Just started treatment

[samanth1234]

I just started Sovaldi/Olysio combo treatment 5 days ago.  So far my only symptoms are fatigue (I was tired before from hep c), really bad headaches and some brain fog.  I try to drink a lot of water, keep calm and try to move about and not think about it.
My viral load when I started was 15,000,000 and everyone including SS Disability tells me that that has nothing to do with feeling extremely fatigued according to their records.  I had to quit my job because I could't function at all and am living off my savings.  The expert doctors at SS Disability tell me hep c is not a reason to be disabled.  
I am so happy to be on this treatment and hope it will work. It is a horrible disease and a silent one that people don't wont to discuss.  Not to mention, everyone has told me the symptoms of hep c (before treatment) are all in my head.  Nice to add insult to injury.  I wish everyone with this horrible disease treatment and a cure that will work.  I am hoping this combo treatment Sovaldi/Olysion will work for me (have lung problems since this is my only option).  Does anybody have any words of advise while on treatment?

Samantha

[truredhead]

Thank Goodness mine was not near that hard, I would have given up. My lawyer told me they really have to have doctor statements say you can not work a job for over a hour or so. You have to show them there is no job out there you can work at safely and productive. I had DDD disc with arthritis so my rheumatologist told them I could not stand over a hour at a time and could not sit with back and hips over an hour. I could not lift over 10 or 15 pds at a time. That pretty well got it for me. And it was so true. I also had Hep C. I had a MRI to back it all up as well as their statements.  Radiologist test reports are a great tool for them to see themselves.

[Frank J. Perrotta]

It sounds to me that you should have gotten SS Disability also.

It is tough to get everywhere but maybe your lawyer didn't get all your ducks lined up.

I had so many doctors signed on to my disability they had to wheel in the paperwork on a cart. I had my psychiatrist as well as an independent psych and then the feds psych. I can't count how many doctors reports I had... a pain doc, about 5 GPs, so many specialist it wasn't funny.

The crazy judge turned me down but his diagnosis was insane and in my appeal we added more doctor reports!

One thing my lawyer taught me was that as soon as you walked into the door of a docs office start telling how you really feel. Ya know how every one asks "How are you?" and we always say "Fine. How are you?" Well, start with the secretary and tell her/him how you really feel. Keep a diary, as you have brain fog as I had/have, for your doctor appts.  I still do this over the years with questions and what has been happening over the weeks... !

Those doctor diary over the years have been invaluable as I can look over them for so much info...

Getting an appeal heard won't be easy but I would be on my lawyer to get a lot of new stuff done asap! I might contact someone to see if your lawyer was negligent and if your case should be re-heard?!?! Just a thought.

Best of luck, frank

[truredhead]

Today is my third day on Sol/Oly. I can not tell I am even on treatment. I am hoping it will stay like this. Yes your first goal should be to get rid of this terrible hep c. It can really affect your health. I have had so many aches and pains and rashes and fatigue And also depressed. Hang in there and lets do this treatment for a great end result!

[samanth1234]

Thanks for your advice with SS Disability.  I did file an appeal but have not heard back from them.  I think it must be pretty tough in Illinois to get disability.
I am grateful to be finally be treated for hep c.  I am hoping this will work.  I am 8 days on meds and really no change in symptoms so far - just a little headachy at times, fatigue and brain fog here and there.  Very mild symptoms compared to people that were treated with the older meds.  I hope you are doing well on your meds too.  I guess it is a day to day thing but keeping upbeat and taking care of yourself is very important.  
Samanth 1234

[truredhead]

Oh you should have got it. Have you been to a rheumatologist?  My doctor told the disability board on paper that I could not lift over 10 pds at a time and could not stand over an hour at time or sit any length of time. So that knocks you out of a desk job. I think my degenerative disc was the main thing on mine, And you have COPD? My husband had that and they need to say you can go into a spell where you can not get a breath. That in itself is a terrible disease. Well, you will be able to get more back pay until you find a doctor that will tell them the truth of your conditions. That was so wrong you have some serious things going on. Keep looking for a doctor who has helped people get on social security, especially one who will take the time to do some paperwork for you. I am getting ready to take my second dose of Sol/Oly. I could not tell a thing different on the first! Keep your chin up and keep trying for the disability, please. You definitely deserve it.

[samanth1234]

Turedhead,

Thank you for your kind response and advice.  I had a lawyer and a court hearing and was denied. I have several issues as well - nerve damage from lung cancer, COPD, degenerative disc and hep c.  The expert doctors for SS said that I still would be able to work a desk job.  My hep c doctor prescribed ritalin so I would stay awake while working but it elevated my blood pressure sky high so I had to quit taking it.  I eventually quit working and am living off my savings until I feel well enough.
On Sovaldi/Olysio a week now and headaches are less frequent and besides feeling tired, I actually am starting to feel a little better.  My side used to hurt a lot and now I don't feel the pain there anymore. I am wishing you the best in treatment and hope we can put this behind us as well.
Drink lots of water and try to eat healthy.  Also, be good to yourself while on this - sleep when you need it and relax.  I think it helps.
Samanth 1234

[samanth1234]

Thank you Patra for your kind response.  I am keeping upbeat and positive and taking care of myself while on this.  It seems after a week that my headaches are less frequent and even though tired, I actually am starting to feel better.  My side used to hurt all the time and I don't feel any pain there anymore.  
I am hoping this will work.  I wish you all the best in your treatment too and we can all put this disease behind us.

Samanth 1234

[truredhead]

Did you have a lawyer for your Soc Sec disablity? They turned me down once  I got a lawyer. I got disability but I had a degenerative disc and also fibromyalgia. You have to keep trying to apply. They did not talk much about the hep c, I think that I got it for several things going on. I wish you luck and get a good social security lawyer that specializes in this field. Ignore if you have already done this. After you get rid of the hep c you will have a whole new determination. We are both on the same journey at the same time, I started my Sol/Oly this morning.

[patra_]

S:  Not on the same med ( Gt3 so on Sol/Riba) but understand where you are coming from.  Take a deep breath, and try to relax.  Your mantra, at this point, is 'this is doable - others have and are - so I know that I can, too'.  It is easy to get depressed when you are feeling so fatigued and have headaches.  Ck w/your Dr for an approved med for headaches.  I remember on INF (many years ago) they had me taking Tylenol, but I do not know what is approved for Sol/Oly.

Besides, you now have a 'secret weapon' - this site and the support  you will get from everyone here.

Hang in there, and, as several say in here, be good to yourself.  Take it easy - and don't let what those people who have never experienced this, say because they have no idea and they don't even know that they don't know.