Has anyone stopped Enbrel due to developing Asthma?

Ellen Galo Community Member October 03, 2012
  • Hi - my story is this: I started Enbrel in 2005.  I had never had asthma, though I did grow up with a lot of second-hand smoke and I did have pneumonia at one year old, and also around 2002.

        I was diagnosed with RA in 2004. I tried 2 infusions of Remicade before I quit (crazy itching/tingling under the skin all over my body - would go away in 10 min with Benadryl, but taking Benadryl during the day is not great.  So I quit.

        I started Enbrel in March of 2005. I did my first shot in the doctor's office - no problem. I did my second at home without difficulty, but almost immediately had a panic attack (but no breathing problems) for about 2 hours.  I thought I'd never take it again, but 3 days later, I wanted to (go figure?).  I had occasional flashbacks of emotional stuff but just figured I had to deal with it and got by ok. 

         A year and a half ago (April 2011, I think?), I got a very bad upper resp. infection, I think it actually was whooping cough - terrible!  Then after seeming to get over that, I had so much fluid in my throat, I thought I might gag and drown, it was scary breathing/gurgling through that! I went to my doctor a couple of days later and he confirmed that I was wheezing and probably had post-infectious asthma - he gave me a 2-wk Rx for Advair and said hopefully that would take care of it, but the look on his face, said maybe not.  I was able to cut down to 1/day for a while, but then I would get VERY TIRED, and finally decided it was not worth it, stick to twice a day.  I did gain about 10 pounds which I have now shrunk to 8. I gave up my exercise bike for a while, because I got scared off once when I exercised and got worse.  But I am back exercising - not for long periods, but 10 min/day a couple days a week is better than nothing!

         My PCP doctor is puzzled by the asthma because I didn't have any trouble as a child.

         My rheumatologist had said (because I have a tendency to sinus infections, ESPECIALLY with the Enbrel) try to keep it to once a week or as little Enbrel as I can get away with. 

         Yesterday, after waiting 10 days since the last shot (because I had an emotional meltdown almost as soon as I did the shot, and it lasted all day), I did a shot.  I thought it would be safe.   But I needed my rescue inhaler at lunch 1 pm (thank you Lene and others for encouraging me to ASK for the rescue inhaler last winter!) and then AGAIN driving home from work 4 hours later (5 pm - right on schedule).  So I used the rescue again, but was beginning to feel panicky - so I took a Benadryl, which I try and keep some in my purse for just such an emergency.  I hadn't used it in at least a year, even for sleep! 

         Today at lunch, I felt the same way and used it again, but added 1/2 Benadryl in hopes of thwarting a later attack (allergy, asthma or both?)

         I called both my PCP and rheumy's office and left messages...i think this has to STOP.  Anyone else have a similar experience?

9 Comments
  • Lene  Andersen
    Health Guide
    Oct. 04, 2012

    I'm fond of saying that when I was on Enbrel, I turned into a bloodhound. My asthma and allergies increased so much that I could smell everything. I could smell the moth balls in my downstairs neighbor's closet! When they painted the building I live in, I had to move out for two months. It was fairly intense. However, the benefits of the drug outweighed the...

    RHMLucky777

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    I'm fond of saying that when I was on Enbrel, I turned into a bloodhound. My asthma and allergies increased so much that I could smell everything. I could smell the moth balls in my downstairs neighbor's closet! When they painted the building I live in, I had to move out for two months. It was fairly intense. However, the benefits of the drug outweighed the asthma and allergy issues for me. And also gave me intense muscle pain and after two years, those limited at me as much as active RA. I switched to Humira and I'm doing much better. It still pokes at my allergies and asthma, especially for a couple of days after my shot, but I use my inhaler more and stay away from some of the foods that cause allergies for me. If the symptoms only last a few days after your shot and you can manage with your rescue inhaler, you may want to consider staying on Enbrel if it's working for you. The key is whether the side effects are manageable in your life and only you can decide that.

    • Ellen Galo
      Oct. 05, 2012

      I checked both the literature and two doctors and Enbrel support, and there does not seem to be any connection between Enbrel & asthma, as I first thought.  But what's happening now is NOT manageable, it turns me into a basket case. So I talked with my doctor yesterday and suggested waiting as long as possible (again) and then using a half dose. He...

      RHMLucky777

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      I checked both the literature and two doctors and Enbrel support, and there does not seem to be any connection between Enbrel & asthma, as I first thought.  But what's happening now is NOT manageable, it turns me into a basket case. So I talked with my doctor yesterday and suggested waiting as long as possible (again) and then using a half dose. He thought that sounded like a good plan - and it saved me from driving the 2 hours to his office on the spot (but I appreciated that they were willing to get me in immediately if necessary).

          I've decided that what must be happening is a combination of a) increased stress (i can't WAIT to retire!) b) increased sensitivity to Enbrel (now instead of a mini-meltdown 24 hours afterward, I emotionally collapse immediately, and c) a lot of intestinal gas makes it feel harder to breath - like there is no room, so d) the increased stress, physical and otherwise is setting off a chain of events making me at least feel like I can't breathe, so I eventually start to panic.

          Yesterday, finally, I didn't have to use any extra inhaler doses.  But I waited a little too long for the 2nd Advair dose and had a violent coughing fit, which then made me feel nauseous for the rest of the evening - oh joy.

          I don't get a huge benefit from Enbrel anymore, but blood tests do show that my inflammation isn't high as long as I do a little now and then.  So I am going to try the half-dose thing (I have a feelling it won't prevent it, but maybe it won't last 2 days!  That's about how long Enbrel has a positive effect ... and maybe I can't have one without the other.  But I can't live on the edge of panic and be taking Benadryl during the day either. that made me feel lousy....

           You can bet that if I do have to change to something else, the first thing I will ask for is Humira.  But - if the SED rate stays down, i may just try and do without, for the winter.  As I may have mentioned elsewhere, I managed to get through January, Feb and March earlier this year with a total of only 4 shots! (and some Percocet and Cyclobenzaprint, etc....yes, as Lene is fond of saying: "Better Living Through Chemistry!")

       

    • Ellen Galo
      Oct. 05, 2012

      Heck, it just occurred to me that there is a much more straightforward reason for what is happening.  I had a horrible sinus infection building up for a few months which finally resulted in an ER visit just after Labor Day weekend (couldn't reach my doctor). I took antibiotics for 10 days and felt fine.

           When I was cleared to go...

      RHMLucky777

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      Heck, it just occurred to me that there is a much more straightforward reason for what is happening.  I had a horrible sinus infection building up for a few months which finally resulted in an ER visit just after Labor Day weekend (couldn't reach my doctor). I took antibiotics for 10 days and felt fine.

           When I was cleared to go back on Enbrel, I did a shot, and started to feel worse again within 24 hours.  (and also depressed immediately...)   I waited 10 more days, figuring that would be safe, and now I see that it was not.  The mucus is running down my throat again, my throat is getting sore just where the bronchitis hits, and I am continually clearing my throat.

           I almost went back and asked for another round after the first shot, but i didn't want to over-react.  But it is inevitable when I have, or get over a cold, that's when the bronchitis hits again.  I think I will have to ask for them after all.

    • Lene  Andersen
      Health Guide
      Oct. 09, 2012

      This is one of those moments where I find myself not caring what the literature and the medical profession says. I know that when I took Enbrel, my asthma and allergies went haywire. As did my anxiety. I also know that switching to Humira solved nearly all my problems - although the shot still pokes at my asthma, allergies and anxiety (the three As!), the symptoms...

      RHMLucky777

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      This is one of those moments where I find myself not caring what the literature and the medical profession says. I know that when I took Enbrel, my asthma and allergies went haywire. As did my anxiety. I also know that switching to Humira solved nearly all my problems - although the shot still pokes at my asthma, allergies and anxiety (the three As!), the symptoms are manageable, last only a few days and really don't interfere with my life. After I switched, I couldn't believe the impact on my life, of how used I'd become to being incredibly restricted by side effects.

       

      Why not have a chat with your doctor about trying to switch? Enbrel has caused you so many problems that it might be worth trying something else. If it doesn't work, you can always switch back. The goal of these medications is to enable you to live your life, not restrict you as much as active RA would.

       

      And on the other hand, maybe your problem is that you have bronchitis. How are you doing now?

       

       

       

       

    • Ellen Galo
      Oct. 09, 2012

      I'm doing OK, and frankly I wouldn't take anything until blood tests show that my inflammation is higher than my 'normal' slightly raised... because that's when I get sick and depressed.  I'm doing OK without - yes I have aches and pains but they are coming and going and I think staying calm about the whole business is a lot better than freaking out when...

      RHMLucky777

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      I'm doing OK, and frankly I wouldn't take anything until blood tests show that my inflammation is higher than my 'normal' slightly raised... because that's when I get sick and depressed.  I'm doing OK without - yes I have aches and pains but they are coming and going and I think staying calm about the whole business is a lot better than freaking out when I take it!   The reason I always stuck with the Enbrel was becaues if something DID go wrong infection wise, then in 3 days the Enbrel has worn off.  That has come in handy a few times.  With any other of the biologics, the half-life is much longer (in fact, I think I heard that Humira was one of the longest. Odd, I would have expected Remicade.  But apparently the mechancism is different. Go figure! )

           I heard an interesting story about barley grass from another thrift store board member (a guy) who apparently was hit with RA about 10 years ago and he was in a wheel chair.  He says he 'cured himself' with barley grass - not a supplement, the actual 'food' product.  It took about 6 years, and I think a lot of it was grit and determination on his part.  (Similar story but not exactly RA, with my old vet: he was bitten by a raccoon and got suddenly very sick several months later. I'm not sure they ever figured out exactly what he had - rabbit fever?) There is some info about barley grass, but clinically a lot of it has to do with animal feed.  But the little bit that there is on the National Institutes of Health PubMed clearinghouse of journal articles (one article about a  pilot study treating ulcerative colitis with sprouted barley product - that's malt! - says it did lower the TNF-alpha.  well, that's good news!  And yucca has helped me - I still take it sometimes when I can't risk something else.  But I can't take it regularly, aafter a dose or two it screws up my stomach (didn't use to, but that's the drill).   There are a few studies of Yucca that confirm it acts like ibuprofen.  Also studies about Turmeric (not TUmeric as so many people say!)  It acts, in its turn, like the COX-2 Inhibitors i.e., Celebrex.  But of courfse all of those have their own risks... just a little different.  I've always felt maybe my best bet is to keep rotating between different risks so one doesn't build up too much in any one area or type. 

           So I'm playing it by ear right now.  Anything to avoid the reaction I had the last two times!   (It may be because I have an underlying tendency to depression, but I plan to keep it underlying and not on top!  (If I have anything to say about it! )   My mind/brain can deal with a lot as long as it's not disabled.  I found the last 2 shots disabling until the 3 days were past...Not good!  So I'll take my chances for now since my SED was down in the 20s (No, we won't use the "R" word!)

           When I get a really bad side effect, I take it as a warning - the med is not doing what is needed, it's causing a different problem! 

    • Lene  Andersen
      Health Guide
      Oct. 10, 2012

      sounds like what your vet had could have been reactive arthritis? Dunno about barley grass... somehow, I think that if it were as simple as that, we'd all be munching it.

    • Ellen Galo
      Oct. 10, 2012

      I doubt it was simple and I don't think he's "over it."  It was his choice, maybe he was afraid of the regular meds, or maybe he didn't have a proper diagnosis.  He still doesn't talk easily or move easily.  He does run a small construction/renovation business. 

      The vet was a little different story.... they told him he'd be in a wheelchair...

      RHMLucky777

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      I doubt it was simple and I don't think he's "over it."  It was his choice, maybe he was afraid of the regular meds, or maybe he didn't have a proper diagnosis.  He still doesn't talk easily or move easily.  He does run a small construction/renovation business. 

      The vet was a little different story.... they told him he'd be in a wheelchair if he didn't immmediately go on the strongest meds (he went to Burlington, then to the Mayo Clinic, and each time he got a worse story).  But as as vet, he said, I can't lower my immunity, I get bitten!.   So he tried acupuncture and various other stuff.  It didn't work.  He simply refused to take the regular meds.  He finally went to a doctor in Ontario who had a computer diagnosis program and found out exactly what it was.  I think he may have been (or be) on doxicycline and one or two other things.  But he had to bring in another vet for about half the practice, and also hire high school kids to take care of his stable (he has a some Belgian horses that he shows regularly).  He's just a very stubborn person and believe me, he did not look well at all. But he was determined not to give up the life he'd worked so hard for.  His choice.... in a way, he did have to give up a lot of it, but he used the opportunity to reach out and train teens to do the work and mutual benefit etc. 

      I'm not sure how he's doing at this point because I had to put my cat to sleep a couple years ago.  .  .  He always asked how my daughter was, and how I was doing etc.   "How's your arthritis?"  Always nice to know that someone remembers - and I don't look like I'm not well unless you are around me all the time (my dept chair can see my eyes get reddish when I have to delay meds, and she is very perceptive anyway ...)

      I haven't had a chance to contact my doctor and set something up in a month or so. We'll see what happens.... busy week, but now I'm off for 2 days and heading to my college reunion in Rochester this weekend - looking forward to it, but wish I weren/t traveling alone at this point. It's getting harder .... to drive any major distance.

    • Lene  Andersen
      Health Guide
      Oct. 10, 2012

      we have a couple of posts that might help with the travelling - I wrote one about  traveling with RA and Karen from the Chronic Pain site wrote a post about traveling with fibromyalgia that might also be helpful. You're a resourceful person, so you probably already know most of it... Wink

       

      Have a great time at the reunion!

    • Ellen Galo
      Oct. 10, 2012

      Thanks!