  I wanted to be "normal looking." 

I always looked up to people like my mother who suffered in silence and kept on and on.  I caught myself envying this woman as i compared my twisted hands to her perfectly normal hands!!! 

I will probably never again look normal because of my deformities but she showed me that with the miracles of modern meds and technology, I will be able to live a normal life once I make my adjustments again, then again in a few years then yet again. 

 

Adapt and overcome!!  I have some Diem to Carpe!!

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DebbieM123, Community Member
7/ 6/10 12:37pm

Pfft I wish! haha I was just watching this 20/20 thing or dateline special last week that said people "will away their cancers and diseases", and I was thinking, yah ok tell me another story. They shot a disclaimer at the end though, that these people who couldn't walk due to an injury of their spine but then were healed via their mind, actually had "surgery" to help them. The surgery wasn't brought up on this special until the very end. The people with cancer had some chemo. I think only one man said he had a cancerous mass and then within a few months they looked again and it was gone.

 

I'm not knocking people that believe in that. However, soley believing in that just to me, looks detrimental for someone's health. 

 

Whoever the lady was that you met that has had almost everything replaced must have had a wonderful doctor as well! Pro-active on all levels!

 

I know when I was first diagnosed, the GP said "hey you are lucky Debbie, years ago, you wouldn't be able to live as normally as I know you will today."

I felt like saying you don't have it, so don't preach to me on what is normal. But as I get older and have learned to cope and accept it, I have realized what he meant was that there are drugs out there now that will slow the progression and I can live a life like everyone else out there. Probably not pain free all the time but hopefully still functional. Sometimes these new meds even put you into a remission they say. So, I have learned that Ra doesn't have to be a living death sentence as I assumed it was when I was younger when looking at my mom who has Ra as well. 

This woman sounds like a true inspiration. I hope that you can get those surgeries that are right for you, and tell Ra to go you know what. haha! With your attitude, you will overcome anything.

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Debbie, Community Member
7/10/10 10:17pm

Had a hell of a week and thank God that it's over!  As stated in previous posts, I'm in constant pain and the swelling (as well as the hot, hot temp in both) in left knee and left elbow hasn't let up!  My palms and bottoms of my feet have also broke out in puss-like sores and the skin is scaley!  Ugh!  I fell down at work on Thursday morning after passing through revolving glass doors and was told to turn fall into HR.  Left a skid mark on the floor.  Turned fall incident into HR and then yesterday (Friday), got called in to my direct supervisor's office and reprimanded because she "had to hear about the fall from HR" and she says I should have come into to her and told her.  I explained that I was embarrassed and didn't know that it was "protocol" to let her know!  Also was asked by her "can you handle your job because of your condition?"  I was appalled because I have called in sick 1 day since January 1 and that was in early February because I ended up getting strep throat!  There's a woman in our dept. who last year called in sick 30 days and this year already has called in sick 15 days!  Very depressed and sad about this! 

 

Also, talked with my rheumy doc late Friday afternoon and she wants to switch me to Enbrel.  I'm a little hesitant since I had such a horrible reaction to Humira and she says this is in the Humira family!  

 

Do any of you have any experience with Enbrel?  I just want some relief from the constant pain!  Also, I do take Methotrexate once a week (six little tablets).  

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Patty, Community Member
7/ 8/10 10:15am

Hi Debbie, I don't want to discourage you but I had seven orencia infusions and it did nothing for me. this was so frustrating because it took so long to find out that it didn't work. My Rheumy has switched me to Rituxin. I have my first infusion this coming Tuesday. God, I hope it works. i started out with Humira then Simponi which really made me fell worse then over then to Orencia. I'm not looking forward to a six hour infusion but if it makes me feel better, I will sit there all day. good luck. hope you feel better.

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Kahmaro, Community Member
7/ 8/10 11:33am

What ever you do, DON'T get discouraged!

I think 4 infusions seems a bit long. My Orencia worked right away. I assume you are also taking some Methotrexate along with that?

 

Apparently Orencia doesn't work for you, plain and simple. Some of them don't and everyone is different. Humira didn't work for me because I got a terrible site reaction, then Embrel just didn't make me feel any better, the on to Remicade which worked for 11 months until I flared, two times in succession.  Now I have been on Orencia for 3 years next month and I'm like a 'real' person again. If you are having flares or are in constant pain there's something wrong.

 

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Peggy, Community Member
7/19/10 12:29pm

I'm 50 years old, and was diagnosed with RA 2 years ago.  I took Plaquenil for the first year, Humira the 2nd year, and the Humira didn't work, so tomorrow I begin my first IV of Orencia.  I'm praying for good results.  My symptoms are mostly in my hands (stiffness and aches) and right foot, but every once in awhile I feel like my whole body is fevered, and I go to bed and usually awaken feeling much better the next morning.  I lived several months in total denial of this diagnosis before my doctor convinced me that I mustn't be passive about this very aggressive disease.  So, I accepted the reality, and began taking the meds.  I try to keep a very positive attitude, I have a strong faith in God and a family that supports me.  But, I do feel it's helpful sometime to talk to others who have the disease because they can really relate.  Thanks for listening.  

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sgackle, Community Member
12/ 7/13 4:59pm

I feel your pain.  I was on Humira and it finally stopped working.  Now I went on Orencia and have been on it for two weeks.  It's worse than the Humira!  I am drpressed too :(

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sgackle, Community Member
12/ 7/13 5:00pm

I have been on Humira for two years.  It stopped working.  I am now taking Orencia and it is working worse than the Humira.  I feel your pain.  I am not sure what to do....I am deressed as well!

 

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By Debbie, Community Member— Last Modified: 12/07/13, First Published: 07/04/10