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Co infected with HIV and 1b Genotype Doing Solvaldi and Ribiviran

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Posted 9/6/2014 7:20 PM (GMT 0)
I am co infected with HIV and Hep C and started treatment for Hep C. My HIV is stable but my liver enzymes were in the millions. I tried the only available treatment in 2007 which was Interferon and Ribivirian. I got terribly sick and lost over 50lbs. And came close to death. It did not work. I believed that I would not die from HIV but would die from Hep C.
Seven years later, here comes Solvaldi as a possible cure for Genotype 1. I have retired and turned 57 this year and as a long term survivor of AIDS was pretty much waiting my time out.
The only side effect that has been troubling is that I am out of breath all the time. If I walk a block, or up stairs, I have to stop for awhile to gain energy and breath.
Please let me know if there is anyone else out there that has experienced this same problem with breathing as a primary problem and side effect on these meds.

Always, New York Pat
Posted 9/6/2014 8:50 PM (GMT 0)
Hi Pat,

Welcome the the Hep forum! Glad you found us.

Are you treating 24 weeks, and how far into treatment are you now?

Riba tends to cause this breathlessness and exhaustion as the anemia kicks in. Some of the 12 week treatments do not mention this as much. My husband, treated with interferon/riba, and failed. Then he decided to try it again in 2011-12. That time it worked! He is a GT3a, so it was 24 weeks and easier to obtain SVR for a GT3. I think he got every side with the 2nd time around, but the 1st treatment he worked through...sickish, but able to manage through. The 2nd time he was bedridden, so I understand your first treatment experience.

We are all lay person's here, so run anything troubling past your doctor. Again, Welcome! Big Hugs
Posted 9/13/2014 4:16 PM (GMT 0)
Thank you so much for the response. I finally was able to get approved for Procrit and it has helped tremendously but between the shortness of breath and nausea, it is the only side effect that I am experiencing. I must say that it is enough. I am a full time student and trying to continue with my studies as I feel it gives me an out. I retired in 2009 and am so glad I did that as I have a very flexible schedule now. Being co infected is really difficult. I know how blessed I am to still be on he planet. Once again, thank you.
Posted 9/13/2014 4:18 PM (GMT 0)
Also, being 1b genotype, my doctor put me on a 24 week regimen. I pray hat this will be the last of the treatments for me.
Posted 9/13/2014 6:12 PM (GMT 0)
Where are you in the 24 weeks, Pat. I do hear co-infections are rough. Long term survivors are really a miracle and I admire your courage to get up and survive the battle each day.

Themister was put on rescue drugs at month 4 during his 2nd treatment. He was hospitalized. Themister felt so much better, and completed, obtained SVR. Worth it to get that SVR report. He was drinking all the water to help with sides, and we treated the nausea like any stomach bug...Ginger Ale became his new, best friend...and chicken noodle soup, jello, popsicles, soda crackers. Some doctors give a nausea med. Also, take the riba with something fatty..peanut butter on toast or cracker, or avocado. Just some suggestions. Since you are an expert at this already, I guess I am preaching to the choir:) We Care, Big Hugs

PS...I too hope this is your last treatment. The next new thing is Ledisprivir, a one pill combo that will be shorter in duration with less sides, from my info. Things get better and better in treating blood borne disease.
Posted 9/13/2014 6:27 PM (GMT 0)
Thanks for the feed back.. I am on week 5 doing a 24 week treatment. Monday I will begin week 6. I am positive for 30 plus years and sober 19 years. I have survived all of my childhood friends and lovers. My current partner of 23years is negative. My partner before her died of Hep c and Aids in 1990. I am very grateful to still be here on the planet but getting older and dealing with this dual diagnosis has gotten harder. I would be so grateful if the Solvaldi and ribiviran actually gave me one less thing to worry about in life which is Hep C. I believe my strain of HIV was a very light strain or I would be dead otherwise. One of my best friends here in LA did not get the meds quick enough. We had such similar paths but he would not do the interferon and a few years ago lost his battle. He was also positive and Hep C 1b genotype.
I do not want to go die of this disease so I continue to keep the faith and trudge. The nausea and breathing because of the anemia is the worst part of this treatment. Hugs to you and your husband for being troopers as well as advocates.

Love and peace always,
Pat
Posted 10/13/2014 10:14 PM (GMT 0)
NewYorkPat, I am also co-infected HIV and 1a. I have also been infected for at least 25 years maybe more with hiv under control. I completed the 24 weeks of sol/riba around 3 months ago. I will be taking my 3 month svr test in a few weeks but have remained undetected from 4 weeks after starting the treatment until my latest test about 2 months ago. My doc says it's likely I will achieve svr/cure status.

I did have a tough time throughout treatment getting worse towards the later part and even post treatment. I did manage to complete it but it was not easy for me. Post treatment wound up being harder, as I am just starting to get some more consistent days of relief but it reverts back. My toughest symptoms were extreme fatigue, memory and concentration issues, insomnia, very weak and dizzy at times, vision issues, blurrier than usual and got this new vision jumping issue when I focus in on near objects or reading and body twitches/jerks mainly when I'm resting/sitting/laying down, it's weird but never had it before this medication. After treatment I also started getting a very wacky immune system with on and off sore throat/flu like symptoms. Still have it a little bit but it's subsided quite a bit.

I hear most don't have the amount and longevity of symptoms that I've experienced so time will tell if they are/were hep c and sol/riba related. I'm starting to think I have chronic fatigue syndrome, since the fatigue does not seem to be improving much. I wish you the best and welcome a lending ear or comparing notes as you continue your journey.

Best wishes, Mia
Posted 10/13/2014 10:29 PM (GMT 0)
I forgot to mention, I also had shortness of breath as I was border line anemia. It did get better as treatment went on and even continued a little bit after I stopped the meds. but It's completely gone now.

I also did had major mood swings and that thing called riba rage which also lasted a couple month beyond treatment, it's just finally stopped I'd say about a week or so ago. I was lashing out at people having very little patience and getting teary towards the later part of treatment, It was due to feeling so lousy all the time for so long. It was really getting to me and significantly impacting my life. I did finally find out after treatment, that it could take 6 months to a year to really feel better. I am only now just starting to get some relief but not consistently yet. from all my research and reaching out to doctors and forums, I appear to be the minority w the side effects.
Posted 10/14/2014 1:04 AM (GMT 0)
Mia, Hi! Glad to see your post today, and to hear the riba is washing out of your system. It can take some time. Some don't seem as slammed by it, and each treatment seems some different, even in the same person. Of course....I am awaiting your SVR results. So glad to hear from you. Hopefully, NY Pat will pop in and give us an update :) Big Hugs
Posted 10/14/2014 5:56 PM (GMT 0)
thank you themiz. I am looking forward to taking hep c off my list, it will be such a huge relief and milestone.

I wish the debilitating fatigue and brain fog would go away now or at least ease up enough so I can consistently work. It's so hard not knowing if it's the hep c and meds or other medical issues. I am/was determined to get to the bottom of why I am so fatigued and how to manage/cure it but it's been doctor after doctor and the medical bills are piling up w no income now that ltd has denied me due to pre-existing condition clause.

I am keeping the faith and pray this turns around very soon before it gets to be a very serious financial situation. Best regards, Mia
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