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Is anyone else alittle uncomfortable about the news of Glenn Frey?

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Posted 1/19/2016 12:41 PM (GMT 0)
I guess I am a little off my usual strength and getting older is making me wonder more....I heard last night that he died of complications of UC and RA and pneumonia. It threw me for a loop for the night.....not that I am worried for me, but it does make me think.
Posted 1/19/2016 12:59 PM (GMT 0)
Eagles manager Irving Azoff reported "The death of Eagles cofounder Glenn Frey on Monday at age 67 can be blamed in part on the medications he was taking".  Irving's Attorney advised him not to name the medications.  For now we can speculate.  Wonder if he was taking a Biologic and developed infections?  One thing is for sure he was a very talented Writer, Musician, and will be missed.
Posted 1/19/2016 1:53 PM (GMT 0)
Definitely will be missed. It's a terrible loss to the music world. I didn't know he had UC. And that's great, I'm just getting over pneumonia. That poor guy, though, I love the Eagles!
Posted 1/19/2016 3:10 PM (GMT 0)
I agree. It disturbed me and I find myself trying to find out as many details about it as I can. Sounds like his UC came back in November and he needed surgery. Age 67 is not that old. So sad.
Posted 1/19/2016 5:01 PM (GMT 0)
I got pneumonia from remicade, steroids and methotrexate. I ended up with sepsis, septic shock and respiratory failure from it too. I am thankful I didn't get HSTCL, but this was pretty bad. I spent nearly a month in the ICU unconscious.
Posted 1/20/2016 11:28 AM (GMT 0)
It made me stop and think when I heard it, but as I've said numerous times I made the decision for quality of life while I'm here. I'm not being sarcastic or unfeeling it's just the way I have to think of it so I don't dwell on the negative possibilities of the chemical soup that keeps my body functioning.

RIP Glenn.
Posted 1/21/2016 10:05 PM (GMT 0)
As a mother of young son with Crohn's I do get anxiety issues now and then. Glenn Frey news was one of the trigger factors. I tried to look for more information what kind of medication he was taking. My son is in remission taking biologics. I just wonder what that means in long run! But usually try to read some encouraging stories on Healing Well and on other websites to cool myself down!!
Posted 1/24/2016 2:40 PM (GMT 0)
I'm from that music era, though a little younger, and liked their music too. I've been well aware of patients who've died from complications of UC and Crohn's over the years, so it's not a surprise. I've had sepsis and nearly died from it myself - have aphasia as a result and a reminder - so when someone makes light of these diseases, I just sigh...
Posted 1/26/2016 2:01 AM (GMT 0)
Absolutely made me think. When I was put on Imuran along with my Cimzia, every day that passed I would get progressively more short of breath so I stopped taking it. I often wondered if I had continued to take it , what happened to Glenn Frey may have happened to me too.
Posted 1/27/2016 7:31 AM (GMT 0)
@lamb61, I'm the same. I am on Humira, I take xanax, ambien, percocet for occasional pain and I sometimes stop and think about the chemicals I am loading into my body - while also being vegan, eating mostly organic, and mindful of what I put in my body. But I know that when my meds stop working I get very sick, and I would take today's health over tomorrow's uncertainty anyday. I also believe that when my drs have been wrong in the past about random things, it's been the good habits like green juice and (gentle) yoga and meditation that have at least kept me out of the hospital. Although that sad news did make me a bit nervous for a few minutes......
Posted 1/29/2016 12:57 AM (GMT 0)
I just read an article about Glenn Frey's death caused by complications of RA, ulcerative colitis & pneumonia. The article hinted that being on biologics weakens your immune system & ultimately shortens your life. I'm due for my next Remicade infusion in a few weeks. I'm so confused. I read both sides (anti drug & pro drug) for getting healthy. The thing I know for sure is I'm scared to be on Remicade - but even more afraid to have another flare. Stress definately doesn't help Crohns either. 😔
Posted 1/29/2016 1:15 AM (GMT 0)
It really bugs me that so many articles - and so many people who comment below articles - have implicated biologics in his death without knowing the facts.

For one, no article that I've seen even tells us that he was on biologics.

Secondly, he had been hospitalized for quite a while for his RA & UC, meaning they were quite severe.

Thirdly, it's likely he was on high-doses of prednisone, or even IV steroids, while in the hospital.

Fourth, research quite clearly shows that the risk of such infections is only *slightly* higher than normal when a person is on biologics, or biologics plus immunomodulators. BUT, if you add high-dose steroids into the mix, meaning the person is on biologics plus immunomodulators plus steroids, or just one plus steroids, then there is a clearly higher risk of opportunistic infections.

So without knowing the facts, I wish people would stop blaming medications we don't even know he was taking. And if there's a lesson in all this, it's to try to avoid getting to the point you're hospitalized and on high doses of IV steroids. That means instead of being afraid of biologics, people should stop waiting so long before getting on them.
Posted 1/29/2016 1:22 AM (GMT 0)
beave,

I'm in agreement with everything you said. In fact very much in agreement, except for one thing.

Sometimes the medical community can be so difficult to deal with, that it can prevent you from getting early enough treatment before things get ridiculously out of control
Posted 1/29/2016 1:37 AM (GMT 0)

73monte said...
beave,

I'm in agreement with everything you said. In fact very much in agreement, except for one thing.

Sometimes the medical community can be so difficult to deal with, that it can prevent you from getting early enough treatment before things get ridiculously out of control

You're quite right, unfortunately. Being an advocate for yourself (or for a loved one) and constantly having to fight the system is a full-time job and then some. Many people don't get the treatment they need on time.
Posted 1/29/2016 1:58 AM (GMT 0)

73monte said...
beave,

I'm in agreement with everything you said. In fact very much in agreement, except for one thing.

Sometimes the medical community can be so difficult to deal with, that it can prevent you from getting early enough treatment before things get ridiculously out of control

Amen to this post.

For 11 years my disease was undermanaged. In the early years, I didn't have a clue - I suppose if I had pushed for it I might have been able to get onto azathioprine or 6MP earlier than I did. But the biologics I had no control over. Even if I'd wanted to, I couldn't have gone on Remicade any earlier than I did. My previous hospital promised me Remicade but only for 3 doses. The 3 doses never materialised and eventually I was point blank told there was "no point" to my having them, as they wouldn't be enough to get my disease under control.

Long story short, things did get ridiculously out of control. I feel like it's unfair on my current hospital, who have picked up the tab for my Remicade, hospitalisations, surgeries, etc., but when I joined them I didn't know that the sh!t was going to hit the fan a few months later.
Posted 2/12/2016 3:50 AM (GMT 0)
I think I am mostly confused by reports that his RA medication CAUSED his UC. I'm not quite sure how that works....
Posted 2/12/2016 12:34 PM (GMT 0)
OK this went way off my original intent of the post. I am not uncomfortable for the meds or the news stories. I am uncomfortable because having someone in a similar situation dying made me think of my own mortality---especially since I have been pushing life insurance companies to stop looking at IBD as a dire life sentence. The 6 degrees of mortality made me think...and turning 50 this year didn't help. I am sorry some of you went down the media controversy.......
Posted 2/12/2016 11:32 PM (GMT 0)
Understood. Studies have shown that people with IBD have a shorter life expectancy on average - but it's pretty small. To make up some numbers, say the average life expectancy for a woman in the US is 78. With Crohn's it might be 77. For a man in the US it might go from 72 to 71.

So to me those differences aren't worth fretting about and worrying that 'oh no my IBD is going to make me die early.'
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