Orencia side effects

4/ 4/08 11:11pm

I AM NOT ON ORENCIA, BUT I DO FEEL CHILLED ALL THE TIME.I WAS DIAGOSED IN JULY 2007 AND STARTED TAKING PREDNISONE. OCTOBER STARTED METHOTREXATE. I AM COLD MOST OF THE TIME. MY POOR HUSBAND WOULD COME HOME LAST SUMMER AND ASK IF THE AIR CONDITIONER WAS BROKE. IT WAS 90 OUTSIDE AND I HAD IT 84 INSIDE. I THINK IT IS JUST THE INFLAMATION WE HAVE. I TELL PEOPLE THAT I WENT THROUGH THE HOT FLASHES AND I'M GOING THROUGH THE COLD FLASHES NOW. I KEEP BLANKETS AND SHIRTS NEAR.

CINDY

cre8tionist

4/ 5/08 8:54pm

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

Anonymous

11/14/09 8:19am

I have been on Orencia for 5 months and it has helped. I do however notice the cold

and also have horrible fluid retention in my feet and legs!

Was concerned it was my heart?

I am on 5mg of Predisone also & had weight gain/moon face.

cre8tionist

11/14/09 9:42am

Any time you think there might be a problem with a heart you need to contact your physician and make an appointment asap. I have never had fluid retention with Orencia, I did have it with some blood pressure meds I was on once. It seems someone else posted they had swelling of their hands so maybe this is a side effect for some people. I'd call my rheumatologist asap if I were you and let them tell you if you need to come in or not (vs. waiting for your regular appointment). Moon face is a problem with Prednosone and I had it too,...I never thought I was a vain person, but when I got the moon face I was very disappointed with my looks. It went away once I got my meds regulated enough to go off the prednosone. I take "water pills" that help with the water retention from my blood pressure meds. Good luck,....don't take the heart thing casually,....I'm not a medical person, but am concerned for you,....good luck!

Maria

4/10/08 7:16am

I, too have noticed that I am cold at night...my hubbie complains that I am smothering him with blankets! I do want to add that you need to have your thyroid checked...this can also be symptoms of thyroid disease, which sometimes occurs in patients with rheumatoid arthritis. The hot flashes could be thyroid problems as well. I, too, get a headache during my infusions.
I also broke out in about 10 blisters over my abdomen last time. My orencia just started working, so I'm fearful that if this happens again, I might have to discontinue my infusions!
I am a registered nurse, by the way, so I do give pretty good advice Big Grin

. Please go have your thyroid checked.

Anonymous

11/14/09 8:24am

I also have developed blisters in the abdomen area and have been on five months

Anonymous

7/27/08 11:02pm

When I first started taking Orencia I was getting headaches they are not to strong now and I don't get them with every infusion. I have hot flashes sometimes at night or even in the grocery store Ha!!! I am always cold due to anemia. I have to say that I have not experience to many side effects with this drug. I'm doing much better that I was first and I have been on two other biologics Enbrel, Remicade and they both didn't work. My pain is so bad that I can't function. I'm glad that I have something that works. I have my life back I can go on vacations take a walk in the park go to the mall etc. Three years go none of this was possible. My mood is much better I am not snapping my kids heads off or yelling at my husband because I'm in so much pain. Orencia is working for me and I hope it stays that. Good luck

Dx 1996 RA 12 years: Orencia, Mextho, Folic acid, Fosamax, Prednisone.

agirlcop

9/23/08 4:55am

I had the three infusions starting every two weeks. I got Pnemonia and had to stop. I just started back last week. I too have noticed that I have hot and cold flashes while taking the first time and since starting back. I also stay cold, I also am anemic. My problem is that my husband has COPD and has always kept our house 65 - 68 winter and summer. I always stayed cold but I would cover up and be fine , since developing RA he doesn't understand that covering up doesn't help the pain, even under a electric blanket it cold makes my pain intense. I also have RA in my lungs so its a struggle its hard for me to breath if its hot, the heat pump cause dry air that makes it hard for my breathing, but the cold is H... on my pain. I also run low grade fevers, causing chills till it breaks into a cold sweat and I FREEZE. I'm praying the Orencia is miracle drug for me as it has been for many. I have done it all, any oral drugs that are out there, Gold shots I was alergic, Prosorba which I got an staff infection and four blood clots where I spent 20 days in the hospital then went home with a picline (a main line IV), I was givin a 30% survival, which the Lord was ready for me, at times I was ready to be with him, but thats his call. This disease is A BEAST!

tej

1/24/09 8:49pm

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.

cre8tionist

1/27/09 3:57pm

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.......

Patti

4/ 5/09 1:26pm

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.

cre8tionist

4/ 6/09 7:38am

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)......

Patti

4/ 8/09 8:08pm

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.

RA in LG

6/ 1/09 6:28pm

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

RA in LG

6/ 1/09 6:28pm

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?

MJ

6/ 1/09 11:15pm

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.

Cynthia

11/25/11 9:38am

I had to stop Orencia after the 7th infusion blinding headaches 24/7. They did lessen after the 5th infusion though. However the constant nasal congestion and sinus/bronchitis continued, so I stopped. Enbrel worked; but had low neutrophil count. Back on 25mg methotrexate, plaquenil and 5mg prednisolone. Have been offered Actemra 4 hour monthly infusion like Remicade. Hang on in there for a few more infusions as my hedaches did lessen. I found Tynelol was the only thing that relieved my headaches.

Cynthia

11/25/11 9:50am

I had much the same side effects as you. My RA dr. I live in Tasmania, Australia, where Orencia is rather new and my ra dr. only had a few patients on Orencia. I found after the 7th infusion that the side effects were too uncomfortable. Have been off Orencia 6 months now and am not coughing up balls of mucous, sinus/bronchitis, nasal congestion gone. Am back on 25 mg methotrexate weekly, plaquenil and 5 mg prenisolone daily. Don't know how long I will stay on prednisolone.Increases appetite and therefore I overeat. Have been offered Actemra, and am still thinking about it. I believe it can lower the neutrophil count as Enbrel did. I loved Enbrel , worked like a dream but had to stop. Good luck to you.

Any one else tried Actemra akatocilizumab.

Mrs. Woods

5/ 9/09 12:57pm

I have been taking Orencia infusions for a year now and I have had the same problems as you have mentioned the headaches, temperature regulation. I am always cold and you can feel my legs and feel the cold at times my bones ache from the cold. I now have chronic back pain, sinusitis and migrane headaches. Never in my life have I had migranes, but I now wonder which is worse the relief from arthritis or the migrane headaches & sinusitis and back pain which alternate from week to week. I am currently looking into wholistic medicine because with the med's I am currently are not impoving my quality of life if anything it's making it worse.

cre8tionist

6/ 3/09 8:41pm

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

Anonymous

7/22/09 11:50am

I have not experienced the headaches however; I have been getting cold chills now & then. Have been suspecting it might be the Orencia. See my doctor on Friday and will ask him. This will be my 2nd monthly infusion. Still have swelling going on in my hands and feet. Good luck!

Anonymous

11/ 3/09 7:22am

Having just had my second infusion, I am noticing that my fingers are swelling and I am feeling more discomfort in my knees and elbows. On one occasion after first infusion, early one morning, I had a severe flushing feeling in my neck. Very strange feeling. Overall, though, I feel well. No bad reactions. Hope this is a drug that I can benefit from.

cre8tionist

11/ 3/09 8:03am

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,.....

smunson

4/20/10 11:49pm

I have been on orencia for 4 months. I also take many other drugs(Methotrexate, Prednisone, plaquinal, and lots of NSAIDS) I have noted frothy urine with a yeast type smell, profuse sweating on one side of my body, tempeture regulation problems and headaches. I dont know if the drug is working or not, but I'm still upright and functionig. All this is a little much some times and I dont completely understand but niether does my Rhumatologist.

Daveb

11/21/11 9:43am

i've been on orencia for about 6 months now. Humira didn't work. I'm still on methotrexate and prednasone, and have experienced the headaches and cold. I also, after my 2nd monthly infusion and a DVT, blood clot behind the left knee. Now I've never had blood clots before, I've never even brused easily, now all of a sudden I'm on blood thinners also. Has anyone else experienced or heard of this?

BerserkeRA

11/21/11 4:40pm

That is a side effect of Orencia, and I had it while I was on Orencia.

Daveb

11/24/11 8:16pm

Are you saying you also had blood clots while on orencia? I've not been able to find anything in writing anywhere about it, but I'd like to confirm it if possible so I can discuss it with my rheumatologist.

BerserkeRA

11/25/11 12:44am

No, I was replying to the original post about the chilled feeling.

Daveb

11/25/11 7:49am

Thanks..appreciate the reply

Daveb

11/25/11 7:51am

Thanks..appreciate the reply

Cynthia

11/25/11 9:23am

Are you still on Orencia. I had to stop due to constant pounding headaches 24/7 and continual nasal congestion and sinus/bronchial problems. Had been on Enbrel. Loved it; but my neutrophil count became too low.Am on 25mg methotrexate, plaquenil and prednisolone. Are as effective as Enbrel. Orencia started to kick in after the 7th dose; but I could'nt cope with side effects. I live in Tasmania, Australia and was the first person here to have the infusion at home. There are not a lot on this drug here.

Kris

12/12/11 9:26am

I am a 44 year old female diagnosed with RA 7 years ago. I have just started Orencia. Had my 3 loading doses, and will have my first monthly dose this week (2 months on it). I have started getting bad migraines. I have always suffered migraines, but these seem to be coming several times a week, give me nausea, and don't go away for days. My headache medicine does relieve the symptoms, but they come back. I have read that some people have this problem, with 75% of them seeing increased migraines from 1-6 months into the Orencia. I am going to try and hold on tight to see if they will diminish.

I was on Enbrel for almost 7 years, and cried when I found out it wasn't working anymore. Currently on Orencia, 7 mg prednisone, folic acid, vit D. My migraine med is butylalbital- works great but must be careful because it does contain a barbituate. I have never found another med to work better for the migraines. Sounds like headaches are a definite side effect, but for many once you cross that 5-6 month barrier they decrease or go away. I have also had trouble regulating my body temperature- I kept checking the thermostat because I was convinced it was broken! For everyone battling RA- my best wishes and I hope that you find something that works. Thank God that there is alot of research being done right now into new therapies! Hopefully we will have a cure in our lifetimes or at least a way to get permanent remission.

BerserkeRA

3/ 1/12 12:56am

I am currently trying Humira because I didn't feel enough of a benefit from Orencia to get me moving again. It helped, just not enough. When I go back to it, I'm going to push for the at home injection.

THearsnancy

5/26/12 11:50am

I had my third orencia infusion 2 days ago. After the second one I started getting headaches the next day. They were bearable most of the time and often I was able to ignore them. They did not respond to pain Mede. After this infusion I was in the mall and almost passed out the pain was so debilitating and have had a HA since. It's different than any H A I have had as it is the top of my head and alittle down the rear g( I have had problems with frontal HAs before but never this type). I can't even lay my head on a pillow as it hurts to touch it. I have been on seven other Mede and had to stop as they were not helping or too many side effects so I am running out of options. Today my HA is worse than yesterday. Should I expect them to get better or will I have to stop orencia? I said I will try one more infusion.thanks

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