Orencia side effects

Thanks Cindy!  I went to my Rheumatologist and discussed the chills and by tracing back the dates to when I started taking it (this past August) vs. when I started getting the chills (January) we determined it was a withdrawl symptom from going off my antidepressant Effexor XR and nothing at all to do with the Orencia, though that is one of the side effects of Orencia that could happen.  Going off the antidepressant has been a very difficult ride, though I did the withdrawl over a three month period of time.  I now have been off them totally for a few weeks and that symptom seems to be less frequent now.  I was an emotional wreck for awhile too as all the emotions I had been "numb" to came flooding back full force.  I could cry at the drop of a hat, was very tired, chills, and more,....but as time goes by I have now gotten my emotions under control, fewer periods of chills or abnormal body temperature, and I've even started a new job, so things are getting better.  I have a lot more energy with Orencia than I did with Remicaide, but found Remicaide to be an awesome product,....I find Orencia is just a little bit better regarding not needing an afternoon nap any more!   Hang in there!  I "feel" ya,....thanks for the chat!   Cre8tionist

Yes, I definitely have severe headaches ever since I started on Orencia. But, it has made my RA pain disappear, so i guess I have to just bear the headaches.

I've been on Orencia now for over a yar and a half.  The headaches have stopped and so has the problem with being abnormally cold.  My rheumatologist and I worked it out after the time I posted my first message about being cold and discovered that I had been on Orencia longer than I had realized,.....more than 6 months at time of posting (how time flies when your having fun!.....)  Anyway, I had been on anti depression medicine and when I decided to go off I did follow a very slow withdrawl process as my GP had told me to to do.  It seems it was the withdrawl from the antidepressants that was giving me the nasty side effects (i.e. headache and chills).....it took me over 6 months to go off the antidepressants.  In may of last year I started a job as a sales person in a family owned plant nursery and with the help of my rheumatologist, Orencia and my other meds I am doing really well.  I don't need naps any more,  my pain is very minimal,....and best of all no headaches.  Because I went off the antidepressants and in combination with an active job that I love I have been able to loose 20 lbs since May and I am planning on another 20 this summer.   Hang in there,.....maybe the headaches will diminish with time.  A full life is possible if you get on the right meds,...hopefully one that does not cause headaches,......best wishes!  Sincerely, Cre8tionist.......

I have received two infusions of Orencia.  I have been on everything else.  After the first infusions I had a headache but I took tylenol and it helped;two weeks later i had my second infusion; i had a slight headache the next day but on the next day after that i got a huge headache (like a migraine I guess); I had to turn out all lights; i was nauseated; tired; achey joints; i was bed ridden for 4 days; it was miserable.  I am considering talking to my doc about going off this;it was too debilitating for me and I'm scarred to try it again.  Any suggestions?  I have had RA for 23 years.

My headaches have abated.  I have been on Orencia somewhere around a year and a half to two years,.....I'm not sure if it was the meds that caused the headache or if it was dehydration or too much sun,.....etc.  I am doing really well on Orencia and before Orencia I did well on Remicaide,....the reason I wanted to try Orencia is that I needed to go back to work and could not afford to take a day off each month to get a 4 hour infusion of Remicaide.  The Orencia only takes an hour.  I can do that over my lunch hour and maybe only be 1/2 hour late for work once a month instead.  I do see a difference between the two in that I have much more energy with Orencia,....I don't desire an afternoon nap and can even make dinner after coming home from working 8 hours at a plant nursery,....a very physical job.   I used to have migraines that coincided with my monthly cycle and my sister still suffers from them,....they are debilitating and I feel for you.  If you have never had them before I'm sure it is very alarming and often there is nothing to do but lay down and close the curtains and turn off the lights.  I'm sure your health care professional would want to know about this nasty turn of events.  I only had a few of the headaches when I first started Orencia and now not at all.  The Orencia helps a lot so I would hate to give it up.  Though the Orencia seems to be the likely suspect in your case I would try to keep a sort of log or record regarding what you ate around the days of the migraines as it could have been triggered by something else like chocolate, eggs, yeast (bread), etc. or by too much sun, being over heated, etc.  I do think in my case the Orencia was the most likely suspect but I couldn't rule out a couple of other likely causes either.  There are some meications for migraine that do work if you take them when you first notice the migraine symptomes starting (some people experience narrowing of vision or seeing spots, etc.).....I don't know if you can take the migraine meds while on your other RA meds though,......be sure to tell your Doctor of what you have experienced.....hang in there,....it is possible to get something that resembles a normal life back with the right medications and positive attitude.  Be patient with yourself, know you can't do everything you used to,.....I've learned to sort my priorities much better and let go of the little stuff......best wishes for a good recovery,....(joining an adult swimming club helped me get my energy and stamina back and helps me stay more toned)......

Hello, thank you for replying.  It will be a week on Tuesday that I received my second dose or Orencia.  I was also on Remicade and I too got some results in the beginning but it finally didn't seem to last as long as it should so I chose Enbrel.  Well, that set me back so we decided to have me try the Orencia.  I am much better now but I had a terrible weekend and I would like to stay on this med but I'm fearful of getting those symptoms back again.  I was horrible!!  I am going to talk to my doc and hopefully he can come up with some pre meds or something to help; my husband of course does not want me to start it again because I was so ill.  I will have to wait and see what the gameplan will be.  I have to say after only two infusions my energy level is better; it is a long road with this disease but when I look back at where I was physically when I first got the disease and now, I am much better.  I have come to grips with the disease but I am only 54 and enjoy life and my precious grandchildren so I am going to persevere and get the most out of things.  I too hated the time involved in the Remicade infusions.  I work full time and it was a pain to fit it in.  So, I will continue my journey and see what the doc recommends as far as further treatment.  Maybe in time it will get better.  Thanks again for responding.  I very much appreciare it. 

 

Hi

 i have had five Orencia infusions. The last one I was so ill in bed for 4 days, headache, bodyaches, nausea, just sicker than a dog. The Orencia has just finally kicked in and I an going to try another infusion. My Doctor said it was up to me, but I am really scared. I have had RA for 19 years, and have been on almost all the drugs. I was allergic to Remicade and Humira. Any advise

Hi, I have had RA for 18 years. I went through gold shots, methotrexate, arava, remicade, enbrel and humira, and finally orencia.  I failed all of them, now suspicous of the orencia. The Remicade gave me severe asthma type respiratory problems with the first 3 infusions, each one getting worse and quit them. I started the Orencia last August, 2008. I got the headache and the nausea with the first 3 IV's. After that I seemed to be getting better on the drug, energy and symptoms. Then the end of January, beginning of February around the 8th IV I developed a horrible cough. It got so bad I could hardly get a word out, I would bring up clear mucous, cough so bad I gagged. I visited my family doctor over and over, given antibotics, given inhalers, nebulizer treatments, cough suppressants, nose sprays, antihistamines. I was told to continue all this and not see an allergist right away as they would just tell me to try the same things. Great!  All this time my RA doc is telling me, "it's not the Orencia". Then I found other people with the identical symptoms caused by their BP med Lisinopril. So I changed BP meds. I did get a few weeks reprieve from coughing until I got my last IV on May 6th and the coughing started all over again. I was due for another IV on June 6th and I canceled it.  I have decided I must go cold turkey and see if it is the Orencia as just maybe I have an unknown, undiagnosed COPD condition and the Orencia is compounding it. I was allergic to Voltaren XR, it gave me severe broncho spasms of coughing much worse than what I have now, and this is bad. At that time the family doc I had diagnosed me with pulmonary fibrosis. I investigated my drugs I was taking and found out that Voltaren can do that. I stopped the pill and the symptoms went away. The doctor admitted to me that was the last place he would have looked for a cause. These drugs are horrible! And then your RA doc denies it is from the drug, your other doctors look everywhere but where they should. We need to be our own advocate to the medications we take and make some wise decisions if we have the slightest doubt they are a culprit, and is worth the price we have to pay.  I have had to many bad experiences with medications. I just wish I could find out how long it takes for this medication to fully leave your system. I wish you and everyone else on Orencia quick resolve to your side effects, and continued relief from your symptoms. I just want to stop coughing, then I will deal with any RA symptoms that reappear and in which direction I want to go next. Blessings on you and all other RA patients.

Hi

 i have had five Orencia infusions. The last one I was so ill in bed for 4 days, headache, bodyaches, nausea, just sicker than a dog. The Orencia has just finally kicked in and I an going to try another infusion. My Doctor said it was up to me, but I am really scared. I have had RA for 19 years, and have been on almost all the drugs. I was allergic to Remicade and Humira. Any advise?

I'm sorry to hear Orencia has had such difficult side effects for you.  I did have problems with being too cold and having migraines, but my rheumatologist and I figured out that it wasn't the Orencia,....I was also going off my antidepressants and it seems I was experiencing some withdrawl type symptoms from that.  I'm doing wonderfully on Orencia now,....after at least a year and 1/2 and I've even been able to go back to work,....in a plant nursery,....very physical job and very minimal pain!!!.......I love the short infusion times and it has given me more energy than I had on Remicaide,......I really hope you can find something that will work for you,.....best regards,...vicki

Hang in there.  I have ultimately responded very well to the Orencia in combination with my other RA drugs (methotrexate, hydroxychloroquine, nabumatone, tramadol, folic acid, fish oil, calcium, vitamin D).  I was in a wheelchair in 2003 when I was first diagnosed with RA.  Once you start feeling a bit better you might want to start going to a gym.  It helps a person stay in shape and the endorphins released by exercise are natural mood enhancers.  It gets you out of the house and eventually becomes something to look forward to.  Swimming is a good, low impact way to start,..whether it is lap swimming or an in pool exercise class. 

 

Last year I went back to work, for vacation my husband and I went to Glacier National Park and there was no mountain trail I could not tackle.  I don't need a nap any more.  There IS life after RA but it is a long slow road.  Finding meds that work for you is a huge plus,....for me it was Orencia in combination with the others mentioned above.  Some of my meds are pain killers.  At the gym I now have progressed to working on the cardio and weight machines and do 45 minutes of cardio,...and use all but one of the weight machines.  I have been able to drop 30 lbs I picked up when I was on Prednosone and I have 20 lbs to go.  I have to avoid one weight machine because of the stress it puts on my knee joints, but I am now a fit as I was before I was diagnosed,....and that was 6 years ago!  The pain killers make my work outs easier too because I suffer far less after work-out muscle pain,....!!  Looseing the weight puts less stress on my joints,....so getting your meds squared away is the first step and the rest is "head" stuff.   Take your time, don't tackle more at a time than you can do.  Be kind to yourself.  Take naps if you need them,....hopefully you have some supportive people around you............best wishes,.....