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Avatar universal

Can't breathe or crawl out of drug fog...help

I am usually not one to share, but I have been reading the forum and finally joined. I had been seeing a internist for a few years because I felt weak, sickly and had pain in my side. He checked everything from parathyroid to pancreas, found nothing gave me Vicadin for my pain continued to take blood and see me once a month .  A year and a half ago a blood test came back that said I had active Hep C. I didn't think anything about it because I had it at 17; but that was Hep B not C!?.  A year later another test came back and I saw and there were asterisks all around the Hep C portion of the blood test. The doctor still did nothing to pursue it.  Luckily, I changed insurance companies and visited a neurologist for the pain in my back and mentioned my concern about the blood test I had seen 6 months before.  He said time to start at square 1 with a new family doctor, gastro...etc. Well a month later after visits to new doctors, taking blood tests, and having a liver biopsy I was diagnosed with Chronic Hep C 1b genotype and told I needed therapy for a year!!  That was in May and I still feel like a deer in headlights.  I take my 10th injection tonight and it has been hell from the start.  About 5 hours after my first injection it felt like a wrestler had taken me and thrown me against a brick wall and passed flu into me while doing it.  The fever portion of the sx has diminished, but the hot flashes haven't. By week 3 I had a lovely rash on my arms that itched like crazy twice a day when the ribavirin wave hit, the inside of my mouth was so tender it hurt to swallow and my brain was in a a fog for 2 days after the injection.    At my week four results appointment I was miserable, but had told my kids I would get through the 12 weeks time frame to see if the therapy was working and the nurse practioner handling my case gave me a rally boost to hang on.  Note to readers not taking therapy yet or others to start if you live in Texas - don't start the therapy in the summer in case you react bad to the therapy!! The heat has aggravated this entire situation so that I can't function unless in cold air. The past two weeks have been absolutely awful..like an extended LSD trip that I can't wake up from and the pressure on my chest has been nonstop so that I can't breathe.  I am functioning at a very limited capacity because I can't walk ten feet without looking for the closest place to sit down.  I hate that I have a horse in my backyard that I haven't seen in 2 weeks and should probably give her away for her benefit,  that I feel like a burden to my son because he is the one that is stuck living with me, that I feel guilty for him having to watch me be so helpless and pissed off at the same time because he won't pull the weeds so the damn gate will open, but most of all I hate that my brain has seemed to taken an extended vacation and I am afraid that it won't come back.
I sat down with the son that lives with me yesterday before I was leaving for my 2 month test results at the doctor and told him that I couldn't do this anymore..that I would rather die younger than hurt and be metally confused like this for ten more months.  I told him that I would see what the doctor said and would make my final decision after that.  Well, I met my older son at the appt., but he has not been aware of just how bad I had spiraled into hell so it was a shock to him. And for the test results and diagnosis....at 8 weeks my numbers have gone from 2-3 million to 49 which is the number we want after 48 weeks of therapy and my percent rate of beating this is now 80% instead of 25. Yes I am suffering, but if I quit therapy now, in a few months the numbers will jump back up and the past two months will be wasted. To try to make my life easier, the ribavirin dosage is being lowered to 1000 a day and I am to try to take Xanex to see if it helps relax my chest so I can breathe and function better.  My eldest son is going to step in and try and figure out ways to ease some of my concerns and hopefully that will make me rest easier at night. This constant state of fog is seriously affecting my job and  I am driving on the road while in this state and putting other people lives in jeopardy and that is not acceptable at all. Well, I have rambled...or vented!  
My questions are: Has anyone out there had these symptoms and did they ever subside? Will lowering the ribavirin dose help and how long does it take to notice any difference since it has been in my system for so many weeks? I took a Xanex at dinner last night and woke up drooling with Project Runway blasting on the TV..I only took a half a pill today, have stayed awake so far, but the pressure in my chest is still there...does anybody know if the pills will actually ease the tightness in my chest so I can relax ??? How can I shake the drug fog I am in?  I am afraid my brain is being permanently damaged and would rather lose my liver than my thoughts and I really don't make a very attactive paperweight.  Any thoughts, cures or suggestion??  
15 Responses
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476246 tn?1418870914
I totally feel you. I myself was bedridden throughout treatment. This thing is a bizznitch, but you will be so glad you did it, once you get your SVR. You are a great candidate having cleared at 8 weeks.

Take a day at a time. Don't think about how treatment will be tomorrow and don't look back on what you have gone through. It will help you stay more focused.

There will come the time that you feel better. As the others said, ask your doctor for Procrit, if your hemoglobin is lower than 10. I know many that it helped tremendously.

Wishing you all the best. We're all rooting for you!!!
Helpful - 0
548668 tn?1394187222
You Go Girl!  Take it easy when you get dizzy - lie flat on your back if necessary and drink some water until you're okay.  You're doing it hard and I'm so glad your family are recognizing it.  

It really is a long haul;  I know that sitting on the pc nightly researching this site kept me sane and also kept me better informed.   Some of the medical profession are a little ignorant of some of the side effects, so make sure you really push the point when you're doing it so hard.  And glad to hear you're resting and taking it easy.  Thanks for the update; will look forward to hearing your progress...
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1051313 tn?1284780795
I think one of the best things to do, and I think you are figuring this out, is to try to just submit to the treatment.  I tried to fight it too.  I thought I could feel like crap and just plug along, maybe cut back a little and keep going on like that for 48 weeks.  Well, I guess like all of us you have figured out that it doesn't really work like that.
I think a little peace of mind comes when you get to that place where you realize that for now my life is pretty much laying down, sleeping and eating. But also you realize that not every moment of every day of treatment is crap. Carpe Diem!  Those are the times we can "get something done". Or not.
It is really important too that the people around you understand the facts as to your treatment as much as possible. Your kids will survive this with you. They can be pretty resilient.  I remember one Saturday (my worst day) I decided to stumble out of bed, I was feeling like a lazy mom, and tried to do something.  Next thing I was in tears and my husband as leading me back to bed (not the way I would have liked in the past ;) and my teenage daughter just looked at me and groaned, "oh gosh just go lay down!"
I finished my treatment this March and I am SVR--cured. I had this virus for 18 years I knew about.
The treatment days are long behind me now.  I feel great, my energy is terrific, I have my brain back and I am really healthy. Of course my house is still in recovery mode, I am still purging and cleaning from all that didn't really get done while I am on treatment.  But you know what?  NO ONE cares about that. Every now and then my kids will remember something about how messed up I was while on treatment and we all have a good laugh. Although my "I am on interferon" excuse has lost all it's validity by now. Now I am  accountable.
You WILL make it through this, we all did. It's a long haul, but you get there one day at a time. Then soon you will be looking back and encouraging someone else to keep going.  
Have a great day.
Vicky
Helpful - 0
Avatar universal
Thank you all so much for the support, it really is encouraging because I know that you have either been through the tx or are now going through it with me...just on your own schedule.

To Kristina538...I love the comment about the gate not opening and having everyone climb over :0)  It is good the fence is low and the kids are tall...lol

Saturday was a rally day for Mom.  My eldest son (the ultimate task master) and his wife showed up with brunch, bags of cleaning products, vacumm, tool chest and greased elbows ready to work. Jobs were delegated and they and my younger son started a cleaning frenzy. At first, It was weird and embarrassing to have them there because of all of the cat and dog hair - egads, I have 6 cats and a large dog and vacuuming is not something that can be put off long - but since I had taken my shot Friday night and am already so blitzed by the tx with a llittle prodding and insistence I crawled into bed and let them go to it. I finally loosened up (or just got so zoned out enough!) and decided if they dug up any dirty secrets while cleaning they wouldn't go far with them since they are my FAMILY...whew.  It ended up not being so bad to relinquish my duties, the house is clean and my mind is more at ease...maybe if we get the front gate to open I can just get a maid service to visit once a week!!???
Yesterday, I ventured out and fed my horse...of course immediatedly after dumping the food, the bucket hit the ground upside down with my *** on top of it!  Needless to say, the dizziness and lack of energy is a ***** but I sat out there catching my breath, rubbed my horse and sweet talked her and even tossed the ball for the dog  while the time passed enough for me to venture onward.  Hell, they didn't know I felt like death and them enjoying that little time with mom made the effort rewarding for me...I did remember halfway back to the house that I did not take my mobile phone with me!!!!???? Next time some planning and notification to my son that I will be wandering will be the smart way to go.
This morning I feel better than I have in 2 1/2 weeks.  It was still a struggle to hobble out to my car with the dizziness and weakness, but the tightness in my chest has eased some and the mental fog has cleared a bit so there is hope. With the support of all of you and my family I am going to see this through.  I will be sure and ask my doctor about a prescription for the Procrit  because it sounds like that is what I need to feel better.  The blood tests results always run earlier than the dr visit, so my HGB level may be lower than the test suggests.  I will use that angle since I don't have blood taken again for a few more weeks. I will also relay all of your suggestions to the doc since you have can wear the "Been there done that and have the T-Shirt" for surviving this test of life and have good info to share.
Thanks again to all that responded.  As I said, I am not one to share and have not talked to any friends about this so this forum has helped me feel less alone in dealing with this disease.  I will continue to visit and today I send a hug out to all of you.      


    
Helpful - 0
548668 tn?1394187222
You're doing just FANTASTIC.   I know you aren't feeling like celebrating but take it one hour at a time.

Get some non-alchoholic mouthwash for the ulcers (Biotene), and a ph balanced soap alternative for showering and washing your hands (cetaphil).   Drink lots of water and snack a lot.  If you're really not hungry have a tylenol and force yourself.  

AND if the weeds stop the gate from opening, everyone will have to climb over it... don't stress the small stuff or try to keep up appearances;  this is your life and you're doing FANTASTIC.

My 17 year old son grew up while I did tx.  I was so nasty to him, and so mentally emotionally up and down that I would have a serious talk which would destroy him, then I'd cry and apologise.  After doing that twice, I told him that it was the meds, and no longer tried to have heart to hearts with him.  I had to trust him to manage, and I had to shut my mouth and look after my life - step by precious step.   It's a very hard time, but we got through it.    I'm so glad your older son is stepping in.

The ribaviron is 'accummulative';  if you've reduced it may take a week - 10 days, or you may notice a difference sooner depending on how much you've absorbed.  I counted by 'full moons' and took each hour as it came.   Treat yourself like a patient with a very bad illness, and allow yourself to just do what you can.... I did so much sitting on the deck, I became a bird watcher.   Your 'normal' life can wait;  you will recoup and recover.  Just be as kind to yourself as you possibly can.

I can't congratulate you enough for having come so far, and your son deserves a big pat on the back too;  I'm sure neither of you expected it to be like this, but it is major, as major as chemo.   <49 is the limitation of the test;  (I had <15 and my specialist said it was 'as good as' undetectable).   Demand assistance for every little side effect;  I was my local chemist's best customer.    I hope you get some relief from the reduced riba soon, and some help in managing the other sx's.    You really took me back and my heart goes out to you and your boys.   Much love n hugs.
Helpful - 0
Avatar universal
Hey fellow Texas gal,

I finished tx 19 months ago and was just as miserable as you are.  But I say don't quit!  You'll have to relive the past 9 weeks all over again.  Every day you hang in there brings you one day closer to your goal.  

For now, do anything you can to relieve your misery.  Lay in bed, eat ice cream, get massages.   Do you have any vicodin?  If so, send it to me -- just kidding  :)  Seriously, I'm not advocating reckless drug use but some means are justified to reach the end.

The good news is this one year of your life will be but a vague memory and hopefully you'll be SVR forever!  Write more often and share your misery with us.

Best regards,

KF

  
Helpful - 0
Avatar universal
I guess after so many years of knowing exactly how others feel, empathizing with their pain and trying to help them to the finish line it's just easier to say hang in there.  There were times I didn't think I was going to make it either and if it wasn't for a few dear friends I'm not sure I could have kept going.  Treatment is hellish and sometimes we have to dig deep within ourselves in order to persevere.  Miserable is showing a good response to treatment and I think with some extra help in the side effects department and some real determination to get to the end she'll make it.  Lord knows I wish everyone a favorable outcome and it's a grand thing when you treat one time, endure the hardship and the reward is SVR.

Trin
Helpful - 0
1398729 tn?1280589319
Brain fog: my 1 log drop was at 4 weeks and 3 log at 7.
Helpful - 0
1398729 tn?1280589319
Hi, my Hgb levels are in the normal range (just) but I have the same symptoms. My consultant tells me' it is haemolytic anemia as I started withstrong Hgb levels and have had a 5g drop to 11.6.  I've stuck with 1,200 mg ribavirin till now, just starting week 12. I just got told I had a 3 log drop at week 7; my tests are a bit out of sync. This has encouraged me' to stick with it, although it is painful.

I have started taking Eprex today and I'm hoping to get some improvement. I'm in the UK and I think it may be easier to get this treatment here as the FDA haven't approved it for Hep C in the US.

Anyway please don't quit.

I'm on week 12 with genotype 3a, but am male, over 40, likely cirrhotic and had a high viral load, so my chances were rated at 50%. I have the same side effects which are reducing me to a crying wreck on a regular basis. I'm still on 1200 mg and have hidden the extent of my problems from the docs.

I was told I had only a 1 log drop at 8 weeks and that I may require 72 weeks of treatment. Very depressing. However in the UK they will prescribe EPO (eprex/epogen) for anemia which I understand is not approved in the US.
I would advise you to try to get this however as I understand how debilitating the anemia is.

I got my latest test result today and I have achieved a 3 log drop. I put this down to maintaining the high dose ribavirin. Please try to stick it out; my greatest fear is that I will have even tried to do this and either fail to stay the course or have to compromise the duration or dosage. Please try to stay strong.

All the best with your next set of results and for SVR!
Helpful - 0
148588 tn?1465778809
Sorry, didn't mean to say you sounded trite It's something I use too often.
Helpful - 0
148588 tn?1465778809
"Has anyone out there had these symptoms and did they ever subside?"
  

"About 5 hours after my first injection  it felt like a wrestler had taken me and thrown me against a brick wall and passed flu into me while doing it."
I'm guessing you're on Peg-Intron rather than Pegasys. Some weeks were better than others for me.

"The past two weeks have been absolutely awful..like an extended LSD trip..."
Um, yeah. I found that an opioid like hydrocodone works pretty well in 'closing the doors of perception', but if you have substance abuse issues, the cure can be worse than the problem.

"...if you live in Texas - don't start the therapy in the summer..."
I hear you. I chose to start in Oct.

"To try to make my life easier, the ribavirin dosage is being lowered to 1000 a day" " All of the other test results were in good ranges...so no anemia."
I chose to dose reduce riba at week 19 even though my blood values were good. Gave me a psychological boost more than anything.


I had geno 3 so my experience with quitting early doesn't really apply to you. You didn't start with a low viral load and your first UND at week 8 means the geno 1 quitting early stats aren't really meaningful. Still, UND at week 8 is hopeful and if it were me and it became totally unbearable at week 36 I might be tempted to quit and still feel like I had a chance.

I would definitely have the Hgb checked at more often than monthly intervals if your getting that tired.
'Hang in there' sounds trite, but I'll be saying a prayer and holding a good thought for you.



Helpful - 0
Avatar universal
People here who had severe anemia during tx can totally relate to the challenge of walking ten steps and wanting to sit down. Make sure you tell your doc about the pressure in your chest. Don't overlook this like I did.

How much riba are you taking per kilo?

I also had days I wanted to quit and just tried to go one more day and then another and then another and my 48 weeks was done.

You are taking a big hit with the meds but are responsive to them, so I hope you can see your way clear to sticking it out.

Some don't get hit that hard and some do but if you're one who does, you need to focus on rounding up all the ammunition you can to tackle your sides, one at a time, keep your chin up and stay determined to survive this thing rather than be stuck with the virus down the road.

The strange thing about this long treatment, I kid you not, is that you get accustomed to the strange world of feeling c-rappy. (Some people don't ever feel that crappy, lucky guys.)  After a few months, you can't remember 'normal', you adapt every which way and drag yourself onward and over the finish line. And then the sun shines and you can barely remember that h ellhole.

So many of us have been where you are now and just kept at it, a little at a time, hanging in and on.

The thing about the fog is you forget how bad you felt the day before and tackle the new day.

Mantra: Don't count the days ahead, just be here now.

Try Benadryl for the itch.

Try Tylenol for any aches or pains, not more than your doc recommends.

Monitor you blood pressure and heart rate. Low hemoglobin can cause serious problems in the breathing department. Some report lower or higher pressure than normal.  

Do you know what your last BP and pulse readings are? (Some people successfully take betablockers to slow down a pounding and racing heart, where indicated.)

Ask the doc how and when he intends to intervene for low hemoglobin, if necessary, other than riba reduction.

Buy Biotene products (use sparingly, as it's expensive and a little is as good as a lot as long as you swish for the recommended time) or some such for your oral hygiene and sip water to offset the lack of saliva from the meds that make things rough going in the mouth.

Your brain will come back, so DON"T back away now with those great results but DO get your horse well-looked, either by a friend or neighbor. Trudge on, a step at a time, for your sake and your boys.

Best wishes and hope to hear from you again,

Susan

P.S. I had cardiac problems during treatment and brain fog that was impressive for how much I failed the basics.  Post-tx, my heart rate is perfect and my memory is back better than ever.




Helpful - 0
Avatar universal
It does sound like you are suffering from hemolytic anemia.  Definitely ask your doctor what your hgb level is.  As nygirl mentioned, your doctor can prescribe Procit (Epogen) for the anemia.  It takes several weeks for Procrit to raise the hgb level but once it kicks in you will notice a significant difference in the way you feel.  Your energy level should increase, the heavy feeling in your chest should subside and breathing will be much easier when you exert yourself.  Your doctor can also prescribe Atarax for itching which also helps with anxiety and sleep. You may need a topical steroid cream for the rash if it becomes severe.
The first twelve weeks of treatment can be very difficult while the body is trying to adjust to the drugs.  With time many of us level out and start to feel better.  I know how hard it is but eventually all this will be nothing more than a bad memory.  Your comfort zone is not going to be same as before treatment but there are helper drugs that can make things more tolerable so make sure you discuss what you are experiencing with your doctor.  
Don't quit treatment, you've come this far and an unpleasant 48 wks is a very short period of time to attain SVR which will ensure a lifetime of good liver health and no more weak, sickly, pain in the side troubles.  

Hang in there, you can do this.
Trinity  
Helpful - 0
Avatar universal
The HCV RT-PCR Quant is 49 which means it is undetectable I was told, that is why the encouragement to continue.  All of the other test results were in good ranges...so no anemia.  
Helpful - 0
179856 tn?1333547362
pressure on my chest has been nonstop so that I can't breathe.

Check on what your HGB (hemoglobin) number is......hemolytic anemia is a side effect that many of us have to deal with and certainly it sounds like what you are experiencing regarding not breathing well and being SO extremely tired.  Most people do not react this badly to the drugs at all if this is not involved.  Also see if your doctor will prescribe an antidepressent it might help you with the obvious depression you are experiencing from all of it! (many of us took them on treatment).

There are things you can do to help with the side effects (ie: Procrit if your hemoglobin has dropped too far, lotions for the lovely rash that we can get).

But try and hang in there.  It's not fun but it certainly shouldn't be this bad.  I treated for 72 weeks and had horrendous anemia and sides but even I felt better than this.  PS I have been cured over 3 years so it can work.

"49 which is the number we want "

I dont know what you mean by this the number you REALLY want is UNDETECTIBLE although you are well on the way there which is great news.
Helpful - 0
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