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Author Topic: Side Effects Couldn't Possibly Make Me Feel Worse  (Read 12613 times)

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Offline shEEEsh

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Side Effects Couldn't Possibly Make Me Feel Worse
« on: December 06, 2014, 04:07:45 pm »
If I joined this forum in August when I learned I had HepC this post wouldn't be so long. Much has happened since then. I will be taking Sovaldi and Ribovarin starting Tuesday. It has been a 3 month ordeal but can't blame them. After all, it's $1,000 per pill.

My doctor is supposed to be very good but I don't feel like he answered any of my questions. Mostly I want to know if I feel as sick as I do because of the HepC or could it be something else too. He just said, "Don't worry, you will be fine." Considered changing doctors when getting treatment was moving so slow but couldn't because by then I was in the middle of applying for the free Sovaldi.

My insurance denied the referral for the drugs and then denied the doctor's appeal because I don't have any cirrhosis .. YET. Once the appeal was denied Sovaldi approved me for 3 months FREE and PAN (I think) is paying for my Ribovarin. My only income is social security and that doesn't go very far.

I discovered the HepC when I went to a Rheumotologist because my PCP thinks that I might have Lupus or something similar. (Dr. House says "It's never Lubus.") The labs indicated that I did have either Lupus or RA but when the Rheumotologist found the HepC he didn't want to test further, he said "Take care of your HepC first." That was August 2014. Since then I feel like I am slowly dying. If I walk from my bedroom to the kitchen and back I am exhausted and out of breath sometimes. Taking a shower tires me out. All I want to do is sleep. Don't know if that is the HepC or Lupus or my COPD. I am also diabetic but have that pretty much under control with insulin. I hope I feel this way due to the HepC because if not  after treatment I have to start all over again trying to figure out what's wrong. Let me quote the most HORRIBLE Rheumotologist on the planet, mine.  He said "We will worry about the Lupus later, you have HepC and I think you have cancer too!" I said, "HepC? Are you sure? How would I get that?" and he said "You tell me." What a guy huh?

At first the HepC doc said "Let's wait for a trial (since you have little money and no cirrhosis.) I found that I could maybe get the Sovaldi free and had to really push him to get the papers filled out etc. Can't help but wonder if a doctor gets paid for submitting a patient into a trial because he really put on the brakes when it came to applying to Sovaldi and battling the insurance company. I blame his staff for most of the delay, in fact, my Sovaldi arrived there almost 2 weeks ago but the office person said "You need to make an appointment with the doctor and he is booked until Dec 8th." That's nuts, right? I could be on my way to recovery. He already explained to me back in September how to take the Sovaldi and when to follow up with blood tests etc.

Offline lporterrn

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  • LucindaPorterRN
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Re: Side Effects Couldn't Possibly Make Me Feel Worse
« Reply #1 on: December 06, 2014, 05:04:22 pm »
Hi shEEEsh - First, when I read your post, my immediate reaction was shEEEsh!!!! You earned your name.

What I know from my clinical experience is that the liver is amazing and a few months won't make a difference. I am sorry for the unnecessary wait, the battle, and the weight of it all, but I am glad you are on your way.

What does concern me is the fact that you will be taken ribavirin. If you are exhausted and out of breath sometimes, in about 4 weeks that will likely be :all the time" and in 8 weeks, it may be pretty intense, esp with COPD. Be sure you know this go into this. You can do it - it may not be fun, but it is doable. Stay close to the Forum, and we can help you through. Also, don't expect to feel better until 4 to 8 weeks after you are done with treatment.

Keep your eye on the prize - you can live free from hep C and get your life back.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline shEEEsh

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Re: Side Effects Couldn't Possibly Make Me Feel Worse
« Reply #2 on: December 06, 2014, 06:04:02 pm »
I wonder if maybe it isn't really COPD but a symptom of HepC ..  One doctor said COPD and the other is the one that thought my body falling apart like this was due to Lupus. Also, I was concerned that my breathing problems, be it COPD or Asthma, would get worse with the Ribovarin.
« Last Edit: December 06, 2014, 06:05:45 pm by shEEEsh »

Offline denise1

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  • fimished harvoni
Re: Side Effects Couldn't Possibly Make Me Feel Worse
« Reply #3 on: December 09, 2014, 11:51:06 pm »
Hello, I have SLE Lupus, Diabetes's and HEP C and Chirrosis, Mastoiditis, degenerative bone disease and anemic.. I got approved for the Harvoni in less than 2 hrs after my doc, insurance(Medicaid) and Bio all reviewed my case. I should receive it any day now.  My Genetic testing showed the Lupus was 100 % neo natal. SLE lupus is terrible. Their is 3 kinds of Lupus. but, it can an does go into remission at times. My cousin also has SLE Lupus an Hep C. He now has to live with his son. he cannot live alone.  He has been to several Specialist for 10 years. he has been told nobody really knows about the Lupus it affects everyone different. He takes so many pills it's unbelievable. I have been in chronic pain for years on and off. if I don't eat right life  is really bad. I have to keep and do keep a positive attitude or I would go crazy. I am so happy I got approved for the Harvoni. I think it will make a world of difference in my life? I take lavender, peppermint, lemongrass and cypress. maybe you could try some essential oils like some of us on this site do and see if u get any relief, I'm sending positive thoughts your way. The Lupus will make your breathing difficult if you have  it. I do no that.
I was diagnosed in March 2014. Specialist said I have had Hep C A1 for 30-35 yrs., Hepatic Lesion tumor or cyst is 1", Alpha-Fetoprotein is 32.2. HCV RNA is 21100000. No mass Identified. cirrhosis, Infected Spleen. Will go today to get labs on HCV/RNA update. Will start Harvoni in approx. 1-2 wks.have SLE Lupus

Offline shEEEsh

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    • OMiGosh : All Things Silver & Gold
Re: Side Effects Couldn't Possibly Make Me Feel Worse
« Reply #4 on: December 10, 2014, 09:18:14 am »
Started my Sovaldi/Ribovarin just yesterday.Until then I had very dry mouth. Was tested twice for Sjorgen's Syndrome (note sure of the spelling.) but in any case yesterday was the first day I didn't have dry mouth and also I had to eat sugars to get my blood sugar to 100.  It went as low as 50, after eating dinner, and ice cream sandwich and a handful of grapes I got it up to 100. Woke up this morning and it was back down to 70. That's before my insulin and metformin. Haven't done either yet. I need to watch those levels closely I guess. Very tired because I had a hard time staying asleep last night.

Offline denise1

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  • fimished harvoni
Re: Side Effects Couldn't Possibly Make Me Feel Worse
« Reply #5 on: December 10, 2014, 11:11:23 am »
My diabetes Is getting lower also I got diabetes 1 year  after starting Diet Coke and Diet sugars. the product has Ant Killer in it. now I know this. I quit taking any diet products or anything that says low fat or natural. I also had not 1 cavity at the time I was 40. a year + I started feeling worse than normal and got four cavities. Needless to say I quit all Diet Products. I almost died with the first cavity. the Dr.'s thought is was a sinus infection. I had very nice looking teeth until all of this happened. I was then showing signs of Lupus but Doctors thought it was in my head.
I keep trying to tell Doctors I think all of my health issues came from being on Steroid shots and pretension in my knees and neck  elbow and back since I was 11 years old on an off. I was in a car wreck when I was 17 and more shots then. the UCLA Doctor I went to when i was approx. 35-38 told me I was 2 young for the operation. he is the associate professor, ie at that time. I also have neuropathy very bad. I have sjogren's syndrome 40-70% my dad also has that. I have mixed connective tissue disease.That's the SLE Lupus my ast in Feb was 102 an alt 132 this scores were after being on prednisone  for 2 mos. so the test were different because of the prednisone. @ mo. @ 10 mg a day. I will never take it again. Denise
I was diagnosed in March 2014. Specialist said I have had Hep C A1 for 30-35 yrs., Hepatic Lesion tumor or cyst is 1", Alpha-Fetoprotein is 32.2. HCV RNA is 21100000. No mass Identified. cirrhosis, Infected Spleen. Will go today to get labs on HCV/RNA update. Will start Harvoni in approx. 1-2 wks.have SLE Lupus

Offline Mike

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Re: Side Effects Couldn't Possibly Make Me Feel Worse
« Reply #6 on: December 10, 2014, 11:12:17 am »
Hi Sheesh,

I'm a diabetic and was going hypoglycemic during  treatment. You might want to consider bumping the insulin down a bit, which is what I had to do.

Of course this needs to be done under the guidance and direction of the physician who is handling your diabetes.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline rainbowray

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  • Gen 1B
Re: Side Effects Couldn't Possibly Make Me Feel Worse
« Reply #7 on: December 10, 2014, 11:27:53 am »
Hi Sheesh,
I have hepc and found out my Rheumatoid Factor was high, but I do not have Arthritis. I found out that the hepc causes a liver enzyme to enter the blood called cryocrits and causes cryrobolimia, which causes an autoimmune issue in the blood.
Can cause small clots, nerve issues....some other stuff. That is why the RF is high.
You may ask about this, cause it sounds your issues are related.
Getting rid of hepc can improve or cure the RF issue. I am in progress and will find out in time.

 


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