Coughing Up Blood After Prednisone

lizlas · Oct 18, 2011

Mariah:
Did you speak with your Cf clinic or dr. today, what are they suggesting for treating blood. 
are they trying a different abx?

Caza..... Rutin has the C, but E is supposed to be good for external scars, by softening tissue and making it more supple. but I dont know if it can help internal tissue scars...

Breethe Free posted weeks ago about a herb that works well for him and his sisterto stop bad hemoptysis called ....Gotu Kola....its supposed to help strength capillaries and veins...
he had 2 embos I believe before trying it....and you could ask if your clinic uses TA transexamic acid, my clinic calls it cyklokapron....500 mg pills....that helps some people...
if you have hemoptysis from infection you want to get on abx asap....and maybe add TA with abx...

ryry11 · Oct 19, 2011

I talked to them. They are talking to the doctor tomorrow. I usually culture Pseudomonas and MSSA, I think it must be some new infection. They said they'd call me back tomorrow afternoon.
Thanks everyone!

ryry11 · Oct 19, 2011

I talked to them. They are talking to the doctor tomorrow. I usually culture Pseudomonas and MSSA, I think it must be some new infection. They said they'd call me back tomorrow afternoon.
Thanks everyone!

ryry11 · Oct 19, 2011

I talked to them. They are talking to the doctor tomorrow. I usually culture Pseudomonas and MSSA, I think it must be some new infection. They said they'd call me back tomorrow afternoon.
 Thanks everyone!

erock77 · Oct 19, 2011

Mariah, I sometimes have low clotting levels, but I don't think the vitamin K levels are that low. It seems to help though, particularly the softgel vitamins. Mine is also resulting indirectly from infection, it supposedly wore down my lung tissue over time. They tried several times treating me w/ antibiotics and I would either bleed during the course or the day they pull the IV. Weird. Either way it didn't often have a lasting effect. Physical exertion sometimes exacerbates it as well, particularly running any distance, namely across the street. It would get my heart pumping hard and I'd spring a leak. Though since exercising regularly the last 1.5 years I've bled less and can handle more exertion with rare bleeds.

Caza, I've had 6 embos in the last 12 years, 3 were in the same year. There is usually a period of time, a few months afterwards where I don't bleed at all. Then it starts lightly. My last one was 2.5 years ago, I haven't had a major bleed since then, just small and moderate bleeds, as I rate them. They also occur less frequently. That being said I know of people where one embo was all they needed. Every one is unique, and apparently I'm in a minority of serious chronic bleeders. Since it's such a recurring problem with little understanding I started tracking them. Writing each one down and any unique circumstances around that day. So some embo's have helped more than others.

Also regarding coping Caza, it has been tough at times not knowing when it'll strike. It's pretty unpredictable. And like I said through trial, error and observation I noticed certain things appear to set off the bleeding so I can avoid them. I forgot to mention alcohol, I no longer drink b/c of it. But that's a more recent change. I do my daily routine to minimize the bleeds, and then go about my day. If it happens, I go somewhere I can cough and spit and throw some cayenne pepper in my mouth. I carry the pepper around in my pocket every day just in case, like my chapstick. I'm more concerned when I've had a notable bleed recently since I'm usually more susceptible soon after. So besides knowing what to avoid there's not much more I can do. For the vast majority of time, I'm not bleeding. So there's not much sense worrying about when it'll happen if I'm doing all I can to minimize it. And I haven't had a real bad one in years. It's more of a nuisance now than anything. How bad and often are yours getting?
Regarding telling people, I've been at my job almost 2 years and only a few people know I have CF and 2 people know I'm a bleeder. And that usually started b/c they asked why I don't drink. It's all on your comfort level with certain people. The workplace is where we generally don't talk about our CF that much, if at all from what I've heard from others. But if you have friends there I think it can help to open up with what's bugging you. Maybe try to be light about it at first, if that's possible. I think if it bugs you that much you should talk to someone about it, whether it's friends, family, a therapist or your CF nurse and social worker.
Good luck both of you!

erock77 · Oct 19, 2011

Mariah, I sometimes have low clotting levels, but I don't think the vitamin K levels are that low. It seems to help though, particularly the softgel vitamins. Mine is also resulting indirectly from infection, it supposedly wore down my lung tissue over time. They tried several times treating me w/ antibiotics and I would either bleed during the course or the day they pull the IV. Weird. Either way it didn't often have a lasting effect. Physical exertion sometimes exacerbates it as well, particularly running any distance, namely across the street. It would get my heart pumping hard and I'd spring a leak. Though since exercising regularly the last 1.5 years I've bled less and can handle more exertion with rare bleeds.

Caza, I've had 6 embos in the last 12 years, 3 were in the same year. There is usually a period of time, a few months afterwards where I don't bleed at all. Then it starts lightly. My last one was 2.5 years ago, I haven't had a major bleed since then, just small and moderate bleeds, as I rate them. They also occur less frequently. That being said I know of people where one embo was all they needed. Every one is unique, and apparently I'm in a minority of serious chronic bleeders. Since it's such a recurring problem with little understanding I started tracking them. Writing each one down and any unique circumstances around that day. So some embo's have helped more than others.

Also regarding coping Caza, it has been tough at times not knowing when it'll strike. It's pretty unpredictable. And like I said through trial, error and observation I noticed certain things appear to set off the bleeding so I can avoid them. I forgot to mention alcohol, I no longer drink b/c of it. But that's a more recent change. I do my daily routine to minimize the bleeds, and then go about my day. If it happens, I go somewhere I can cough and spit and throw some cayenne pepper in my mouth. I carry the pepper around in my pocket every day just in case, like my chapstick. I'm more concerned when I've had a notable bleed recently since I'm usually more susceptible soon after. So besides knowing what to avoid there's not much more I can do. For the vast majority of time, I'm not bleeding. So there's not much sense worrying about when it'll happen if I'm doing all I can to minimize it. And I haven't had a real bad one in years. It's more of a nuisance now than anything. How bad and often are yours getting?
Regarding telling people, I've been at my job almost 2 years and only a few people know I have CF and 2 people know I'm a bleeder. And that usually started b/c they asked why I don't drink. It's all on your comfort level with certain people. The workplace is where we generally don't talk about our CF that much, if at all from what I've heard from others. But if you have friends there I think it can help to open up with what's bugging you. Maybe try to be light about it at first, if that's possible. I think if it bugs you that much you should talk to someone about it, whether it's friends, family, a therapist or your CF nurse and social worker.
Good luck both of you!

erock77 · Oct 19, 2011

Mariah, I sometimes have low clotting levels, but I don't think the vitamin K levels are that low. It seems to help though, particularly the softgel vitamins. Mine is also resulting indirectly from infection, it supposedly wore down my lung tissue over time. They tried several times treating me w/ antibiotics and I would either bleed during the course or the day they pull the IV. Weird. Either way it didn't often have a lasting effect. Physical exertion sometimes exacerbates it as well, particularly running any distance, namely across the street. It would get my heart pumping hard and I'd spring a leak. Though since exercising regularly the last 1.5 years I've bled less and can handle more exertion with rare bleeds.
 
 Caza, I've had 6 embos in the last 12 years, 3 were in the same year. There is usually a period of time, a few months afterwards where I don't bleed at all. Then it starts lightly. My last one was 2.5 years ago, I haven't had a major bleed since then, just small and moderate bleeds, as I rate them. They also occur less frequently. That being said I know of people where one embo was all they needed. Every one is unique, and apparently I'm in a minority of serious chronic bleeders. Since it's such a recurring problem with little understanding I started tracking them. Writing each one down and any unique circumstances around that day. So some embo's have helped more than others.
 
 Also regarding coping Caza, it has been tough at times not knowing when it'll strike. It's pretty unpredictable. And like I said through trial, error and observation I noticed certain things appear to set off the bleeding so I can avoid them. I forgot to mention alcohol, I no longer drink b/c of it. But that's a more recent change. I do my daily routine to minimize the bleeds, and then go about my day. If it happens, I go somewhere I can cough and spit and throw some cayenne pepper in my mouth. I carry the pepper around in my pocket every day just in case, like my chapstick. I'm more concerned when I've had a notable bleed recently since I'm usually more susceptible soon after. So besides knowing what to avoid there's not much more I can do. For the vast majority of time, I'm not bleeding. So there's not much sense worrying about when it'll happen if I'm doing all I can to minimize it. And I haven't had a real bad one in years. It's more of a nuisance now than anything. How bad and often are yours getting?
 Regarding telling people, I've been at my job almost 2 years and only a few people know I have CF and 2 people know I'm a bleeder. And that usually started b/c they asked why I don't drink. It's all on your comfort level with certain people. The workplace is where we generally don't talk about our CF that much, if at all from what I've heard from others. But if you have friends there I think it can help to open up with what's bugging you. Maybe try to be light about it at first, if that's possible. I think if it bugs you that much you should talk to someone about it, whether it's friends, family, a therapist or your CF nurse and social worker.
 Good luck both of you!

caza · Oct 19, 2011

thanks for your reply erock 77 - sounds like you are coping well and minising it as much as you can. I see to get the blood if i exert myself - like you said the running across the road - although i dont actually run my lung function is quite los - but if i try and walk far or be more active it seems to happen - not straight away necessarily but eventually - makes me feel i cant do that much although i do do a fair bit but usually going by car and not walking that far. I think it is the scarring from my upper lobe cavity which apparently collapsed down - and i think that this pulls on the scarring when i do more and leaks. Dont really know how to stop that when we should do stuff and exercise but am more scared of getting the blood. I havent had the embo yet - but am thinking that maybe should enquire when next appointment. I am on meds at the moment for staph aureus. I think of all the symptoms of bronchiectasus and cf this is the most upsetting and it doesnt seem to matter how many times you have had it it still is frightening to me at least. Stops me getting on with my life sometimes cos i think what is the point - but then again i have to be firm with myself. Thanks lizlas - i will definitely get that herb - if anything can help i will try it.

caza · Oct 19, 2011

thanks for your reply erock 77 - sounds like you are coping well and minising it as much as you can. I see to get the blood if i exert myself - like you said the running across the road - although i dont actually run my lung function is quite los - but if i try and walk far or be more active it seems to happen - not straight away necessarily but eventually - makes me feel i cant do that much although i do do a fair bit but usually going by car and not walking that far. I think it is the scarring from my upper lobe cavity which apparently collapsed down - and i think that this pulls on the scarring when i do more and leaks. Dont really know how to stop that when we should do stuff and exercise but am more scared of getting the blood. I havent had the embo yet - but am thinking that maybe should enquire when next appointment. I am on meds at the moment for staph aureus. I think of all the symptoms of bronchiectasus and cf this is the most upsetting and it doesnt seem to matter how many times you have had it it still is frightening to me at least. Stops me getting on with my life sometimes cos i think what is the point - but then again i have to be firm with myself. Thanks lizlas - i will definitely get that herb - if anything can help i will try it.

caza · Oct 19, 2011

thanks for your reply erock 77 - sounds like you are coping well and minising it as much as you can. I see to get the blood if i exert myself - like you said the running across the road - although i dont actually run my lung function is quite los - but if i try and walk far or be more active it seems to happen - not straight away necessarily but eventually - makes me feel i cant do that much although i do do a fair bit but usually going by car and not walking that far. I think it is the scarring from my upper lobe cavity which apparently collapsed down - and i think that this pulls on the scarring when i do more and leaks. Dont really know how to stop that when we should do stuff and exercise but am more scared of getting the blood. I havent had the embo yet - but am thinking that maybe should enquire when next appointment. I am on meds at the moment for staph aureus. I think of all the symptoms of bronchiectasus and cf this is the most upsetting and it doesnt seem to matter how many times you have had it it still is frightening to me at least. Stops me getting on with my life sometimes cos i think what is the point - but then again i have to be firm with myself. Thanks lizlas - i will definitely get that herb - if anything can help i will try it.

Coughing Up Blood After Prednisone

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