Reliable Sources: Orencia Cough Side Effect & Notions of e-Patients | Rheumatoid Arthritis Warrior

Reliable Sources: Orencia Cough Side Effect & Notions of e-Patients

Blue swirlIf I cited a percentage of patients who get a cough from Orencia, then I’d quote a source – probably a clinical trial. However, if I merely say, as a patient, that Orencia gave me a cough, then that is a firsthand experience and that’s another type of credible source for other patients.

Diabetes blogger Kelly Kunik Tweeted yesterday: As a patient blogger, I’m a credible source@ dealing w/ #diabetes 24X7, for the past 33yrs, w/no time off for good behavior  #hcsm.

Coughing up the truth about Orencia side effects

About a year and a half ago, when I finally found a rheum doc smart enough to recognize

  • that I was allergic to Enbrel (persistent and increasing hives)
  • that I do have RA, even with an often normal ESR and CRP
  • and that Enbrel was doing nothing to quell my RA symptoms…

I was glad to start Orencia infusions. The consummate optimist, I held an infusion party, eager to finally know what it’s like to have an RA treatment that does something. The Orencia loading dose requires the first three infusions two weeks apart, but I had to postpone some due to a wicked cough. It didn’t seem safe.

I decided to skip a couple of weeks of methotrexate too when the cough would not relent. Eventually, the cough improved. I got more Orencia. I coughed.

It was a hard, productive cough. Every morning, I’d cough for an hour straight, unable to talk or eat. I remember Tweeting many days: Still coughing. It started to scare me.

Whenever I shopped, I bought another large bottle of cough syrup. I stayed on it all the time. I complained at every doctor appointment for the next 5 months and it was noted in my chart. Finally, Doc said, “Coughing is a rare side effect they saw in trials with Orencia. I’ve been thinking all along your coughing is a side effect.”

By this time, I was sure of it already. And Doc finally admitted it. Doc scheduled one more Orencia infusion anyway so that I could complete my obligatory 6 months to be certain that the treatment had no benefit to my RA. I bought more cough syrup.

Are e-patients reliable sources?

That story happened to me. That’s why I loved that Tweet from Kelly Kunik during last night’s Twitter HCSM (Healthcare communications social media) discussion. A doctor had questioned whether e-patient bloggers are credible sources.

He argued that patients create “echo chambers” and get information from Wikipedia, which is unreliable. I Tweeted that none of the e-patients I know use Wikipedia as a source for healthcare information. Let’s just say he didn’t agree.

You know what?  In two years, I don’t ever remember a fellow warrior sending me a Wikipedia link on my blog, Facebook, Twitter, or email. Out of THOUSANDS of links! The e-patients I know are reading the daily news, subscribing to email alerts, and doing searches using resources like NIH, Medscape, Johns Hopkins, RxList, and journal abstracts. They don’t post links from About.com or Wikipedia. That’s just my experience.

Can anecdotal evidence be a reliable source?

Another Tweet I loved last night was by Diabetes blogger Kerri Sparling: @Mary_Pat_Whaley @MedMarketingCOE EXACTLY. We appreciate the facts. We also need the anecdotal information. #hcsm

Orencia adverse events drugs.comSeveral people have sent me an email or posted on my Facebook page that they are taking Orencia and have a persistent cough. They’re wondering whether it’s a side effect. They weren’t warned by their doctors either. It’s been bugging me for a while. Why won’t their doctors tell them what I feel compelled to? “Yes, the cough might be from the Orencia. Keep an eye on it and let your docs know.”

One dear lady I know has asthma and a history of smoking. She was on Orencia until recently. Her breathing problems were exacerbated. I worried about her and I started to wonder: Why are they giving this medicine to people who have breathing problems already if coughing is a possible side effect? About that time, COPD warnings were added to the Orencia TV ad that runs here. So patients who watch TV will know. I hope the rheum docs are watching TV.

So how many patients do get a cough from Orencia?

Far down on Drugs.com Orencia side effects page in the For the Professional section in a sub-section on adverse events, a chart shows 8% of patients reported cough from Orencia in a clinical trial. The reason that doesn’t stand out to many docs may be that 7% of patients on placebo reported cough.

Funny who uses Wikipedia as a health information source

True story. You remember the GP who said all those stupid things about RA when my doc was out of town? He also spent 15 minutes trying to convince me that I’m wrong about the thyroid disease I’ve had for over 30 years. He used Wikipedia on his laptop as his source. He actually pointed to the screen and said, “It says right here on Wikipedia…” (I was not seeing him for either issue and I kept referring him to my rheumatologist and my endocrinologist.)

Related stories

You may want to read an impassioned reply I wrote this weekend responding to Dr. Howard Luks in a Quora discussion: “Should the empowered patient be considered an expert in their own disease?

Orencia’s site listing cough as possible “more common” side effect.

Why evidence of side effects may be underreported in clinical trials.

More on the topic of evidence and side effects!

Recommended reading

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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62 thoughts on “Reliable Sources: Orencia Cough Side Effect & Notions of e-Patients

  • March 22, 2011 at 9:32 am
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    Being an evil smoker i will not try orencia thank you for the word once again an outpouring of information i need as a patient.

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  • March 22, 2011 at 9:32 am
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    A lot of people disregard anecdotal evidence, but what else do we have? I know how I feel, what my experiences are, and I have RA. They can do their tests and measurements and etc, but my own experiences should be important to anyone who is treating me. I believe in science, but I also believe in my experiences. Big pet peeve.

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    • March 22, 2011 at 9:39 am
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      With RA, it’s almost all we have. So much of the literature contradicts itself or our experiences. Evidence with genes will be good when we get there. But no lab will ever be able to explain how & where it hurts like a patient. Or measure fatigue…

      Reply
  • March 22, 2011 at 9:52 am
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    Some doctors refuse to believe that patients can be just as smart as they are. That we can read scientific medical journals and comprehend them without going to medical school is beyond the pale for them. I had a doctor almost kill me with a wrong medication and from then on I second guess them all. I refuse to go into a new medication or treatment blindly.

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  • March 22, 2011 at 10:33 am
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    Great post again Kelly. Whilst I can’t comment on Orencia, I certainly know the effect Arava had on me, not least of all ever increasing liver enzymes, pain, exhaustion etc etc. Was any notice taken by my Rheummy? Were any side effects mentioned to me – particularly those that could be especially specific me and my co-morbidities? Even though my Gastro had very specific concerns re my liver and had written to my Rheummy? I don’t think I need to answer that as you already know the answer!!

    I monitored my own LFTs and discussed the results with my GP. I mean are we seriously expected to be simply onlookers when it comes to our own care? Why wouldn’t Drs want to utilise such great resources – namely their patients.

    I too share your concerns about those who either do not have specific knowledge of their illnesses and/or medications, or are not able to advocate for themselves. Not meant in any way as a criticism but I have seen it so many times during my career and amongst my own family. My family don’t do that now thank heavens.

    What an excellent response you posted in Dr Luks discussion, as well as the reference you included at the end. Oh how I wish we had many ‘Dr Luks-a-likes’ in Rheumatology available to us all. In fact in every specialty.
    Thanks to your references to Dr Luks in the past I have read much that he has written. He really is a diamond and a rare one at that.

    And as for that ‘Dr’ that you saw when yours was away, a Dr using Wikipedia! It would be funny if it wasn’t so scary :-0
    I’m still stunned, absolutely stunned at that – wow.

    Reply
    • March 22, 2011 at 11:59 am
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      nothing to add Kathryn – just thanks for the great discussion. We ought to monitor our lft’s because they are our livers…

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  • March 22, 2011 at 10:43 am
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    Bless you Kelly – I am NOT going crazy!!! I just wish this was posted YESTERDAY morning as I saw the rheumy yesterday afternoon – had my 4th dose of Orencia – then saw rheumy and complained about my cough!!! (and sore throat) – he said “It’s not from the Orencia”. So I just said OK…

    I should have printed out the dang prescribing info – which I am going to for my next visit…I refuse to believe that I am “sick”…I’m not! I KNOW it’s related to this darn drug…agh!!!

    And I for one have never gotten any info from Wikipedia or about.com!!! I use pretty much the same sources you do, and I also have access (at work) to Up to Date – which is a comprehensive medical online textbook of sorts, that is updated every couple of months. My company pays big money as a subscriber. The general public can also access parts of it for free, but it is very limited compared to what I can access. But it is another good source of medical information.

    Again thanks for all you do and Bless you…!

    Reply
  • March 22, 2011 at 11:15 am
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    I’ve been working on a post myself regarding what makes a “credible” source in social media! I’ll have to let you know when I finally get it together.

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  • March 22, 2011 at 11:29 am
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    You know this doesn’t surprise me at all. Most doctors think they are experts and won’t listen if they don’t know for a fact that what ever you are trying to tell them is the truth or could happen. They won’t listen to other possibilities or try to learn. The really good doctors say I am going to look into that and I will get back to you.

    I completely believe that Ocencia can cause a persistent cough. As for the placebo group, well when on a trial you have to list every single symptom you experience whether or not it was related to the drug you were taking or not. For the longest time Zyrtec listed one of the side effects as menstrual cramps. What this means is that a certain amount of menstruating women in the trial had the period and had cramps. What it meant to the drug companies is that they had to say that is could be a side effect. What is said to me is that men, prepubescent girls, and post menopausal women taking Zyrtec could experience menstrual cramps. Like that is actually going to happen.

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  • March 22, 2011 at 11:30 am
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    Anecdotal info is important and checking even those rare side-effects, since it doesn’t matter if only 1% have it if YOU are one of those.

    But please don’t put down wikipedia. It should NOT be the only site someone checks, but it seems to be UPDATED even more often than some other sites like medicinenet, WebMd, drugs, drugstore, drugguide, etc. And it is often as detailed. I always check 4-5 different sites when given a new med or even if the generic brand is changed by the pharmacist. But so many people don’t read ANY of the drug info to even be aware of effects, that I would encourage them to check SOMEPLACE just to get into the habit.

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    • March 22, 2011 at 11:52 am
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      Good points and I do love Wikipedia – I just have used it for OTHER things than medical info.

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    • March 22, 2011 at 1:10 pm
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      It is updated, but it’s not necessarily updated by people who know what they’re talking about. For instance, I recently read about homeopathy on there and the authors use all these words as if it’s a valid method to treat any illness, even though the article says in several places that it is quackery. Very dangerous info. It’s good for some things, but you’ll definitely want other opinions than wikipedia for anything medical at all.

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    • March 22, 2011 at 7:53 pm
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      Hi Teri,

      I agree whole heartedly, wikipedia is only as good as the info we the public put on it. (and what we allow to stay on it). It seems to me that many reputable sites and publications can be just as inaccurate.

      My son pointed out to me that once he edited a wikipedia article with deliberately wrong information, he was corrected within hours and informed that such behavior was not acceptable and banned for a period of time! He was so embarrassed at his behavior it took him quite some time to fess-up to me. However when he did so, it was in defense of wikipedia’s credibility and his new-found respect for the site. He learned his lesson.

      We also have a policy of not relying on only one source for any research online or otherwise. It makes sense to thoroughly research any subject and have a range of credible sources as back-up. Research methods 101!

      I also have a pet peev about ‘good science’. What is that? As far as I can tell it’s usually associated with a multinational pharmaceutical company who stands to make a fortune out of what ever the latest drug is. Viox comes to mind. Risk of heart attack and death – Now there’s a fairly significant side effect that didn’t get much of a mention!

      Cheers

      Tracey (lucky I didn’t stay on Viox for very long!)

      Reply
  • March 22, 2011 at 12:17 pm
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    Hi Kelly!

    This is insane!!! Doctors should warn the patients foremost all the possible side effects before infusing/injecting a drug to a patient. Besides, we are the patients…we have first hand experience on what the drug’s doing in our system (good or bad). Doctors should respect that and not think of it as make-up story.

    Being an e-patient really makes a difference.

    I do hope that you do get well soon from the cough, Kelly. God bless always! 😀

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  • March 22, 2011 at 12:56 pm
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    I have seen several specialists over my lifetime for my primary disability (Tourettes Syndrome), and have always been one to check out new meds out there on the market before even going in to see my Neurologist, I was lucky in that I had a neurologist that believed in outlining every possible side effect to whatever medication he was prescribing to me, even if it was a med I had been on previously. I am hoping that I get a Rhuemotologist that has the same qualities.

    As for wikipedia? I am a college student at a major University and in many of my classes we are not allowed to use Wikipedia as a source for research because to many of my professors feel it is a unreliable source because to many everyday people contribute to it.

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  • March 22, 2011 at 1:10 pm
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    This discussion only adds to my RA drug paranoia.

    I have taken Methotrexate since 2004 in various doses…if I complain of joint pain/swelling, my rheumatologist ups the dosage. Off and on through the course of Methotrexate I have had a dry cough and since this is listed as a possible side effect and the cough was never a major issue, I never mentioned in to the MD. I might add that when Methotrexate was first prescribed, I was told by the PA not to read the side effects, just take the meds. In November of 2007, I felt like I was getting a cold one evening, but by the next AM, I felt fine again. That next night, however, I developed a sudden deep cough and coughed up blood. Now, I was on vacation and, once again, felt fine the next AM, so I didn’t mention this to my husband and vowed I’d read info on the internet when I got home. I convinced myself it was the Methotrexate after my sessions on the internet and unless I coughed up more blood, I decided I’d discuss it with my rheumatologist during my next scheduled visit in December. I felt FINE and went to my scheduled appointment. I might also mention that I hadn’t actually seen the MD for a long long time; my appointments had been with the PA only. I told her about the dry cough and after all this time, could it be caused by the Methotrexate? I have no idea why the PA called in the MD, but he came in and listened to my chest and said everything sounded just fine, but he ordered a precautionary chest x-ray. Two hours later, my phone was ringing off the hook…I had a large mass in the lower lobe of my right lung. And so my journey with lung adenocarcinoma began. I have had my right lower lobe removed, a session of chemo, a wedge resection of my left upper lobe, and thankfully have remained stage IV NED since October 2009! But while on this journey, I have struggled with the meds. I went off the Methotrexate twice for each surgery and vowed to never swallow another. But I became totally non-functional with the RA flares. I am back on 12.5mg/week, but because my flares continue (but to a lessor degree), the MD has prescribed that I up it to 20mg/week. I think he is pretty frustrated with me and NO, I haven’t confessed that I continue to only take the 12.5.

    In my reading about RA and lung cancer, no one has ever admitted a link with the auto immune disease and lung cancer or the Methotrexate and lung cancer. Also, in my reading, I found that newly diagnosed RA patients should HAVE A BASELINE chest x-ray. I’ll never know if I already had lung cancer brewing in my body when I started the RA drugs, but I surely wish I’d had the baseline chest x-ray in 2004.

    I also struggle with reading about the newly developing immunotherapy treatments for cancer and my continuing suppression of my immune system to control RA.

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  • March 22, 2011 at 1:48 pm
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    Thanks for the information Kelly and fellow RA Warriors. This is something I have been pursuing the past few weeks. I stumbled upon this site and began re-researching in February. My last 4 infusions have been difficult, each time requiring several attempts to hit a vein that was blood producing. I have tried everything from hydration to relaxation to figure out why my veins are rolling and not producing blood.

    I wanted to see what the latest information was and also wanted to hear how others were dealing with their RA. I posted on FB yesterday how appalled I was to read the notes from my RA doctor from my last 3 visits. He referred to me as being remissive- according to CDAI parameters. Not knowing who or what CDAI was got me searching some more- turns out this is regarding the number of swollen or hot joints. If you don’t have several then you are in “remission”. Now I may be a bit cynical- but what exactly is wrong with this statement?

    “Sero-positive (high titer anti CCP and rheumatoid factor) non errosive rheumatoid arthritis. Today patient would appear remissive by CDAI”

    All three visits from December thru February have that statement inserted somewhere. First of all if I am still testing sero-positive and have elevated blood work- then how in the world can I be remissive? This concerns me as I know that Medicare in reviewing these records will decide I am cured- that my disability should be discontinued and no more medical. I know how this works- I was a disability claims worker for SSDI in the 80’s.
    Then we have the issue of the cough- as Kelly has noted with extensive footwork and notes very little is said about developing a cough. I developed one in November- and as Kelly did stopped taking my mtx and worried I might have a serious problem. Is there a note in my file on that? No. Just a reference that I was PPD negative 4/9/10- which means that in April of last year I did not have TB. My last real job was for a biotech laboratory- I understand how to read trial results- I too noted that 8% with Orencia had coughs, but placebo was 7%.
    Now I could rant for hours about all this- but the bottom line is if doctors do not listen to the patients- who are not on placebo’s and reporting these side affects properly, then where does that leave us all. I believe that first hand knowledge is much more reliable than a trial. A trial is geared to succeed not fail. I was the first patient tested for an alergy to Enbrel- this was because I pushed the issue with the drug company and used my influence at the lab I worked at. Otherwise I never would have been tested. I am always voted as the person most likely to be allergic to a medication. My list of allergies can’t be written on two sheets of paper…
    So this research project I started in February- well looks like Orencia is going to have to be discontinued for this kid.

    Reply
  • March 22, 2011 at 10:12 pm
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    Candles for Camp
    I will be selling candles and accessories for the 2011 season of “Camp JRA”.Camp JRA (Juveniles Reaching Achievement) is a special place where children with arthritis and other rheumatic diseases such as Juvenile Rheumatoid Arthritis, Lupus,Ankylosing Spondylitis, and Septic Arthritis, can have fun, learn about their disease, and form social bonds with others who share their challenges. Camp JRA is a six-day resi…dential camping experience for children ages 8 to 18. Campers participate in a variety of activities designed to provide opportunities for personal growth, improved self-reliance, independent functioning, and development of leadership skills.

    Please join me in supporting The Arthritis Foundations, Candles for Camp JRA by calling me @ 570-903-7319 or going to the link and typing in Arthritis Foundation at check out. They even have a hand-poured candle especially made in honor of the Arthritis Foundation. This is my brother Jon-Jon Johnson’s Camp JRA project this year. He is 17 and suffers from Juvenile Rheumatoid Arthritis and Ankylosing Spondylitis. Thank You Very Much
    Sincerely,
    Jessamyn Reinhard
    Order from anywhere in the world at:
    http://www.lolcandles.com

    Reply
    • April 3, 2011 at 5:16 pm
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      Sorry, but I didn’t see anything about the arthritis foundation or camp for JRA kids when I clicked the link you gave…

      Reply
  • March 22, 2011 at 11:11 pm
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    I am one of those evil smokers!! After the second loading dose my annoying cough began.When I finally stopped the Orencia infusions I was short of breath most of the time. At night I would lay in bed and feel the need to remind myself to take each breath. I was afraid I would stop breathing in my sleep. I mentioned my cough and shortness of breath to my Rheumy and was told it couldn’t be the Orencia because the cough was lasting for the whole month. Do what? I was informed if the cough started right after an Orencia infusion and then left after 7 to 10 days it might be the Orencia. My cough never went away until I stopped the infusions myself. I called my Rheumy and advised her that I would no longer be taking Orencia. It took almost 6 weeks before all of the cough and shortness of breath went away. Needless to say I am a little hesitant to try the next biologic medicine on the list!

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    • July 1, 2013 at 10:28 am
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      Hi, Jamie,
      I, too have experienced the Orencia cough. It seems to be associated with a full body tingling/burning that started immediately following infusion. I was wondering if your experience included this tingling/burning as well as the cough. Also, did your chest feel heavy? Entering week seven since last infusion and still battling these side effects… Thanks in advance for your help.

      Reply
  • March 27, 2011 at 10:42 am
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    I’m not on Orencia, and it’s probably one of the biologics I won’t try. But I’d like to comment anyway.

    The 1st-yr anniversary of my mother’s death was just this past Friday. She died from a combination of RA effects, including pulmonary fibrosis – caused by RA and/or methotrexate. Her rheumatologist treated her with Orencia. She only had a few treatments before developing a severe infection, which rapidly led to pneumonia and then respiratory failure. (Note: my mother never smoked)

    I truly believe rheumatologists should not use Orencia to treat patients who have existing lung disease.

    The week before my mother’s death, I was diagnosed with RA. (currently on Enbrel + MTX). Sadly, I didn’t fully understand the extent of my mother’s illness until her later years. I still don’t really quite understand it.

    As a former smoker (quit about 10 yrs ago), I hope to avoid Orencia down the road. I’ve only been on Enbrel/MTX a short while, but it doesn’t seem to be effective so far. But maybe it will soon. ..

    I recently stumbled upon this website. Thank you, Kelly, for this site, and to all RA warriors who post here. I’m learning so much from all of you.

    I hope my post isn’t too depressing. I’m having a bad day with RA and missing my mom today. Thank you for giving me an opportunity to share.

    Terri

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    • March 27, 2011 at 11:29 am
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      Dear Terri, I’m sorry about your mom. It’s sad to hear but important to tell her story, too. So, thank you for doing so here. Many of us had family members lost to RA also and we can feel a little bit of your pain. But you must miss her so much.

      I’ll hope with you that your treatment brings you relief soon.

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    • April 3, 2011 at 5:43 pm
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      I’m sorry for your loss, Terri.

      I agree that rheum docs should not treat those with breathing problems with this drug. I was warned about it to an extent, the doc said if you have COPD you can’t take it. It seems to me that if it’s dangerous for COPD, it could very easily be dangerous for other breathing issues, especially if you don’t know you have COPD.

      Reply
  • March 27, 2011 at 1:30 pm
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    Terri, I’m so sorry to hear about your mother, and your recent diagnosis too. Deciding what meds to use for refractory RA can sometimes be difficult and frustrating for both patient and doctor alike. There often is no way to predict some of these problems, but perhaps you are right about the Orencia in your mother’s case. I don’t know if there are other such cases out there with Orencia that have been reported in the literature. If you haven’t been to the following site, you might try visiting it for a little support regarding your mom’s situation. I don’t know that it will provide any concrete answers but the site is very supportive of ILD patients and their family members/caregivers and might give you a little more general insight into that particular part of your mother’s health if you should ever so desire:
    http://www.huff-n-puff.net/newforum/index.php

    Reply
  • April 2, 2011 at 11:00 am
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    Report side effects to Medwatch! You can do this yourself, you do not need a doctor to believe you. The information is on your medicine. It is very easy and it will help others. Blogging and posting about side effects will not change anything; filing a Medwatch report will launch an investigation, if enough people do it (I’m told it can only take one or two, depending on the circumstances).

    Reply
    • April 3, 2011 at 4:57 pm
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      “Blogging and posting about side effects will not change anything”

      I disagree, Suzanne. Blogging and posting, “is very easy and it will help others” also. Don’t underestimate the power of blogging. There may be folks out there who are having side effects, but don’t know that the side effect could be from their medicine. If they read that on a blog and put 2 & 2 together, they can then report that side effect to the proper place.

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      • April 3, 2011 at 5:16 pm
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        I think it depends on who is reading the blog in question. 😉

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        • April 3, 2011 at 5:30 pm
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          e-patients 🙂

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          • April 3, 2011 at 5:31 pm
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            1,000’s of them!

      • April 4, 2011 at 8:26 am
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        You misunderstand. The FDA cannot act on information posted on a blog. If you want labels changed, if you want things to happen that your doctor will pay attention to, you have to do your part.

        Of course blogs are helpful in many ways. That isn’t the point. And they are often preaching to the choir.

        When it comes to medication side effects, the saying “put up or shut up” comes to mind. Please file a Medwatch report about any medication side effects you believe you have experienced.

        The link in this passage has timed out, but it is sobering:
        “Enhanced Drug Safety Surveillance (EDSS) Pilot Project ”

        http://acr.confex.com/acr/2009/webprogram/Paper15295.html

        “Purpose: Medication safety is of utmost importance for pediatric rheumatologists (PR), yet there is little to no information available regarding long-term safety in children or the occurrence of rare adverse events for most of the medications used to treat JRA/JIA (Juvenile Rheumatoid Arthritis/Juvenile Idiopathic Arthritis), including nonsteroidal anti-inflammatory drugs. Additionally, there is currently no effective method to monitor potential long-term effects of the many medications used for the treatment of JRA/JIA. The FDA has a voluntary MedWatch reporting system in place (passive surveillance), however only a small proportion of physicians fill out these reports, even though their patients may experience significant events that might be related to medications.

        Conclusion: More than two-thirds of participating PRs have never previously filed a MedWatch form. “

        Reply
  • April 3, 2011 at 4:43 pm
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    “I hope the rheum docs are watching TV.”

    This is sad but true.

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  • April 3, 2011 at 5:28 pm
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    Btw, I had breathing problems with Orencia. I have asthma and a history of smoking also (though thankfully I have stopped that nonsense). I actually had problems with Rituxan as well, but I went nuts trying to clear my throat and coughing when taking the Orencia. I didn’t need a test or Dr. to tell me it was a side effect of the Orencia either.
    Of course, with both drugs, my Dr. encouraged me to continue taking them! (she insisted they were helping the RA…as if that matters when you can’t breath)… I hope SHE watches TV

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  • July 11, 2011 at 8:32 am
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    Thanks Kelly for this post and leading me here to this post. I had 4 infusions of Orencia, and yes my rheummy knew I have COPD and Asthma, with no mention to me about the side effects relating to having lung issues. I develope pneumonia in my r lung a week after having a upper respiratory infection, i go for recheck tomorrow. I have a good pcp who strongly siad I need to reconsider continuing on Orencia or other biologics, since he felt my lungs would not hold up with that medication. After reading these posts, I 100% agree with him. Yes i did noticed I was coughing more but blamed it on allergies. When I informed my infusion nurse at the rheummy office, I got a really big argument from her that my pcp needs to call and discuss this with the rheummy as if my pcp didn’t know what he was referring to. I did some research on medline, here in previous posts and posted the question if anyone had lung issues with Orencia. I feel these rheummys need to really go over each possible side effect with their patients before ordering any medication and pay attention to what other medications we are already taking. Thanks everyone and I love this site because we do know where we’re coming from. Gentle hugs to everyone and to edspecially Kelly for all of your hard work.

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    • July 11, 2011 at 1:10 pm
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      The COPD thing possibly worsening while on Orencia has been mentioned in the Orencia commercials themselves. So I’m a tad surprised that rheumy’s aren’t bringing that up and addressing it more with patients. My rheumy mentioned the possibility of using Orencia at last visit. I said, isn’t that one that probably shouldn’t be used with lung issues? Nothing but a shrug in reply. So what did you decide Vicky? One does need to weight the benefits and risks for one disease versus the other comorbid diseases in these situations. What did your medline search results show?

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      • July 11, 2011 at 8:19 pm
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        I’m behind from being offline all day, but I want to insert here that the copd warning was added to the commercials recently – it was not there last year. I remember when it showed up. They’ve had to add the warnings because of patient illnesses in real world use. There is more to say on this, but for now, I’ll suggest that most rheum docs do NOT realize the risk since it was reported to be akin to that of the control group. I think there is good reason that the incidence has turned out to be much greater than it was reported in CT.

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    • July 11, 2011 at 10:26 pm
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      Vickie,
      Thanks for the discussion. My guess is your rheum doc probably did not realize that risk with Orencia. As I said to Chelsea, the warnings have become an issue over the last year or so but during the clinical trials it was not obvious enough that there was increased risk of lung problems. I’ve heard from several patients since this post & they sound similar to you – their docs did not realize there was an issue.
      I hope this experience won’t close the door for all biologics for you- it’s still possible for others to be safe or effective for you. This issue seems to be only related to Orencia. Also, RA itself has risks to lungs so treatment could turn out to be a benefit to being treated.

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      • July 12, 2011 at 3:23 am
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        “I hope this experience won’t close the door for all biologics for you- it’s still possible for others to be safe or effective for you. This issue seems to be only related to Orencia. Also, RA itself has risks to lungs so treatment could turn out to be a benefit to being treated.”

        Yep, you’re right Kelly. Frankly, I believe every single drug used for RA has had at least a few reports of possibly causing lung issues. No good way to predict in whom though. And often the drugs help lung issues in those who have them from the RA itself.

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  • September 7, 2011 at 9:21 am
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    Hi Kelly,
    I’m currently on Remicade & Methotrexate. I have had a lot of issues with coughing. Doc’s have done a lot of different tests & see no correlation or reason for the cough.
    Just out if curiosity, what is your opinion?

    Kathy 🙂

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  • September 9, 2011 at 5:33 pm
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    That echo chamber argument could be made about doctors too. You know they all read the same journal articles, discuss them amongst themselves relentlessly and make decisions about the attitudes towards certain illness they will have based only upon the echo chamber created in the medical community. It’s not a valid argument docs.

    Medication side effects should be paid a lot more attention too. If you have ever lived in the Mississippi River Valley then you should probably not be on Remecaid. My mom was given it anyway and it indeed did cause histoplasmosis that eventually took her life. Her doc ignored the fact she had lived in that area for twenty seven years of her life and gave the Remecaid anyway. That same doc is still sending us *Her children* medical bills. Two for visiting her in the hospital during her last week of life. So, who is blind here? Who is not paying attention? Was it the patient or the doctor?

    People with RA I find use a wide variety of sources and we’re not so dumb that we cannot process information and fact weed either. Sometimes we’re not heard by our doctors and we seek out answers elsewhere. What I’ve observed is more times than not the people with RA are right and the standard medical attitude is late to catch up with what is really going on with these patients.

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  • January 23, 2012 at 11:21 am
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    Hmmm… I do use Wikipedia as a starting point for information. I also look for pages such as these for more information. I have a cough and am using Orencia but firmly believe the cough is due to allergies not the infusion. My biggest issue…fatigue.

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  • June 13, 2012 at 8:42 am
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    You have to be careful,but if you research your meds and see the patients mention the same side effects over and over ,perhaps you need to give them some credence. When SSRI’s came out no doctor or drug company would admit that some patients had weight gain on the drugs or withdrawal when they stopped them.(Excuse me,”discontinuation syndrome”).Yet if you checked out patient forums you heard this from scads of people.Now years later it’s pretty well established that those drugs cause weight changes in a lot of patients and doctors now do a taper when their patients discontinue the drugs.So,I research all meds I’m prescribed.I try to ignore the doom and gloom entries ,but if something is repeated over and over,I don’t care what the pharm company and doctors say.I’m going to keep an eye out for it.

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  • October 20, 2012 at 10:51 am
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    Hi! I am on Orencia injections. I have noticed that the joint pain has FINALLY gone away! BUT the side effects I notice are: my ears feel like they are raspy ~ I can hear myself in my left ear when I talk or cough or anything ~ like a cold. I also get thigh weakness by afternoon. Also, after 5 weeks, I am just now starting to feel my joint pain coming back already. I am also losing weight. WHich is ok but I am 5’9″ and now 127. I can lose a few more pounds, but that is it. I was a light smoker for 20 years (I am 42 and watched my dad suffocate from COPD) and don’t want any sort of lung problems ~ so am watching out for that. I have also noticed that it has made my sjogren’s symptoms MUCH worse. I also have Lupus.

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  • January 2, 2013 at 8:42 pm
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    I’m a 43 yr old female – to be 44 on Xmas day. I’ve had RA for 12 yrs. I figured it out on my own- cause my symptoms don’t look normal- and finally had a test. I was right. After that- I picked the first medication available to me- out of 3- and took Sulfasalazine. I was allergic to it- and didn’t know- until the 2nd dose- and wound up in the hospital for a week. I have allergies to chemicals- but there isn’t testing for it. Since getting RA- it’s changed my whole system- I’m now allergic to drugs and antibiotics- some I’ve had before. I have figured out which families- mostly. But am so scared when I have to take any meds!

    They put me on methotrexate for some years- until I became allergic to that. I had splotches all over my stomach and legs. So I never took another dose. While on it- only problems were hair loss, memory loss (pretty bad), and mouth sores. I found that dropping myrrh extract on the sores helped heal them faster. But sometimes up to 5-7 in mouth at once- hurt to eat.

    I took enbrel next- and was on it for 5 yrs. Was WONDERFUL. I really didn’t have any side effects- felt better than I had since the start of RA. I really never had any flair ups- until years into this. And only a few times- hands and other joints hurt more for a week then ok. But then my blood work started to show- low platelets. It happened a few times. Jan- July it got so bad it was off the chart low. Was taken off it and after 2 months picked a new drug.
    I’ve also lost at least 12-15 lbs for no reason this year.

    Orencia- took 2 doses- Aug. 1, 2012 and Aug 15th.
    Aug 23- sick!!! flu? sore throat
    Aug. 27- urgent care- collar bone hurt so bad- xrays – all ok- RA pain
    Aug. 28- UTI (had protected sex)
    Aug 30- throat really hurts, diarrhea, spotting/bleeding (I’m post menopausal)
    Sept 7th-11th took Cipro for UTI (tried to fight myself w/cranberry juice and fluids)
    Sept 12 – Dr. appt- throat so bad- Upper Respiratory Infection- they were worried I’d have pneumonia in a week and gave me Azythromycin for 5 days.
    Sept. 20- UTI (had protected sex)
    Sept 24- 7 days of Cipro for UTI
    Sept 38- throat worse- Dr. appt. Took me off of cipro- making throat worse.

    October- started taking temp. because dr. visits showed fever. Usually normal to 100 degrees

    Oct 6th- blood work done – showing nothing but I had an infection
    Oct 10- tongue on left side- feels burnt- like I ate hot food
    Oct 19- throat culture done and more blood work- showing – I don’t have strep and blood normal
    Oct
    Nov 4- lymph nodes on left side of neck swollen
    Nov 16- RA dr. visit- more blood tests done
    Nov 25- left jaw,skin around it feels tight and pain
    Nov 26- Dentist – full xrays- they show no infection or tooth problem
    Dec 1 – head above left ear hurting- jaw feeling numb
    Dec 4- urgent care- jaw and inside mouth on left side- numb Ct scan shows nothing
    Dec 6- hematologist – more blood tests- referred to Ear/Nose/Throat dept.
    Dec 10- ENT- scoped my nose- and did a bunch of blood test. Gave me 2 weeks of Clindamycin.
    Dec 11- 12 – tingling in jaw- slowly getting a little feeling back, throat still hurts, cough, easily tired.
    Dec 24- stopped taking the antibiotic- and I never got better. Jaw/mouth/lips still numb.
    Dec 26- neurology appt – they ordered an MRI
    Dec. 31 – MRI done- waiting for

    I’m still not better after all these months. The ENT says go to my regular dr. and RA dr. I’ve done this for months. They haven’t done anything. With each doctor I see- they tell me to see a new dr. or one I’ve already seen!

    I think I have some type of infection in my throat or ear area- that has swollen and is now pinching nerves!
    I’m getting scared- if the antibiotics don’t work- I’ll get worse again. So sick of being sick, sigh…

    Anyone have any ideas or opinions? My RA dr. wants me to pick a new pain med- and I’m not even well yet! I told her no way.

    Sybil

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  • February 5, 2013 at 10:04 pm
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    I am doing research on all side effects of the orencia infusion and how often the dose should be given. I just found out today that my ex mother in-law has been receiving this infusion for the last 15 months every 4 weeks like clock work. She gave me a call today to let me know that she has been diagnosed with stage 4 lung cancer. About a monthy ago right around christmas I had received a call that she was going into emergancy because she was having difficulty breathing and was having blurred vision. She went in and had surgery on her eyes because she was diagnosed with glaucoma. If anyone has any information. websites, similar side effects, or any kind of information please email me. I am trying to learn as much as possible and help her out. Thank you!!!

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    • February 5, 2013 at 11:27 pm
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      I’m very sorry to hear about your loved one. I hope she can get the best help possible. As far as I know that is the usual dosing schedule.

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  • March 11, 2013 at 3:07 pm
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    I was on Humira for about 5 years and it possibly lost its effectiveness so my doctor told me to chose another medicine. We narrowed it down to 2, Orencia and Cimzia. I have researched both and I had decided to go for Orencia, and was truly excited, until I read the comments on this page. I have no problems with my lungs accept maybe a very mild case of asthma which I’ve always thought was allergies, and still do. I also developed symptoms of Sjogren’s Syndrome. Should I still consider using Orencia? People seem to have great results with it. I’m just worried about getting a cough and possibly something worse down the way from taking it. Thank you for any advice you can give.

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  • March 18, 2013 at 7:14 pm
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    I see this post and comments are from last year however I am THRILLED to have found it. I just took my 3rd self-injection last night of Orencia. I have noticed a really bad cough with wheezing – unfortunately I am a smoker. I do not cough a lot from the smoking. Would love to kick this habit however when I am down or stressed I reach for the cigs. Of course with the RA I find it is easy to be stressed or frustrated! “catch 20-20” ….
    Seeing my Rheumy in the morning and will be discussing this!
    Thanks so much and God Bless!

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  • May 10, 2013 at 10:17 am
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    Maybe the reading of all the comments has been a Godsend and has answered questions and my own thoughts about starting Orencia,or other. I was on Humaria for almost a year. I do believe it helped, but some of the health issues I had I believed were related to the med. Because of my history of docs I am hesitant to believe any of them, and have been so right in my own dx of symptoms and side afects not explained to me, there is a lot of caution on my part. After stopping the Humira, my doc started me on Arava. After ignoring symptons thinking it was allergies for a month I called the doc after reading again about the side effects and was told to discontinue the Arava. I still have problems with my throat and coughing, but not as bad as it was. And this doc wants me on Orencia-NOT on MY LIFE! My allergies are so bad that at times I wheeze and cough and some look at me like I am going to die. I have never had a dx of Asthma, just horrible allergies at times. Many of the allergy meds I couldn’t take due to an allergic response and can not take most pain meds. It seems like my RA stays fairly under control w/MTX and Pred. The doc cut back ny dosage of prednisone to only 5mg a day. The most pain I have is in my hands with minimal foot or knee pain sometimes. The doc always says my labs are good and I do not understand any need for Orencia or other med to finance the already wealthy, at my expense. I have tears in my eyes just reading all this, and have so many questions as to the care all patients recieve. There is only one Rheum doc that I had out of three, that I felt comfortable with and if my present doc keeps up the present attitude I may try to get back to the original doc I had. Thank you for all the comments regarding the Orencia. At my age of almost 70 I would like to live it in peace and not at the expense of health issues more than I have.

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  • May 10, 2013 at 7:42 pm
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    In reading this about Orencia, I’m wondering if anyone out there has had coughing problems while on Simponi? It is so aggravating but I had not connected it to possibly the Simponi until reading about Orencia. I’ve also been on max dose of MTX injections weekly.

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    • May 11, 2013 at 1:14 pm
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      Nancy, I haven’t heard anyone say they have a coughing side effect with Simponi, but there are several ways that rheumatoid disease can affect the lungs so please make sure to tell your docs about all your symptoms. Also, rarely, mtx can have a side effect on the lungs so they would want to check that out too.

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      • May 11, 2013 at 6:46 pm
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        Kelly – there is no use in telling my rheumy doc about the cough. I have had pain deep in my right rib cage and back on the right side for months now. It is continually getting worse. I told her about that last appt and her only comment was it isn’t related to the RA or the meds. I had a pulmonary embolism 4 years ago with complications and almost died (coded twice and numerous blood transfusions and surgeries). So my right lung is already compromised and damaged. She did an x-ray to see if I had a broken rib. I already knew that I didn’t. But…..I feel as if I just have to tough it out and pray it isn’t anything serious. 🙁

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        • May 11, 2013 at 7:18 pm
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          Nancy, do you still have a pulmonary doc? I’m worried if this is not being monitored; toughing it out is what we do usually & it doesn’t always turn out best.
          And your rheum should know about the symptom whether she listens or not. Of course it would be best to have a rheum doc that knows about lung issues and takes seriously what you tell her, but I know that can be hard to find sometimes. So, we have to find someone to see for our knees, or eyes, or lungs, or neck…

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          • May 13, 2013 at 6:56 pm
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            My pulmonary doctor released me two years ago. I could go back to him but don’t like the hospital he uses, although I think he probably saved my life. I am seeing my primary care doc in about 5 weeks. Unless the pain and coughing get worse, I will talk to her about it. She listens better than the rheumy doc. It is just so hard to keep from getting frustrated, as you well know. Thank you for all you do and for your concern. Love & prayers to you!

  • May 11, 2015 at 2:41 pm
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    I have been on Orencia for over a year, after 5 years of Enbrel. I developed a rash on Enbrel and all other TNF inhibitors that my Rheumatologist thankfully recognized. This past winter has been the worst winter of my life, with cold after cold after cold, and continuous coughing between the cold episodes. I saw my dr. In April, and he told me that Orencia could make the upper respiratory infections worse, which I did not know. My cough is finally clearing up, so I will continue with the Orencia, but next winter, I will be prepared.

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  • January 4, 2016 at 12:57 pm
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    I’ve found this blog site while COUGHING and COUGHING, and clearing my throat constantly … I am an Orencia patient. The drug has been marvelous, otherwise, and has been better than several others I have tried over the years – but this persistant throat clearing and coughing (especially when I lie down in bed at night) is VERY annoying. Does anyone have a suggestion for the persistant coughing and throat clearing????

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    • January 5, 2016 at 11:57 am
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      Hi Laura,
      Have you seen an ENT? It might be the Orencia side effect – especially if it started at the same time. But since it “works” for you, maybe you could find a way to “treat” the side effect. Or also good to have it checked out to make sure it’s not something else.
      It was a no-brainer for me since Orencia didn’t help the RD.

      Reply
  • May 2, 2016 at 8:41 am
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    Hi. I’m having the same problem. Orencia has been a miracle med for me but in the 2 months I’ve been on it I have had 2 severe upper respiratory infections, 1 hospitalization, and my asthma is terrible. I don’t want to stop the Orencia but my lungs are seriously struggling. I’m working with a pulmonologist but honestly I don’t know if this is going to work. I can’t be in and out of the hospital all the time!

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  • September 30, 2016 at 10:31 am
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    I am on Orencia and recently treated for infected canker sores in mouth. Developed cough that won’t go away. Ribs hurt. Had childhood asthma and I am a former smoker.

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    • October 8, 2016 at 4:54 pm
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      Hi Cheryl, since you are a smoker, your doc should watch closely. Orencia might not be the best option with the cough side effect. Maybe you can ask your doc about a trial postponement of the next Orencia treatment to see if your cough improves. Rib pain can be common with the inflammation of joints, but can be worsened by frequent cough.

      Reply
  • September 27, 2017 at 3:41 pm
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    FWIW-I found taking a Mucinex (Guaifenesin) 600mg before bed every night helped combat the cough. Although it’s not a “drowsy” med I find it makes me a little foggy so I only take at night. My Rheum, GP, and ENT all said it’s fine to take indefinitely. There’s even some conflicting studies that say it combats the symptoms of fibromyalgia as well. It also helps my post-nasal drip during allergy season. Multiple birds…one stone.

    Reply
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