Hep C Discussion Forum

dustbear · Senior Member

RE: My treatment has been stopped for a couple of days.

mallani · Guru

Hi Julie,

Good to hear you're on the mend. Be patient, it will take a while for your body to recover.

Your blood cells are still being affected by Ribavirin. Your RBC's will gradually increase and the MCV and MCH will come down. Also, the neutrophils will increase. It's still early days, so don't worry.

Your lipid profile is OK, except for the low HDL cholesterol. In time, you will have to try and increase these, by diet and exercise. As you say, sitting around and eating junk food will certainly affect these. It's not urgent, so relax and wait.

I don't understand why your CPK is not fractionated. Sure, the total level is high, but how can you decide on skeletal muscle without knowing the CPK-3 fraction. I would avoid a muscle biopsy for at least 6 months, to see if the levels settle.

Lastly, avoid ibuprofen and all the NSAIDs. These can be bad for kidneys and liver, and at this stage, it's best not to complicate matters. Also, I wouldn't let them give me statins to control cholesterol.

You will gradually improve, so don't get concerned about cryoglobulins. Just make sure your thyroid profile is OK. You'll be fine, but it may take several months. Cheers.

Cinnamon Girl · Guru

Hi Julie, good to hear from you again and I`m so glad things are improving for you. I`m not really able to answer your questions but maybe Malcolm will comment when he`s next around.

It must be so frustrating for you coping with the shortness of breath and ongoing pain and stiffness, but it`s still very early days yet, and it`s great that you`re heading in the right direction. Once you start feeling a lot better you`ll soon get back to your normal diet and exercise routine I`m sure, but for now the best thing you can do is take it one day at a time and let yourself heal and recover.

Keep doing your stretches and short walks when you`re able to, and treat yourself kindly while you recuperate.

Wishing you all the best, keep us updated! smile

ucbgal · Senior Member

julie,

was thinking about you the other day. can't really help you w/ the technical stuff but am pleased to learn you're not on oxygen. also you're still und & your rbcells are getting there & the nuetros are creeping up!!!! how is your hemoglobin?

might you want to ask dr. for a nebulizer for shortness of breath? you must be tickled pink to walk down your driveway!!!!! i'll bet in a month you'll be taking walks in your neighborhood. i know all of us are impatient at eot but we need to grin & bear it for the svr on the way.

funny you mentioned bp & cholestoral. lately my bp has been elevated since eot. also for 1 month on inciveck i had elevated cholesterol as well. it became stabilized w/ choosing my 60 grams of fat wisely.

treat yourself well .

sandy,ucbgal

dustbear · Senior Member

Here's an update and I need some help if possible from you guys!

Lungs: I passed the PFT, within range. It's based on a formula and it was the only test I got. The shortness of breath is gone at a rest but I'm not exercising (see below) so I don't fully know. I don't need oxygen anymore. It's hard to describe but it is difficult to yawn and take in all that air, so I pant-yawn. It feels restricted to inhale lots of air. Also, my lungs involuntarily gasp for air. It feels like my breathing is skipping a beat. It used to happen every 15 minutes. It is less frequent but happens daily. It can happen when I speak or just sit and do nothing at all.

Myositis: CKP Enzymes are still elevated at 1518 (should be <140). Mallani, they are not fractionated anymore, so it's a total of the 3. I am going to see a rheumatologist for a muscle biopsy. I am not allowed to exercise (mild stretching is ok), walk past my driveway, or take any pain killers! The pain, weakness and stiffness will not go away, and it is worse now that I'm not taking ibuprofen for the swelling. It's been 2 months since EOT, so maybe I need more time. Biopsy won't happen overnight, and I'm hoping I don't have to take any steroids (like Prednisone) as I've had enough of drugs for a while! Also, cryoglobulins test results haven't come in. He's worried there is too much protein in my blood, and the condition of my kidneys.

Blood tests are almost normal except for:

RBC 3.37 (3.5-5 is the range)

MCV 110 (80-100)

MCH 36.8 (27-34)

Neutrophils 1.6 (2-8)

Lastly, my cholesterol was tested before treatment, 3 months before EOT, and last week. I have no history of cholesterol problems; the first 2 tests were perfectly normal, but not the last.

The results are:

Cholesterol 91.8 mg/dl

LDL 57.6

HDL 14.4 (low)

Triglycerides 43.56

Risk Ratio 114.8 (high)

Keep in mind, my heart was compensating for the lung problem. Triponin was elevated and I developed Pericardial Effusion (fluid around the heart). I passed the MIBI and Echo tests. Finally, my blood pressure has returned to normal after 2-3 months at 118/60. I was eating a lot of fat during tx and have been lazy to get back to a healthier diet. I eat too many carbs! I read a bit about low HDL in regards to the liver and blood. My question is can cholesterol levels change that drastically within a 3 month time frame? I am not a diabetic, and don't fall into the metabolic syndrome category. So is it just the fact that I have not exercised for a year and ate a lot of fat during tx? Is this just another blip in the roadmap of recovery? Is this common to this tx?

Thank you, and I hope you are all doing well. My mind says go, but my body says no!

hrsetrdr · Guru

Dustybear,

I've been meaning to catch up to this thread and comment; I must say- you are a real "trooper" to have been through all these complications and still be able to smile about it. I wish you the best for 2014- I think that you're right...14 will be your number!

Matt Chris · Guru

Hey Dustbear

So happy to hear your words of encouragement again, it's been quite a ride on your treatment wagon.

I really appreciated the words you wrote at the end of your long post

" The doctor asked me if I was a medical student! I laughed and said no, just very inquisitive so I can ask the right questions. One thing I learned is to ask questions, and question everything."

Your taking responsibility for your health saved your life, a lesson that we all should take notice of.

Hoping for a speedy recovery for you.

matt

mallani · Guru

Hi dustbear,

Interstitial pneumonitis is uncommon but it fits the bill in your case. It is unclear whether the multiorgan problems are due to a direct effect of Interferon, or whether this is an autoimmune manifestation. A HRCT (High Resolution CT) of the lungs will tell if the pneumonitis is resolving, and you may need a course of steroids to help it along. I'm sure your docs will look after you. Be patient as it may take a while for the myositis to resolve. I'm sure your lungs will recover with minimal (if any ) scarring.

Shortness of breath should be a warning flag for patients on Interferon. Although the Riba anaemia can cause SOB, this is not at rest.

As you said, 2014 will be a stellar year for you. Cheers.

dustbear · Senior Member

14 is my lucky number, so 2014 will be a stellar year!

I have kept a log and plan to continue it. I lost track of the days and covered my clock. It is hard to remember the details so writing is a must, esp with the brain fog.

I am positive my lungs will recover. The minor scarring is permanent. I am going for a pulmonary function test Jan 8.

Oh my goodness, let me say I am so honoured to receive the award Tig! I can't believe the news about your stepdad and the neck part worries me the most. I just have to give it some time before I start asking more questions. I just had blood work done so I will know more soon.

Mallani, is this rare or what? I did read in the pegasus pamphlet that myositis is a possible sx. I think it was caught early enough. Thank you for the link!

-- Edited by dustbear on Monday 23rd of December 2013 08:14:15 PM

ucbgal · Senior Member

db,

talk about having inner strength and determination to keep moving forward!!!

so pleased to learn; you're eot,home at last,hepc free,have a diagnosis of your new condition and are breathing on your own.

there is a light at the end of the tunnel,we all have to BELIEVE.....

please rest up and enjoy the company of your loved ones. i saw santa's list and svr for dustbear is #1 this year.

when you get settled in at home please start a log regarding your medical condition for future use. stay strong and proactive. sometimes i feel like i'm walking through a battlefield dealing w/ all these drs. and lab reports.

wishing you a speedy recovery.

sandy,ucbgal

Cinnamon Girl · Guru

Hi Dustbear, really sorry you`d had to go through all this, how dreadful! Good to know there`s nothing wrong with your heart anyway, and I do hope the lung disease will clear up completely. Just goes to show how important it is to monitor your own symptoms and be proactive while on tx, and thank goodness you asked the right questions when you did.

All very best wishes for a speedy recovery, take good care of yourself while you`re recuperating.

Keep in touch, we`ll be thinking about you! smile xx

mallani · Guru

Hi dustbear,

You probably had Interstitial Pneumonitis, which has been well documented as a side effect of Interferon. I enclose a link.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2822957/

Most cases resolve without permanent lung damage, but some patients require steroids. Just another reason to avoid Interferon! Recover quickly. Cheers.

Tig · Admin

Hi Dustbear! I was just talking with Sandy (ucbgal) about you. We have been wondering about you and I must add, very worried too. It appears after reading your post that our worry was well founded. My God girl, you have earned the Worst Treatment SFX Award to date! At least as far as I have heard! I know how sick you were and how bad you must've been feeling. My stepfather had Dermatomyositis, he couldn't hold his head up either, had the same problems you described. He had been exposed to radiation in Hiroshima Japan from the atom bomb and he developed all kinds of problems from it. I believe the medication they treated him with for the cancers he had did much the same thing as happened to you. When we start messing with our immune systems, who knows what can happen. I'm so glad they discovered it (you discovered it!) before anything else happened. I don't have to tell you to take it easy, do I? Just knowing you're okay and home from the hospital is one of our greatest gifts this Christmas! Thank you for letting us know. We really were worried about you. Time to rest up, give Santa a hug and recover for your well earned SVR!

Merry Christmas and Happy New Year!! This will be a good year for us all (Santa told me so!)

xo Tig

dustbear · Senior Member

Hi everyone! I was in the hospital for 14 days and after 10 days at home Ive found the energy to catch up with you all. I know I missed some great posts and EOT moments.

My Hep C treatment was stopped completely on Nov.25^th due to elevated Creatine Kinease (CK) muscle enzymes (inflammation of the skeletal muscles).

Tig you are absolutely correct and I round it up to 94%! Hehe

I found out that I did not have pneumonia! I had similar symptoms at first but as I recovered the shortness of breath did not go away.

Final diagnosis: The hepatitis C drugs, Interferon & Ribavirin, damaged me in 2 ways. The drugs caused an autoimmune condition called Myositis, and then Interstitial Lung Disease. Both were induced by the drugs.

Mallani you are on the ball as well.

Essentially, my lungs were suffering so much that my heart started to compensate hence the elevated triponin enzyme, low blood pressure (90/50) and rapid heart rate. But that was the red flag to say theres something else going on. As soon as I passed the Echo and MIBI tests, they stopped the Rimipril.

The shortness of breath is not pneumonia related so I had several chest xrays, a video of the diaphragm moving, and 2 highly skilled internal medicine doctors on my case. They saw scarring on my lungs and had me in isolation for 5 days thinking I had TB! I am still awaiting the results of the Lupus test.

Myositis is an inflammation of the skeletal muscles causing muscle damage, hence the elevated CK enzymes. It is mostly in my upper legs, hips, shoulder, arm and neck regions. It makes it difficult to support my head, lift my arms, to walk & climb stairs, and I am unable to stand from a squat position on my own.

Interstitial Lung Disease (ILD) was caused by both the drugs and Myositis. ILD inflames or scars the lungs making it hard to get enough oxygen. Specifically it thickens the structure that encases the lungs. This is why I have shortness of breath. I was unable to walk without oxygen, but I am recovering quite well. I only need oxygen if I exert any energy.

They say the drugs are gone from my body but the effects will last much longer, maybe six months. The muscle damage should go away once the effects disappear. The blood tests show it is already improving but I feel no change whatsoever. The pain pills only mask the pain, not heal it. I will be asking to see a rheumatologist if the symptoms dont get better.

What they don't know is if the lung disease will go away or not. This may be temporary or permanent. They hope that the shortness of breath will improve over the next few months as the effects if the drugs wear off. If there is no improvement a respiratory test and another CT scan of my lungs will be done prior to taking some high dose steroids for a period of time.

The good news is my heart is perfectly normal and the fluid around my heart will go away. I have been taken off the blood pressure pills. Also, my white & red blood cells, platelets are almost normal. The hemoglobin is at 93.

I am going for my EOT HCV PCR test tomorrow morning as well as CBC. I still have 6 months to wait for official SVR status.

One last word: If I had not asked them to test my CK muscle enzymes they would only have found the lung disease. I kept complaining about the pain in my body. It was so bad I could not brush my teeth or lift my arms for days! No one listened to me until they did that test. I had googled elevated CK and found my symptoms matched only one reason, polymyositis. The doctor asked me if I was a medical student! I laughed and said no, just very inquisitive so I can ask the right questions. One thing I learned is to ask questions, and question everything.

Cinnamon Girl · Guru

Hi Dustbear, so sorry you`re having such a rough time, what an ordeal! But thank goodness your doctor told you to get to the ER when he did!

Thanks for letting us know what`s been happening, it all sounds very scary but you`re in the right place and getting good medical care. Sending all best wishes to you, and hope you start feeling much better soon.

Keep us posted! smile xx

Biggyb · Guru

Wow, that's scary. Glad you found out early enough. I completely understand how you thought it was just the SX. I would of thought the same thing.. Rest up and get well,

ucbgal · Senior Member

dustbear,

am so relieved to hear from you . you're getting back into the swing of things & gradually gaining your strength. keep up w/ your oxygen ,rest and spirits.before you know it you'll be back in the comfort of your home.

after the extended length of your treatment i see a bright future for svr. our mathemetician tig said you completed 93.75% of your meds!!!!!

wishing you well and a speedy recovery.

sandy,ucbgal

p.s. some hospitals have staff computers at end of hallways. why don't you see if you can get online that way?

mallani · Guru

Hi dustbear,

What a ride you're having! Don't worry about the HepC Rx- you've had enough.

Are you sure you've got pneumonia, rather than pulmonary oedema? I can't imagine why you'd be on an ACE inhibitor (Rimapril) and having a MIBI scan if it was pneumonia. Sounds cardiac to me, particularly with a pericardial effusion. Anyway, it sounds as if you're in good hands and just concentrate on getting over this latest setback. Thinking of you-Cheers.

newmex · Senior Member

dustbear,

Heres hoping you are back on your feet soon. Cant imagine having pneumonia on top of the side effects, either one is bad enough. Best of wishes

John

Tig · Admin

My God Dustbear! I'm so sorry to hear you've been so sick. I'm glad your doctor had you rush to the ER. It's good to know that things are under control and you'll be home soon. I wouldn't worry about the loss of the last few weeks, you finished 93.75% of your treatment anyway, lol! I believe that more than qualifies! Sandy and I were just wondering how you were doing. We had no idea you felt so bad. With that behind you, my hope is for a quick recovery and a future SVR!!! Good luck, and keep in touch xxoo

Loopy Lisa · Guru

Indeed scary, glad you didn;t go to bed! Get well soon. x

smccune · Veteran Member

Oh my goodness dustbear. You have had a terrible time of it, but so glad you are ok.

That is so scary, but it sounds as though you are getting good care.

Best of luck in your recovery. Keep us posted. Will be thinking of you.

dustbear · Senior Member

Hi everyone, I'm alive!

I never made it to bed. Doctor called and told me to get to emergency stat They thought I was going to have a heart attack due to the elevated triponin. My hepatologist stopped tx completely (will move onto the post tx board) 24 days short of 48 weeks.

What they found was a full blown case of pneumonia. No wonder I couldn't breathe. With so many sx from tx I just figured it was from anemia. Turns out my heart was compensating and now have a temporary condition called Pericardial Effusion, which fluid between the heart and heart sac. They have me on Rimapril. My blood pressure was 90/50 and now abt 106/62. I go for a mibi? test for angina tomorrow.

Been here for 11 days and still on oxygen. They tried to wean me off but that lasted a half day. I need to have 90% oxygen on my own lung power. They hook up the O2 monitor on my finger to watch the level drop to 77% inside of 20 steps.

There is no wifi in the rooms except the coffee shop. They let me loose with portable oxygen so I'm having a tea in the cafe.

See you in the post tx board when I get home. It's been 13 days and I still feel like I'm on tx. ttyl and thanks for your well wishes. As well intentioned as the nurses are, they just don't get the sx of this tx. I may visit the ranr section later

-- Edited by dustbear on Monday 9th of December 2013 11:33:16 PM

-- Edited by dustbear on Monday 9th of December 2013 11:34:13 PM

Scruffy · Guru

Bummer DB.

I know hospitals stink but some times its better to be there than having 911 on speed dial. I'm sure your in a lot of ppls thoughts and prayers.

On a lighter note DB I went across the street to the lake where I live to get a little air. Theres a lot of ducks there. I said "good morning gobble gobble" to them. One duck turned to the others and said " close counts with this guy, we have feathers RUN".

Pulling for ya.

-- Edited by Scruffy on Thursday 28th of November 2013 04:55:17 PM

dustbear · Senior Member

Well I have todays test results and they are not good.

ALT 82

Fibrin D-dimer is 956 (should be <500) I have a blod clot in a fingertip.

CK muscle enzymes 1495 (should be <140)

Tropinin heart enzyme is .66 It was .22 last week and should not be increasing which indicates heart problems.

Hemoglobin is at 86.

The blood lab couldn't get a hold of my doctor so they just called me and told me to go to emergency! I had the ECG Friday twice and there was no problem so I'm staying at home tonight til I talk to the hepa doctor in the morning.

I did go to my naturopathic doctor today. He said my liver is not doing very well due to the destruction of muscle toxins dumping into it. Kidneys, spleen and bowel are good. I have nerve damage, adrenal glands and lymph glands are inflamed.

Off to bed and hope I don't have to go back to the hospital. The beds suck for sleeping and the noise is horrible.

JoAnneh · Guru

48 weeks seems forever! These last weeks
Are rough. You are almost finished.
I remember being so beat down towards the end.
We will need to throw you a party when you
Finish. Girl power! 48 weeks is no easy task.
Cheering you on!! Xxoo

Tig · Admin

My heart goes out to you Dust Bear! Our prayers and best wishes are coming your way. Your strength and determination is extremely admirable but don't hesitate to make the decision that protects you now. You simply don't need anymore surprises! Good luck, we're all pulling for you!

ucbgal · Senior Member

omg it's always something w/ these meds & don't forget you're on the 48 wk version. you have only a short time left & are UND!!!!! slow&steady wins the race,as i always told my students.

sandy,ucbgal

dustbear · Senior Member

Ya but I want to stop now if given the option! Stomp my feet like a baby. bleh

I never thought about risks to stopping at all. It is so close to the end. Once the Creatine Kinease results come in I wonder what they'll do.

It sure was scary CGirl!

Mallani, after researching the elevated CK enzymes, I am certain it is the muscles form of the enzyme. Yes they have ruled out my heart. I will get my kidney checked out later for sure. I also have every symptom of polymyositis which can cause elevated CK.

My anemia has been between 8-9 for 40 week. I have had the polymyositis symptoms all along but it only became unbearable last week. Maybe it's just an accumulation of the drug in my system. Who knows.

I am glad I pushed for the test as they couldn't find anything wrong with me. I think I got their attention! I think after whining for 40 weeks they just think the sx are acceptable, but I knew there was something very wrong and spoke up. I have a good medical team as long as I keep them informed they will help me. I also have all of you to educate and support me!

Scruffy · Guru

Ouch!! DB. The good thing is you only have 25 days left. Let me read you a quote from a famous book. The Little Train that Could. "I know I can, I know I can, I know I can." ( insert "toot toot" here ).....:) :)

Best wishes

Zlikster · Guru

hang in there DB! Your ride seems to be on the rough side, 25 days will pass soon :)

Cinnamon Girl · Guru

That must have been a very scary and painful experience for you, dustbear, thank goodness you haven`t got much longer to go now!!

Missing 2 days of riba won`t make any difference, so don`t worry about that, just take it easy, and I hope you`ll be feeling much better soon.

Keep in touch, best of luck! smile

Matt Chris · Guru

Hey Dustbear

Sorry to read about your event, at least you found out what caused the issue.

With all your treatment days you have really persevered , you are a real trouper and deserve only the best.

Hoping with you and for you.

matt

Biggyb · Guru

Hang in there Dustbear, your doing everything you can possibly do. Were all here cheering for you. Very good luck to you !!!

JIme · Guru

Hang in there kiddo, the end is in sight.

ucbgal · Senior Member

dustbear,

sorry to hear you had an overnighter in the er. well at least you got some answers to your medical problems and didn't need another transfusion. i wouldn't worry about stopping meds for 2 days. as i recall mallani stated over the summer that as long as we have 80% of the ribo we can still achieve svr.

one day out of 25 at a time.

sandy,ucbgal

newmex · Senior Member

Dustbear,

Im new here and don't really know you yet but have seen several of your posts and you sound like a real trooper. Wow, you've come a long way. Hang in there.

I, and I am sure everyone else here, are all wishing the best for you

John

mallani · Guru

Hi dustbear,

You're having your share of problems! Creatine Kinase used to one of the tests for heart attack, so that's obviously been excluded. It can also be elevated in muscle damage or inflammation, or in acute renal failure. I'm surprised your doctor stopped the Ribavirin, as I don't know of any association. At least your Hb should go up. If the CK stays >500, it should be fully checked out after you've finished Rx, but I would concentrate on getting to the end. In the USA, anaemia is defined as a Hb of <10, so it's possible your symptoms were due to that. Keep us informed. Cheers.

dustbear · Senior Member

I'm having a bit of a medical emergency.
It became very painful to breath last week and ended up in emergency Friday overnight.
My heart rate would race for no reason at all causing an extreme shortness of breath and pain on each inhale.
Also the pain in my body was so unbearable and moving from one part of my body to another.

Luckily, the doctor was an internal medicine specialist and knew the hep C treatment and my hepatologist very well.

They tested my heart and lungs and nothing is wrong. My hgb was 97, so it wasn't anemia.

So, I mentioned that my CK muscle enzymes Creatine Kinase were a little high this summer and so he tested me for them. Bingo!
They are supposed to be 30 to 135 units/L for women and mine are in the 1000's! So he contacted my hepatologist who called me today and said to stop taking the riba for a couple of days and then repeat the CK muscle enzyme test.

I will be retested in a couple of days to see if the enzymes drop.

Will keep you posted. I have 25 days left in a 48 week interf/riba tx. I'm almost there!

Hep C Discussion Forum

~Bob~

~Bob~

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