confused

[9196]

Hi, Ive had hepc for about fifteen years now. Last week I took my viral load for the first time. Still waiting for the results. I have never had elevated liver enzymes, so i waited. I am afraid i waited to long. I now have constant pain all over. My memory is bad. I have stiffness in my hands and brain lessions. I was recently told i have. MS. But could this all be hep c related? Could i be in last stage of cirrhosis?  Very scared at this point.

[flyinlynn]

I have 2 more pills of Harvoni

I was on Harvoni for 24 weeks and also Ribivirin 1000 mg added later so just 15 weeks of Ribavirin.

The reason I am taking this regiem is because I was a null responder to 3 interferon based treatments of 6 months each.

I also relapsed last year after taking Sovaldi Olysio for 12 weeks I was virus not detected and the end of treatment but when tested 12 weeks after treatment was ended I was found to have relapsed.

I also was diagnosd with cirrhosis in Jan 2008.


If your doctor prescribes Harvoni and your insurance turns you down twice you may qualify for the medicine for free from Gilead the maker of Harvoni.

Are you familiar with the cost for Harvoni? A single pill costs $1125.00 or $94,000.00 dollars for a 12 week treatment.

As you dont have your viral load test done yet it is entirely possible you do not have hep c at all just were at one point exposed so you have had a positive antibody test.

Good Luck

[SurfsideGal]

I hear your frustration and am so sorry you are dealing with all of this. The FDA does have a number where you can report side effects of medications. Here it is: 1-800-332-1088. Good luck to you.

[9196]

Hi, no I was not given gamma interferon . I was given Tecfidera. Tryed to stay on it for a few months. But i stated to feel week and very confused. It made my symptoms worse. My hands went from numb to stiff. I couldnt get out of bed for weeks on end. I was so tired. The feeling was undesirable. I would get confused in my own bed room. I started to also go into a rapid paralysis.  Definitely the scariest time in my life. It was making lose my mind.I decided to stop taking taking the meds on my own, to run a test. Today I have been off Tecfidera for over 3 weeks. I feel so much better. My mind is clear, my hands are better...I feel like myself again. I am self employed,  I take care of the elderly.  I am so grateful I still have my clients. This medication was like a demon drug. The drug actually has a component in it that they usto put in furniture spray!!! It would actually eat through the furniture!!! There is no definitive test for ms.My only symptom was a headache at first. They were quick to toss me samples of Tecfidera. Everthing manifested after that. I just hope I dont have irreversible damage due to the med.Im still tried all the time. My hands are better still feel pain. But nothing like the pain I felt though out my whole body. If I find out I was misdiagnosed for MS and I have any irreversible damage. I definitely know what road im taking from there. Sorry about my rant. Alot of the drugs the doctors give us are supposed  to better the quality of life. But I feel like alot of these drugs are pushed by  Big Pharma, given to the docs to push new meds on us to line there pockets. I had told my symptoms to the docs, the pharmaceutical company. ..and was told no other patients had those complaints. I find that very hard to believe. On Monday I will call the FDA to let them no of the symptoms I was going through. I just dont want to have anything undocumented.  And dont want other patients going through what I went through. Sorry for getting way of topic in this forum. Hope your doing well today. Have a good day.

[9196]

Thanks for the info Lynn:) I am hoping I qualify medically for Harvoni.I am willing to even pay out of pocket, if not approved by insurance. May I ask what treatment you are on? Or went through. Im worried about side effcts but hoping ill push though. This diease seems to have taken far too many, before their time. Sending you and others on the forum my best and good vibes.

[flyinlynn]

Hep c can now be cured in most case especially if your genotype of hep c is 1a the odds of cure are about 95-98 %

The newest treatment approved in the last year do not involve interferon if you are genotype 1 which the majority in the U.S. are infected with this type.

For example Harvoni is 1 pill a day for either 8, 12, or 24 weeks depending with for many patients minimal side effects. But this will depend on your genotype and individual situation.

I think surfside's question was are you taking gamma interferon for your MS.

Good luck
Lynn

[9196]

No, Im not on anything for the Hepc yet. Im just concerned having a autoimmune diease and taking anything that could make me worse. I feel im ready at this point of my life to start treatment. Ive been on Subutex for a year now. From what ive read the subutex will not effect the treatment. Im 38 not getting any younger!!! Its definitely time to try to get a grasp, on this whole thing:)

[SurfsideGal]

I think your question about having to stay away from any hep C drugs, due to your MS diagnosis would best be answered by your treating doctors. Are you on gamma interferon by any chance?

[9196]

Thanks guys...Ive been on the MS link a couple times. I am just so drained of energy its unreal. Not trying to whine but everything hurts. Guess im dealing with two major dieases. FML...lol. Guess I have to look to the brighter side..Hepc can be cured in some cases. Now after  i get my viral load back,depending on the results. ..I definitely want to start treatment. Im hoping my insurance will pay for hep c meds also.I have a feeing insurance may give me a hard time because i am on expensive MS meds. At this point all i can do is wait. I see my doc on Tues for viral load results. Does anyone know is there any  hep c meds i need to stay away from because of my MS?

[dontworry_behappy1]

Multiple Sclerosis and Hepatitis C are two different diseases.  Here is a link to the MS Medhelp forum.  

http://www.medhelp.org/forums/Multiple-Sclerosis/show/41

It would be beneficial for you to find out exactly what the symptoms
of Multiple Sclerosis are while waiting to see if you have Hepatitis C or not.  

[patra_]

I have a good friend with MS and have known several other people with MS.  The symptoms you are describing sound to me like what they experienced/are experiencing.  Please understand, I am not a Dr or in the medical field in any way, but, as I said, those symptoms sound just like what my friends had/have.

The good news is there are meds out there to control the symptoms, and to slow down/control the disease.  Also, as with hepc, those very expensive meds can get help if you meet the income requirements.  Our close friend's meds were outrageously high, when he started them (I imagine they are the same now), BUT between his Medicare and supplelemt and the PAN Foundation, he does not pay anything.  When he started on the meds he had no Ins and the whole thing was covered by, I think I am right, in telling you, the PAN Foundation.

You need to check the MS Forum for help and information.  Go to the top of the page, look for the blue stripe ABOBE the Tree of Helping Hands and select 'Communities'.  A screen will come up with lots of conditions, listed alphabetically.  Scroll down to the Ms and select Muscular Sclerosis.  I believe you will find help and information there.  Good luck and good treating for that.  

NOW, I agree with DWBP in saying wait for your hepc viral load results.  
You MAY have cleared the hepc on your own.  Somedo.  But, if not, there are wonderful, pretty much side effect free, short length of treatment meds available now! 15 years, is not long in the scheme of things with hepc, so you shouldn't be too far along in liver damage.  IF you do have it, get treated.

Your Dr will help youthrough all the ins and outs and we are all here  to answer questions, and generally support you.

Welcome to the Forum, please take a deep breath exhale and relax!  All this may feel overwhelming, but one step at a time, it can be dealt with.

here's hopingthe hepc cleared itself, but IF NOT, then good luck, good treating, and go get that dragon, so you can get on with your life!

God Bless you.

Pat

[SurfsideGal]

Sorry, I misspoke. I meant to say that NORMAL liver enzymes are not always associated with a benign course of hep C, people with normal enzymes very often have mild liver disease.

You are not describing the symptoms of late stage cirrhosis.

[SurfsideGal]

Hi. What you are describing seems more likely to be due to MS.  Brain lesions are not a normal symptom or consequence of hepatitis C virus. While elevated liver enzymes are not always associated with a benign course of hep C, people with normal liver enzymes very often have mild liver disease. Brain fog and memory issues are related to both diseases, as is muscle and joint pain, which comes and goes and is quite diffuse in MS.

I hope you get answers soon and get on with feeling better.  

[dontworry_behappy1]

Hi there.   I would wait for the results of your tests.  If you don't have a viral load....you don't have hepatitis C.  Even tho you test positive for hepatitis C you may have cleared Hep C on your own.  This happens to about 25% who test positive for hep c.