1. < MAC & Bronchiectasis

Chest and upper back pain with bronchiectasis and pseudomonas

Posted by joann @joanng, Sep 2, 2020

My visit with my pulmonologist today was extremely frustrating. He informed me that my pain in my chest and upper back must be related to something else because lungs can not cause pain. He told me bronchiectasis only causes chest tightness and a cough. My pain is not in my head but It is difficult to accept it’s caused by another problem and not my lung disease and infection. Any input from personal experience would be appreciated. I’m very frustrated to think I have another ailment causing the pain.

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joann | @joanng | Oct 1, 2020
In reply to @woot "I’m surprised no one has mentioned pleurisy for pain in back. I have it again. Stabbing..." + (show)
@woot

I’m surprised no one has mentioned pleurisy for pain in back. I have it again. Stabbing pain. Excruciating. But X-ray would show it so your docs would surely have seen it.

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My xrays show arthritis in my shoulders and back. I haven’t received my other results yet. At least I know it’s not in my head. What have you tried for the pain?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 2, 2020
In reply to @woot "I’m surprised no one has mentioned pleurisy for pain in back. I have it again. Stabbing..." + (show)
@woot

I’m surprised no one has mentioned pleurisy for pain in back. I have it again. Stabbing pain. Excruciating. But X-ray would show it so your docs would surely have seen it.

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Oh Woot, I am so sorry to hear about the pleurisy. I have had that before and I know that is no picnic. When I had it, it felt like swords being pushed through my chest. I hope you get over this very soon. Sending you healing vibes and cyber hugs.

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1 reply
woot | @woot | Oct 4, 2020
In reply to @windwalker "Oh Woot, I am so sorry to hear about the pleurisy. I have had that before..." + (show)
@windwalker

Oh Woot, I am so sorry to hear about the pleurisy. I have had that before and I know that is no picnic. When I had it, it felt like swords being pushed through my chest. I hope you get over this very soon. Sending you healing vibes and cyber hugs.

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Terri, thanks for your sympathy. It really does help when you describe exactly what pleurisy feels like. You help a lot of people on this forum.

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1 reply
judyhodgern | @judyhodgern | Oct 5, 2020

So sorry Woot about your situation with pleurisy it sounds very painful. I hope you will become comfortable soon.
For any of you on Arikayce for MAC, I wondered if anybody had this situation happened to them !! I have been on it since June and my last dose was October 1 for the Mac I have. I was so excited about it hopefully working for my lungs —-however my creatinine which Indicates how your kidneys are doing with the medicine went up to 1.53 and it’s scaring me. My mother was on dialysis for cancer and it’s not a pretty thing to have to do and I don’t want my kidneys to be hurt. My pulmonologist told me to go off of the Arikayce. I’m going to go see him in a couple of days. I think I will try to see a nephrologist also just for the fact that I want to try to get the creatinine down if that’s possible. Don’t want to be a “Debbie Downer, “but this is really scary for me lungs are one thing and then the kidneys are another major thing. If anybody has any information on Arikayce or kidneys, please let me know—-Judy

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3 replies
irene5 Irene Estes | @irene5 | Oct 5, 2020
In reply to @judyhodgern "So sorry Woot about your situation with pleurisy it sounds very painful. I hope you will..." + (show)
@judyhodgern

So sorry Woot about your situation with pleurisy it sounds very painful. I hope you will become comfortable soon.
For any of you on Arikayce for MAC, I wondered if anybody had this situation happened to them !! I have been on it since June and my last dose was October 1 for the Mac I have. I was so excited about it hopefully working for my lungs —-however my creatinine which Indicates how your kidneys are doing with the medicine went up to 1.53 and it’s scaring me. My mother was on dialysis for cancer and it’s not a pretty thing to have to do and I don’t want my kidneys to be hurt. My pulmonologist told me to go off of the Arikayce. I’m going to go see him in a couple of days. I think I will try to see a nephrologist also just for the fact that I want to try to get the creatinine down if that’s possible. Don’t want to be a “Debbie Downer, “but this is really scary for me lungs are one thing and then the kidneys are another major thing. If anybody has any information on Arikayce or kidneys, please let me know—-Judy

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@judyhodgern I am guessing you have been going for monthly BUN and Creatinine. A problem with your kidneys can be a side effect of Arikayce treatment. Your doctor is wise to tell you to stop the Arikayce. I am thinking that your kidney function will return to normal after you have been off the Arikayce for a sufficient amount of time. Seeing a nephrologist will, hopefully, put your fears to rest. Good luck! irene5

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 5, 2020
In reply to @judyhodgern "So sorry Woot about your situation with pleurisy it sounds very painful. I hope you will..." + (show)
@judyhodgern

So sorry Woot about your situation with pleurisy it sounds very painful. I hope you will become comfortable soon.
For any of you on Arikayce for MAC, I wondered if anybody had this situation happened to them !! I have been on it since June and my last dose was October 1 for the Mac I have. I was so excited about it hopefully working for my lungs —-however my creatinine which Indicates how your kidneys are doing with the medicine went up to 1.53 and it’s scaring me. My mother was on dialysis for cancer and it’s not a pretty thing to have to do and I don’t want my kidneys to be hurt. My pulmonologist told me to go off of the Arikayce. I’m going to go see him in a couple of days. I think I will try to see a nephrologist also just for the fact that I want to try to get the creatinine down if that’s possible. Don’t want to be a “Debbie Downer, “but this is really scary for me lungs are one thing and then the kidneys are another major thing. If anybody has any information on Arikayce or kidneys, please let me know—-Judy

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HI Judy - I have not been on Arikayce, but a while back another drug messed temporarily with my kidney function. After about a month off the meds, everything returned to normal. But I might at least do a virtual visit with a nephrologist - or you could ask to be retested in 2-3 weeks and decide then whether to do a consult.
Sue

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1 reply
sounder27 | @sounder27 | Oct 5, 2020
In reply to @judyhodgern "So sorry Woot about your situation with pleurisy it sounds very painful. I hope you will..." + (show)
@judyhodgern

So sorry Woot about your situation with pleurisy it sounds very painful. I hope you will become comfortable soon.
For any of you on Arikayce for MAC, I wondered if anybody had this situation happened to them !! I have been on it since June and my last dose was October 1 for the Mac I have. I was so excited about it hopefully working for my lungs —-however my creatinine which Indicates how your kidneys are doing with the medicine went up to 1.53 and it’s scaring me. My mother was on dialysis for cancer and it’s not a pretty thing to have to do and I don’t want my kidneys to be hurt. My pulmonologist told me to go off of the Arikayce. I’m going to go see him in a couple of days. I think I will try to see a nephrologist also just for the fact that I want to try to get the creatinine down if that’s possible. Don’t want to be a “Debbie Downer, “but this is really scary for me lungs are one thing and then the kidneys are another major thing. If anybody has any information on Arikayce or kidneys, please let me know—-Judy

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judyhodgern. Judy, I have been taking Arikayce for one year and no one has suggested that I get tested for kidney function!!!! Are there symptoms that I should be concerned about and what kind of tests did you have.
And thanks to Irene for your input as well. This forum is a great wealth of information for those of us dealing with MAC and other related lung issues.

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1 reply
judyhodgern | @judyhodgern | Oct 5, 2020
In reply to @irene5 "@judyhodgern I am guessing you have been going for monthly BUN and Creatinine. A problem with..." + (show)
@irene5

@judyhodgern I am guessing you have been going for monthly BUN and Creatinine. A problem with your kidneys can be a side effect of Arikayce treatment. Your doctor is wise to tell you to stop the Arikayce. I am thinking that your kidney function will return to normal after you have been off the Arikayce for a sufficient amount of time. Seeing a nephrologist will, hopefully, put your fears to rest. Good luck! irene5

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Sure hope it will be ok—very scary to me! my sister is a doctor and told me to go because the level that I have shows that I have some malfunctioning of my kidneys and I certainly don’t want that to continue —-I want to try to lower it if possible! Thank you for your sweet message of encouragement .

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irene5 Irene Estes | @irene5 | Oct 5, 2020
In reply to @sounder27 "judyhodgern. Judy, I have been taking Arikayce for one year and no one has suggested that..." + (show)
@sounder27

judyhodgern. Judy, I have been taking Arikayce for one year and no one has suggested that I get tested for kidney function!!!! Are there symptoms that I should be concerned about and what kind of tests did you have.
And thanks to Irene for your input as well. This forum is a great wealth of information for those of us dealing with MAC and other related lung issues.

Jump to this post

@sounder27 Gee whiz, I am sorry you didn’t know that- my ID doctor has me go once a month for those tests. Well the good news is that now you do know. I think you would have have had symptoms if there were a problem (diminished urine output). irene5

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1 reply
judyhodgern | @judyhodgern | Oct 5, 2020
In reply to @sueinmn "HI Judy - I have not been on Arikayce, but a while back another drug messed..." + (show)
@sueinmn

HI Judy - I have not been on Arikayce, but a while back another drug messed temporarily with my kidney function. After about a month off the meds, everything returned to normal. But I might at least do a virtual visit with a nephrologist - or you could ask to be retested in 2-3 weeks and decide then whether to do a consult.
Sue

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In the last 3 weeks my blood levels have gone from 1.28 to 1.43 and then the latest one on September 30 was 1.53— up every week

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