Anyone else experience stiff and weak muscles while on the medications

Posted by legacygsh1 @legacygsh1, Aug 30 11:01pm

I've been on Azithromycin, and Ethambutol for 15 months, and Clofazimine, and inhaled Amikacin were added 5 months ago for my Bronchiectasis and MAC cavity disease. I find I am moving so much slower, having weakness in legs, and feeling unsteady and unsure of myself when on my feet. Does anyone else experience this?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

I am have been various inhalers for asthma + Bronchiectasis over the last 6 mo. - most recently a Trimbow inhaler which has different components (beclometasone dipropionate 100 mcg + fomoterol fumarate dihydrate 6 mcg +glycopyrronim bromide 12.5 mcg) but I have felt the same symptoms + aches in my shoulders + more searching for words and a feeling of general mental fog. I am not sure if this is a result of the steroids I am taking for my asthma or simply I am getting older (76).

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@legacygsh1 I had the same experience while on meds. My primary pointed out that a chronic infection alone is enough to cause this, then add the rigors of multiple meds and their side effects plus challenged lungs. Her advice- keep moving, several times every day, no matter how slowly and rest as needed. My walks went from miles to mere yards, but once off the meds my stamina gradually increased. Oh, and EAT even when it doesn't appeal, especially protein

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I have had muscle wasting due to (Big 3 mac treatment) weight loss which doesn't help the stamina needed to maintain strength and physical activity. Like you, I'm not as steady on my feet. Maybe this isn't your issue, but weight loss was a topic at my last ID Doctor appt, as BMI is under 19. Doc said to concentrate eating high density, high caloric food, as much as you can. Hoping to gain some muscle back eventually. I normally do two walks a day to try to maintain my strength, each walk only about a mile.

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Muscle strength and flexibility def compromised and systemic achiness - I can barely go down to tie my shoes at times. Complicating it for me is that I relied on ibuprofen for joint issues but now cautioned against that due to liver load. I'm hoping continued activity keeps joint issues from becoming permanent. Have used topical NSAID with some success.

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I lost over 20 lbs along with all my muscle in arms snd legs. I was very active with hiking and elevation, biking, kayaking etc. Got a bad flu in January and everything went down hill from there. I am seeing a physiotherapist now for hip, groin, knee and back pain. I also developed plantar facia just to add to the mix so yes have experience major muscle and weight loss. It’s enough when we are dealing with lung issues but now pain in body.
I am on two inhalers and shortly to be on cyprofloxen and tobramcyn so will see what it does to me then. I try hard to keep moving even 2 or 3 short walks a day and lots of stretching exercises

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@legacygsh1 Yes, like you I am on Azithromycin, Ethambutol, Clofazimine & Arikayce for cavitary MAC. We dropped Rifampin when I started Clofazimine. I have been on these meds for over 2 years and the last 4 weeks or so I started having similar issues, weakness in my legs, soreness in my legs and arms and pain in my lungs and shoulders. I am also experiencing awful fatigue and increased SOB. I am not exercising like I was because of this. This is disappointing as I was doing pretty good on all these drugs for quite awhile.

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Profile picture for Liz @ursala7

I have had muscle wasting due to (Big 3 mac treatment) weight loss which doesn't help the stamina needed to maintain strength and physical activity. Like you, I'm not as steady on my feet. Maybe this isn't your issue, but weight loss was a topic at my last ID Doctor appt, as BMI is under 19. Doc said to concentrate eating high density, high caloric food, as much as you can. Hoping to gain some muscle back eventually. I normally do two walks a day to try to maintain my strength, each walk only about a mile.

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@ursala7 I’m in a similar situation as you. My weight loss/muscle loss started right after finishing the big three. I try to stay moderately active to avoid further muscle loss and help my lungs along with eating small meals and snacks throughout the day. I’ve done various workups but the only advice I’ve gotten from my drs is to add protein shakes or ensure. I did watch the zoom from Michelle McDonald discussing protein supplement which was very beneficial but am wondering about the correlation between the big 3 and post treatment muscle loss.

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For all those experiencing muscle loss, joint pain etc. etc.
Have you had your Vitamin D tested recently?
What are the levels of your magnesium and potassium etc.?
Has a doctor ever tested you with those in mind?
Sometimes we have to insist for certain things. I would rather they error on the side of caution, especially for something as easy as these types of tests would be.

Due to my experiences I am mentioning this as food for thought.

We are all chemicals and medications that we take to help one thing can destroy and cause problems in other areas.
Barbara

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Profile picture for Mary @mjb24

@legacygsh1 Yes, like you I am on Azithromycin, Ethambutol, Clofazimine & Arikayce for cavitary MAC. We dropped Rifampin when I started Clofazimine. I have been on these meds for over 2 years and the last 4 weeks or so I started having similar issues, weakness in my legs, soreness in my legs and arms and pain in my lungs and shoulders. I am also experiencing awful fatigue and increased SOB. I am not exercising like I was because of this. This is disappointing as I was doing pretty good on all these drugs for quite awhile.

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@mjb24 @legacygsh1 I am just about to finish treatment for my cavitary MAC infection - 13 months on Big 3 with Arikayce (though had to stop Arikayce in July due to ototoxicity concerns). About a month ago my shoulder started bothering me. A lot of pain, especially with internal and external rotation. I raised with my ID doctor and she thought unrelated to treatment, something mechanical. I am scheduled to see a PT soon. But these recent posts are interesting to me as I too have been exercising less robustly due to significant fatigue from the drugs. Maybe it is the de-conditioning that can come with treatment that plays a part. My ID doctor commented that the joint and muscle pain that is associated with the antibiotics in her experience is more generalized. But certainly, what you both are describing seems more "generalized" then my shoulder pain so I think it is worth checking in with your care team and seeing what they think about a possible connection. I finish treatment in 9 days so I will certainly respond further if I notice a sharp improvement with my shoulder pain after drug cessation.

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Profile picture for bayarea58 @bayarea58

@mjb24 @legacygsh1 I am just about to finish treatment for my cavitary MAC infection - 13 months on Big 3 with Arikayce (though had to stop Arikayce in July due to ototoxicity concerns). About a month ago my shoulder started bothering me. A lot of pain, especially with internal and external rotation. I raised with my ID doctor and she thought unrelated to treatment, something mechanical. I am scheduled to see a PT soon. But these recent posts are interesting to me as I too have been exercising less robustly due to significant fatigue from the drugs. Maybe it is the de-conditioning that can come with treatment that plays a part. My ID doctor commented that the joint and muscle pain that is associated with the antibiotics in her experience is more generalized. But certainly, what you both are describing seems more "generalized" then my shoulder pain so I think it is worth checking in with your care team and seeing what they think about a possible connection. I finish treatment in 9 days so I will certainly respond further if I notice a sharp improvement with my shoulder pain after drug cessation.

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@bayarea58 Congratulations on finishing treatment! 😀. I believe I read that your cavity closed, which is great since they tend to harbor the bacteria and make it more likely to return. I appreciate that you will update us if you notice improvement in your shoulder pain after treatment. Prayers for your future.

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