breathing difficulty

[kk7788]

i have just completed my 46th interferon shot, but i have developed breathing problems in the last two weeks. my doctor ordered a pulmonary function test, and i failed it miserably. he then stuck a scope down my nose and looked at my throat, but found that my throat looks fine. the next step is a cardiologist for heart testing. all of the doctors swear the interferon won't cause this, but it seems suspicious to me. has anyone else had this kind of problem? the lung specialist says he's never seen a case like this and can't figure out what is wrong. the liver doctor says it may be some strange infection from being so immune suppressed for the last 10 months, but he's never seen anything like this either. if anyone has had the same experience, i would be grateful to hear from you.
thank, kk7788

[JonnyB88]

I completed 3 weeks of daily interferon Alpha 2B, i.v. injections.  I began to have spells where I felt that I couldn't catch my breath.  My heartbeat also seemed irregular, or fluttering.  It was very hard to explain to my doc.  He had me do the pulmonary test, and also a chest xray to check for blood clots.  Nothing was wrong.  I pulled myself off of the interferon because the problem was scary to me.  Since then, the episodes of the breathing/heart problem have begun to subside, until last week (4 weeks after the last treatment).  I went to the ER, and had an EKG done, which was normal.  Now I'm scheduled to see a heart specialist.  Did you get anywhere with your problem?  I don't know what to do if the cardiologist says there's nothing wrong with me.  I know something isn't right, but I can't get any help.  

[pjpie]

I am, was, will be again, a tennis player. I used to spend at least 2 hours on the courts a day if the weather permitted , now I am One week post TX and probably couldnt drag my *** , let alone my ball machine , out to the court. But that is now, my breathing is horrible and my heart beats fast and loud if I do too much, but I am one week post TX. My birth day is March 21 first day of spring, I have promised myself I would be out on the courts and do what I can by that day. I think if you had a infection you would have other stuff like a fever or feel week, maybe, take the antibiotics , just in case , but know that this stuff takes your breath. I dont know why or how but it took mine and I think Im going to get it back slowly. I hope , I just want spring to get here. Take care and if you feel terrible , go to the emergency , you know your body , even on tx
i wish you luck
Hey I think Ill start playing the wii tennis ,

[jmjm530]

CO:  We make alot less than a NP....LOL
------------------
OK. I've just downgraded your advice rating :)

[Trinity4]

My ANC went consistently lower each week.  Lowest being around 400.  It would not rebound so I was facing dose reduction or Neup.  I had 2 very serious upper respiratory infections that required strong antibiotics so I believe Neup was necessary.  Neup comes with it's own set of side effects but I'd rather put up with those than risk more infections.  I had heaviness in my chest for 2 months and deep breaths were difficult but that has all subsided since starting Neup.  I don't think my immune system had the ability to fight off infection anymore.  
I know it sounds crazy but even with the side effects it cause, I still feel better overall than before I was taking it.  

[CoWriter]

An RN, Diabetes Educator, etc.  We make alot less than a NP....LOL

Co

[jmjm530]

The chances are if you stop at 46 weeks (versus 48 weeks) it will make no difference. In case you don't know "CO" is a NP with experience in treating HCV (I'm not nor would I look good in white tights) and I would heed her advice to give serious thought to stopping the meds now and at the same time getting an independent work up at your hospital. Problem is, hepatologists often won't link symptons to the tx drugs and outside specialists just don't understand the drugs. Hopefully, once you stop the drugs your lung capacity will come back but you still should be closely monitored, more closely IMO.

-- Jim

[CoWriter]

You mentioned on another post that you weigh 142 lbs and were taking 1200mg of Ribavirin daily...which is more than the usual dose for somebody of your weight....how bad is your anemia?  


"the pulmonary function test is in the severe to very severe range. what would you do if you were me?"
--------------------------

If my lungs were fine before treatment and now my lung function was only 20%....and I was having trouble breathing and cardiac symptoms....I would ask my doctor to call a cardiologist so they can see me today or put me in the hospital where one can see me.  Waiting until next week would be unacceptable.  But that's just me.  And I agree with Jim.  I would consider stopping the meds early.

Co

[jmjm530]

Old thought was that Neupogen should be administered instead of reducing Peg dose. New thought is that often neither a dose reduction or Neupogen is needed. You might want to print out the study (below) and  present it to your nurse. Personally, unecessarily taking a drug like Neupogen on tx is like adding insult to injury. If your NP is resistant, talk to your doctor. If your doctor is resistant, get an outside consult from a liver specialist (hepatologist). It's your body and you owe yourself to  fight for it. Neupogen is a very strong drug and should only be used when necessary.

-- Jim



In conclusion, neutropenia is frequent during treatment of hepatitis C with interferon and ribavirin, but it is not commonly associated with infections. These results suggest that patients with constitutional neutropenia probably can be treated safely and may not require dose modification. These findings support a revision of current criteria for exclusion and dose modification based on white blood cell counts in the treatment of hepatitis C.

http://www.hcvadvocate.org/hepatitis/hepC/Neutropenia.html

[lalapple]

okey dokey.  it goes down to 500-400, not 300, maybe i should talk to my PA about that one.  i'm tired to getting an extra poke every week and still feeling this way.  but i did inform my teacher of me being on tx, and he's ok with resting when i get tired.  i was just disappointed and surprise by what happened today.  i feel like i don't know my body anymore :(

[Proactive]

don't forget, ribavirin can cause shortness of breath. How are your hgb #'s?

[jmjm530]

ANC has been about 700 only when i'm on Neup every week.  if i skip a dose, it goes down, and WBC goes down fast too....and could barely stand with  my arms on the ballet bars for 1 hr and had to take breaks to drink water, and take breathers a couple of times.
--------------------------------------------------
The question is how low does it go. My ANC dropped to around 300 but bounced back up without Neupogen. My medical team is highly experienced and rarely use Neupogen in their practice. As to your stamina, maybe your expectations are too high. An hour of exercise is more than most can take on treatment. You will no doubt be back to normal fitness once you stop the drugs and give your body time to recuperate.

[sunshine585]

While on tx, I had periodic shortness of breathe. There were times, just to get out of bed and get to the bathroom, made me so short of breathe, and a pounding heart. My nurse told me this is common with tx. I was on Peg asys and Ribaviron, no Neupogen. I've been off tx 2 months and am breathing totally fine now. I wonder if you breathing probs might be tx related. I hope you're ok, and able to resolve it.

[lalapple]

hem was above 12 before tx, gradually down to a little above 10 now.  not on procrit.

ANC has been about 700 only when i'm on Neup every week.  if i skip a dose, it goes down, and WBC goes down fast too.

i took a Neup on Sunday, the last dose from my old batch that i traveled with and get some big sx from it: fever, rash, just really stuffed up brain, body aches.  so i took a tylenol and felt tons better but rash still present.  i hope it doesn't happen again with Neupogen.  i was in dance class for the first time this year and could barely stand with  my arms on the ballet bars for 1 hr and had to take breaks to drink water, and take breathers a couple of times.  it's was kinda embarrassing.  i wasn't like that in dance before tx.  i could to 5 hrs non stop back then.

[Marcia2202]

That is very interesting. Maybe that is why they don't administer nupe on tx at my hospital.

[jmjm530]

What was your pre-treatment hemoglobin and what is it now? If the difference is significant the breathing problems are probably anemia related. They also may simply be related to a reaction to the peg and/or ribavirin. As to "Neupogen", what is your ANC? Many docs prescribe Neupogen when it's not needed. If your ANC is above 300, you might want to speak to your doc about taking you off Neupogen. Study data shows no relationship between interferon-induced low ANC levels and infections. Unfortunately many doctors are unaware of the this distinction, i.e. interferon-induced, versus non-interferon related.

[lalapple]

interesting point you brought up about Neupogen, i've been on it since 1st month of tx for geno1.  now almost into 32 weeks and definitely have significant breathing problems when i stand up for too long in un-fresh, dry, humid air inside buildings esp during the winter when they turn up the heat.  i wonder if this is due to Neupogen, or anemia, or am i just that out of shape?  i would like it much better if i'm out of shape that way i can work my way up with exercise.  

[jmjm530]

all of the doctors swear the interferon won't cause this,
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Really. Maybe have them look at side effects profile of Peg, i.e. "difficulty breathing".

Hopefully, things will get better as soon as you stop the drugs, but with only what appears to be two weeks left --  consider stopping earlier depending on factors such as the severity of your breathing difficulties, your viral response and amount of liver damage. As to "Neupogen", unless your ANC is below 300, you may not even need it. If you feel uncomfortable with your med team and their decisions, you might want to consult with an outside hepatologist (liver specialist).

-- Jim

[CoWriter]

I had posted this on the other thread you started.  I'll put it here too because I want to make sure you see it.

Co



You may want to remind your doctor that Neupogen can cause difficulty breathing.  

From the medication insert.....


"Neupogen side effects
Get emergency medical help if you have any of these signs

difficulty breathing, rapid breathing or feeling short of breath"

[lalapple]

i have trouble catching up my breath sometimes esp when i stand up for too long, i don't know if it's just bc i'm out of shape since tx, but it felt like i have trouble breathing in the mall, dance class, dry hot air that's not fresh like outside air.  when this happens, i have to sit down and drink plenty of water and take a rest.  and i yawn a lot in air that's not as fresh... i guess it's a way for my body to get the CO2 out and more O2 in.  but i'm not super anemic seeing that Hemoglobin wandering around 10.5

[kk7788]

cat scan showed lungs look good. thyroid test showed normal results, though i am on synthroid. laryngoscopy (camera down throat) showed no throat damage, but the pulmonary function test showed only 20% predicted value. my heart feels tired and it beats too fast, and i feel like i am working hard to get air. it is worst when i exert myself (exertion is even when walking to the kitchen) and when i am lying down. if i am just sitting up watching tv, it's not as bad. the lung specialist said the next step is a cardiologist, but i can't even get an appt. until next week. my biggest concern is that this is an infection of some kind and time is of the essence, but all of these doctors feel like they have to consult for three days before the do anything. the pulmonary function test is in the severe to very severe range. what would you do if you were me? by the way, i have been severely nuetropenic for the entire 10 months, so i've had no immune system at all.
thank you so much for your response, i look forward to hearing from you again.
kk7788

[merryBe]

this came from rxlist.com

In all hepatitis C studies, one or more serious adverse reactions occurred in 10% of CHC monoinfected patients and in 19% of CHC/HIV patients receiving PEGASYS alone or in combination with COPEGUS. The most common serious adverse event (3% in CHC and 5% in CHC/HIV) was bacterial infection (e.g., sepsis, osteomyelitis, endocarditis, pyelonephritis, pneumonia).

3% bacterial infections is fairly high, but it's low for me, I've had at least 12 infections and I'm just one person....so don't rule this out. Often doctors hesitate to give antibiotics because they are so overprescribed....but if you are on chemo, and DON"T get them when you need them, you can be in serious trouble fairly quickly. I almost lost my hearing 2 wks ago when the doc didn't want to give me internal antibiotics for my ears....
good thing I went back and squaked before I lost it for good (as some have)...also due to the tx.

mb

[merryBe]

the operative thing to remember is immune suppression causes many issues.

you could be having an allergic reaction to a drug, or to something new in your environment, or something that has always been there, but giving you grief now.
you could also have a virus. I was advised to get a pneumonia vaccine before beginning tx. People on chemo therapies are more susceptible to this and other lung ailments.

The first question my hepatologist asked me 2 visits ago was "any new allergies".
This is because the longer tx goes on, the more chance the immune system will suffer some reaction or other.

Even a common cold can develop quickly into pneumonia in the immuno suppressed patient so you really do not want to fool around with this.

However, are you having trouble breathing all the time or just when you move?  If movement brings it on it could simply be you've lost too many red cells and need to be put on procrit.

I have read there are many lung and breathing issues while on tx drugs, and I'll try to find where I read that, but meanwhile has your doctor considered a course of antibiotics?
Not only can lungs become inflamed but many areas can get infected while on tx.
I've had the following: jaw, lymphnodes in neck, head and armpits, 5 urinary and one kidney infection, 4 ear infections, mouth sores eye sores, etc etc etc.  Everyone seems to get some sort of complications somewhere...anywhere the body is weak.

Since it's been a cold winter you could have picked up pluresy, or you could be reacting to an irritant like mold, mildew, or even excessive heat in the house can dry out the lung membranes and cause problems. Do you have fluid in your lungs? What tests have they done so far?
I would take this very seriously since pneumonia is a real concern while on tx. Do not just sit home and put up with it. You need some answers sooner rather than later.

mb

[puppiepaws]

i would just stay on top of it.. keep contact with Dr. keep up on ur blood work may GOD keep u healthy