Olysio/savaldi side effects after treatment. Blood clot & brain tumor

[Lookingforanswers]

 Good evening, I am new to this group and I'm looking for answers. On April 4 of 2014 I began taking Olysio Savaldi combo therapy. Within the first couple weeks of taking it I began having symptoms of weakness in my leg.  Within just a few weeks from that point I was using a crutch just to walk. Within a few weeks of that point I had to use a walker to walk. I searched everywhere for answers.   I went to the neurosurgeon I went to the orthopedic surgeon I saw neurologist and even went to mayo clinic, nobody could give me any answers. This went on for  several months until one day I woke up with excruciating pain and went to my emergency room near my home and within minutes they diagnosed me with a 100% occlusion  to my left fE oral artery.  In other words my leg had a heart attack. I spent two weeks in intensive care.   I had bypass surgery on my femoral iliac arteries. The surgeon removed a blood clot the size of a marble and his hard as a marble.  The surgeon told me that the client had been there anywhere from 6 to 9 months and this is why I couldn't walk. This clock definitely didn't just form even in the pathology report, it was stated that the clot appeared to be several months old.  This is where my story comes in. Two years prior to taking the combo, I applied to be a candidate for the trial of both meds. Of course they were not called by the names they are called today. It was a group of numbers and letters.  They denied me because I had a blood clotting disorder. Fast-forward two years later in it's no problem to take this medication according to them and my doctor.
Even though I eradicated the virus my life has never been the same.  Not only do I have to remain on blood thinners for the rest of my life they have also discovered a tumor in my brain five months after taking the combo. This tumor was not present prior to taking the medication I had an MRI on my brain just a month prior to treatment. This brain tumor was found in October, just three months to the day of my last pill. It was found at about 5mm and as of four weeks ago, it's at 2 cm.  if you do the math any years time, the tumor has more than tripled in size. So, chances are when it was found in October of 2014, it was new.  Believe me I have done so much research on this and have all the documentation to prove my theory that this medicine is extremely dangerous!!   Please if anybody can help please contact me. I went from a happy-go-lucky woman to a  very sick woman since that first pill that I put down my throat.   Why are the drug companies not replying to the request of the case study two years prior to the medication in the off label market of the drugs?   Something is not right and I will research and post until I get answers. I am a mom and a foster mother.   And I have a lot of love to give but I just can't anymore. Most of my days are spent in bed still with brain fog that never went away. Please help!

[gnatcatcher]

Good morning, Lookingforanswers. I'm sorry you have so much to deal with and the blood clot was missed by the Mayo Clinic, but I'm gad it was caught before it might have traveled to a place where it could be fatal. In 1999 I had a blood clot in my leg that traveled into one of my lungs. That's when it was discovered that I have the blood-clotting disorder called antiphospholipid antibody syndrome, so I have been on a blood thinner (warfarin = generic Coumadin) for more than 16 years.
   If you haven't already done so, please report your diagnoses to the FDA [by phone at 1-800-332-1088; by fax at 1-800-332-0178; via www.FDA.gov/medwatch; or by mail to MedWatch, HF-2, FDA, 5600 Fishers Lane, Rockville, MD 20857 (use postage-paid FDA Form 3500)]. When the FDA receives reports of a number of people experiencing a particular adverse event while taking a certain drug, then the FDA issues a warning to health care providers. This link will show you such a safety update the FDA sent to health care providers when there was evidence that Sovaldi could be extremely risky for people taking a certain other drug: http://forums.hepmag.com/index.php?topic=2426.msg17321#msg17321 Since Sovaldi was one of your medicines, the link also indicates how to report to Gilead.
   You are the first person I have heard of who had a brain MRI before starting Tx for HCV. It sounds like you and I share not only having a blood-clotting disorder but having other medical challenges besides HCV. Trying to figure out whether two different things just randomly occurred together, or whether one caused the other is incredibly difficult. When I saw my hepatologist after reaching SVR12, I asked which of my other chronic conditions would turn out to be extrahepatic manifestations (EHMS) of the HCV, and he replied that only time would tell: if they get better, they're EHMS; otherwise they're separate diagnoses.
   Are you able to walk now? Were you able to have the brain tumor removed, or is that still in the future? You and your children are now very much in my heart.

Gnatty

[BillT]

Hi Lookingforanswers,
                                 I'm sorry you're having to go through all this and hope they can sort it for you.I'm not a doctor and never will be so these are just my personal  thoughts.I'm just talking in general here,and I'm not saying your that I think you're wrong because I have no clue.Every now and then there are posts about really odd serious problems like you're having.I've often wondered when I read them if they would have happened even if someone hadn't been on the medications.I agree with Gnatty to report it,but like I said it's just something I've wondered and thought about.Best of luck to you,and let us know what you find out.

[lporterrn]

Dear Looking,
My fellow Forum members said what I would have said, so I'll start with words that I wish were gestures - I am sorry that you are going through this - it all sounds awful and if a hug could be sent electronically, then I would send one.

As for your desire for answers, none can be provided here. As someone who has worked in healthcare, I can speculate, but speculation is merely that, and honestly, my speculation will not be helpful and may look like I am dismissing your pain, which is the opposite of what I want to do.

I pray it doesn't sound thoughtless when I say that for me, living in that kind of quagmire of questions is painful, and after I do it awhile, it helps to try acceptance, and then asking a new question, "OK, now that I am in this mess, what am I going to do with the rest of my precious life?" Perhaps this won't work for you, and if it sounds condescending, then just ignore it. What works for me doesn't work for everyone.   

In any case, I hope you make peace with this soon.