Symptoms of Fibromyalgia after Hepatitis C Treatment

[cliff1961]

Has anyone been diagnosed with both Fibromyalgia & Hepatitis and completed a full course of Hepatitis Treatment which resulted sucessful in removing the virus?

How was your symptoms of Fibromyalgia before your Hepatitis become active?

Now you have completed the Full course of treatment for Hepatitis how is your symptoms of Fibromyalgia affecting you now prior to treatment?

1: Better ?
2: Same ?
3: Worse ?


My Fiance' has suffered with Fibromyalgia for the past few years with the main symptom only being Burning hips at night in her sleep.
Only this year she had been diagnosed with Hepatitis C as the virus has just become active.
Now the virus has become active her Fibromyalgia has spread throughout her body and pain become far more severe, as it is said Hepatitis can be a known trigger for Fibromyalgia.

But i am curious on knowing how anyones symptoms of Fibromyalgia is after clearing the Hepatitis C Virus ?
Now the Virus has been removed, there is no trigger from the Hepatitis so does this relieve the pain for the Fibromyalgia?

YES?
NO?

[CoWriter]

You said.....
"Only this year she had been diagnosed with Hepatitis C as the virus has just become active."

" then once her Hepatitis woke up from the DEAD! "

I'm afraid you'll have to rethink the whole thing.  You see, hepatitis C doesn't "become active".  It is ALWAYS active.

So if her symptoms suddenly became much worse, then perhaps she has a different type of arthritis.  Sometimes it takes time to watch the progression of symptoms before the true diagnosis becomes clear.  So it would be a good idea to be evaluated by a rheumatologist.  

Because the medications now being used to treat hepatitis C are fairly new, we really don't know much about the side effects they can cause and what they will do to existing problems.

The old interferon treatment could make anything worse.  I'm hoping it will be different with the new meds.

Co

[Evan_the_elder1]

Hah! At just week two my viral load has dropped from 2.4 million to just 961 (log 2.98). That is very fast response and it means that by now I am most likely undetectable in just over three weeks. All liver numbers are normal. This is as good as it gets. I am also noticing some reduction possibly in my fibro but it isn't enough to say for sure. It was feeling worse in the first couple of weeks but is now back down to "normal" or even slightly less, maybe. I am now at day 23 of Harvoni.

This is just plain all GOOD.

[Evan_the_elder1]

Something I forgot to mention: With Harvoni it says it can be taken without regard for food. BUT, in the monograph it does mention that the "area under the curve" for the blood level it larger when taken with a high fat meal. That means the total amount in your blood goes to the same maximum level as no food but it stays there longer. That is a "good thing". So always take it with a high fat meal just before you take the pill. I have been using a three egg and hash browns meal as that is very well balanced food, good enough to create a chicken. I also have had a couple of small haemorrhagic strokes in the last five years and cholesterol helps to prevent that type of stroke by strengthening the artery walls.

[Evan_the_elder1]

I got 12 week approval with no deduction at all. They will cover every cent. I actually started on November 10. I haven't posted until now because I have been waiting to see what side effects I will have. I have now taken a full 7 pills and have zero side effects, nada, nothing at all. I am almost starting to worry that they gave me a placebo but it looks very real. If this is how it continues it couldn't be any easier. I also have a low viral load and have never been treated before. With type 1b, low BMI at 19 and doing everything else as correctly as possible I should have 100% cure rate. I just hope and pray that it will also reduce the fibro. If it does it will be heaven on Earth.

[patra_]

So glad to hear you are beginning treatment.  We are all pulling for you!  Did you get the 12 week approval?

Blessings..........and on to SVR!

Pat

[Evan_the_elder1]

I am finally actually going to start treatment next Monday, Nov 9, 2015. About time. The med system here is not doing well. They lost some of my tests like the genotype and had to redo them. Anyway, it is about to start so I will make some reports on how it goes. I am sure wondering how it will affect Fibro. I have a new doctor in on this and she told me that here experience is that the fibro fades for a lot of people. I sure hope so.

[Evan_the_elder1]

I will also try to remember to make comments as my treatment progresses. I found out today that I am fully qualified for the treatment so it will be a go as soon as I can get the testing done for viral load and other factors. Regardless of current viral load I want it for 12 weeks, not just 8. I do not care how crappy it makes me feel during tx, I want it GONE!

Yeah, I have been on morphine too and normally take 270 mg of Codeine every day. I am not the addictive type and some days I forget to take the codeine tabs right up to bed time and then wonder why I feel so bad.

Ditto, good luck to everyone for 100% cure rate. I hate the truly evil devil hiding in my body and making my blood a poison. It makes me very upset at the thought of ever accidentally infecting somebody else. I am so wanting to be free of it. That will be the best day of my life, not including the birth of our children. It's a crying shame my wife deserted me with zero warning four months ago after 45 years together.

[Calthegal]

Like you I have been praying that the fibro symptoms which are disabling, will go after I tx soon with Viera Pak. I am on Lyrica 325mg a day and find the need to increase the dose more frequently. It helps with pain and energy but I can't stay on it forever. I shall pop back in ince I am on tx and let you know if fibro is helped. I had fibro 20 yrs ago and it went after getting pregnant and came back after unsuccessful ifn attempt to tx. That was 4 years ago. It has been so bad I have been on morphine at times. Good luck everyone.

[Evan_the_elder1]

SS, Your response is what I am looking for. I have had Hep C 1b since immunoglobulin injection by Army in 1969 and general pain since middle 70's. I was diagnosed with Fibro in 2005 and Hep C in 2010. For reasons unknown I have no apparent liver damage but the fibro has been bad enough that I am disabled. I am now 65 and just last March Harvoni has been approved here. It is the first treatment I can take because I have low platelets for reason other than the HCV. I have been wondering a lot if the Hep treatment can help the Fibro. According to some studies the Fibro comes up with Hep 1b 57% of the time. The cure rate for me should be 100% with Harvoni so I will be getting it as soon as my doctor approves. I just hope it doesn't make the Fibro worse. I can handle it now but it is no fun at all. I sure don't want it worse. Better would be a nice present.

[Sandeshells]

I had Hep C for probably thirty years, and fibro about the same ...  I did the Harvoni treatment and finished about a month ago. I can't say I feel any better at all.  I sure wish I did.  

[otterwatcher]

yes same as you but pain fatigue balance etc problems came on overnight 3months post treatment just as I was starting to feel a tiny bit better. After 5 years of fighting for a diagnosis,I was finally diagnosed with Post Interferon Syndrome by my liver consultant.
6  years post treatment nothing's changed for the better.
cognitive issues not resolved either,.

[Lilbits48]

I was having stomach issues in 2000, ( gallbladder), found out I had hep c. Hadnt had anything going on ecept the gallbaldder thing. I found out during the course of bloodwork that I had it. Went thru those wonderful treatments! Since then I have had so much pain! Joints, mainly knees, shoulders, has become much worse. Is in my hands, feet, back, hips, etc. Feels like there is a hot poker inside them, they ache so bad, some days its a chore to walk!! Was checked for RA, came back positive, but they are sure thats from the hep. So they tell me I have osteo, and fibro, and my viral load is back up! More or less its a combo of all, and sorry bout cha deal with it!! So frustrating! They have had me on so much crap, I finally said to h*&* with it! I do take the hydrocodones, but they arent even touching it anymore. Dont want to go up on those, the addiction thing ya know. Just ticks me off that they dont tell you all the crap b4 hand! I had no aches n pains prior to treatment! My mom gets around better than me some days! I'm only 48, I have a physical job, raising my cousins 2 yr old, and some days I feel like I'm 80!!!! Sorry I guess I jus need to vent to some people that might understand where I'm coming from! Thanks for listening........Linda

[cliff1961]

My Fiance' was diagnosed with Fibromyalgia and later the following year was diagnosed with Hepatitis C, many patients with Hepatitis C suffer with Fibromyalgia.
Who ever stated is Hepatitis C responsible and does it matter is the WRONG approach to take.

Personally if i was you get a blood test for Hepatitis C, even though you may suffer no symptoms of it does not mean you do not have it.
My Fiance caught it 23 years ago through a blood transfusion and the virus in the blood  just lies Dormant for upto 20-30 years.
The longer you leave it the more damage is done to your liver, the longer you leave it the worse the Grading & Staging results will become

Grading = Activity of Virus /  Inflammation of Liver
Staging = Scarring of the Tissue (Damage)

The longer you leave it, the more damaged your liver will become which will only reduce the % chance for the treatment becoming successfull as there is no 100% Guarntee it shall work.

If you have Genotype 1 / 50% chance for the treatment to work!
If you have Genotype 2 or 3  /  75% chance for the treatment to work!

Get a blood test and check it out!

[ladywas]

I was diagnosed with fibro in the early 90's by a local doctor and later confirmed at the Cleveland Clinic in Ohio.  I wasn't tested for Hep C until middle of July, 1999.  I have an aggregate of physical problems involving muscles, joints and spine.

I have no idea if the Hep C is responsible or not.  As someone said in one of the earlier posts does it really matter? Not really!

[carol225]

I too have had joint pain. It started 6 month after combo treatment of 48 weeks.for Hep c.  I reported it to my Hep c consultant and I was refered to Rheumatology. This has been going on now for a couple of years with no firm answer to what might have caused it. If this joint pain had come on over a lenght of time I could understand it maybe wear and tear of the joints, but my problem came on literally overnight. I woke up one morning with pain in all my joints, my hands and feet hurting the most at first. It then moved to my back and legs.Now its in my arms shoulders back and hands the more I try to exercise has they tell me to do the worse it gets. I am at a loss to say what may have caused all this. I think combo theraphy did. But Im no specialist. Only once did they say that they had heard that more info on Hepc combo therapy maybe the cause of joint pain and other problems but it is early days.

jenny225

[kat1962555]

Hi Jonney,
    the Rheumo was the doc that first thought he had Hep C.  My husband is not being treated for the Hepc because his Viral load is 63,000.  They want to test and watch for 6 months for now,.  As for the Rheumo...he didn;t want to prescribe Lyrica unless the HepC test came back negative.   Good luck to you

[jonney4141]

hi there same thing happened to me, was in severe off and on pain for 3 to present years, sometimes worse (could not work) and sometimes bearable but with no energy, finally doc sent me to rhemi who also found out i had hep c and said before he could do anything i had to take care of hep c first. so is the rhemy working with your husband and prescribing pain meds even tho he is taking hep c treatments?

[kat1962555]

Wow!  This website really is a wealth of information.  I just read the first post and was stunned.  My husband has the "burning hips" as soon as he lays down.  The doc didnt think it was frrom herniated disc...he was sent to rheumatologist because he had high levels of rheumo in the blood...and thats when he was told they thought he had hep c...even though a blood test last year showed negative.  Rheumo doc told him to be checked for hep c and if negative he would then prescribe lyrica.  Well...he is positive and I guess we will take it from there.  Good luck to you all.

[alijee]

in jan-2003 i got sick suddenly after drinking. Too much tired and could walk hardly few steps. Was diagnozed of HCV. Remained tired and unable to wald miles  for 6 years.
Then i started Tx in sep-2009 and was declared SVR in sep -2009. Tx made my lay on bed. After ending tx i started recovering and still recovering. But still feel tired when i walk above 2 km.

ali

[franke566]

I was told Sxs would go away after treatment.  Pain free before Tx.  We are told lots of things.  One size doesn't fit all.  Glad your neck is getting better.  Congrats on finishing Tx.

[Ugly14U]

I was told before and during tx that the peg aggravates any existing pain issues, but is not  a "trigger" by itself. It shouldn't cause new pain.I have existing pain as a result of  osteo arthritis in my top 6 vertebra, which is managed with meds. I also have mal-formed healing sites at 12 ribs, a titanium thumb ( really good repair job) left scapula, etc. caused by totaling a race motorcycle in rush hour san diego traffic. We'll see what happens now that I finished Tx three weeks ago. I've already noticed an improvement in the neck issues.

[franke566]

I was told by my Neurologisat that Tx can trigger a host of genetic flaws in some of us.  I wish I would have thought to ask him if it could also trigger genetic pluses!
Maybe this is why I can now work an entire crossword puzzle w/o referring to the dictionary! Or maybe I could all along but was just too lazy to think long enough so maybe the Tx has given me longer periods of concentration.  Besides all the negatives has anyone else experienced an upside to Tx besides the obvious SVR?

[Bulldoggergal]

Had Fibro "diagnosed by a rheumatologist" since my early 20's...not too much trouble with it.  Mother has it too...she's on disability because of it since she was in her late 30's.

I'm now 45.  I've been through 3 unsuccessful treatment attempts.  The Fibro is much worse now...

The women on my father's side of the family also have been diagnosed w/Fibromyalgia.

I personally think the treatment woke up the Fibro...I had the HCV since my early 20's also and it wasn't near as bad until AFTER I did the treatment.

Anything can trigger the Fibro...the interferon or the HepC virus...or the Epstein Barr Virus.

I also have the hip pain but NEVER had it previously...it's only started in the past year or so...is that Fibro?  Does she also have a Myofascial syndrome diagnosis?  The two can go hand in hand....

In simple terms...after 25 years of trying to second guess which came first or which made it worse or what caused what...I finally realized...IT DOESN'T TRULY MATTER!!!

There's nobody to sue, nobody to blame, nobody to hold responsible...it's just a crappy deal that I have to learn to live with.

You will NEVER find a definitive answer.  The only thing I wish people would make sure they do is to get diagnosed correctly by a doctor who specializes in these syndromes (or whatever you want to call them).

So many people say they have Fibro or Chronic Fatigue or Narcolepsy without getting a correct and valid diagnosis.  Once you have that...it's time to treat the symptoms from there...that is ALL YOU CAN DO!!

It is so damn frustrating beyond words...but I've finally found some peace of mind just ACCEPTING what the issues are and moving on from there...I've wasted too much time trying to place the blame.

xoxoxo,
Jennifer

[GSDgirl]

I am taking neurontin.  It has been around forever unlike lyrica.  It seems to be helping.

I have had the pain for a long time but didn't get the formal diagnosis until last month.

The hip pain is a killer along with the trapezious, legs, neck, and so on.......I have done the physical therapy more than once and it makes it worse.

I have heard on this forum and other places that if one is predisposed to a certain (illness, condition or whatever one wants to call it) the treatment will speed up the progression or bring problems to the surface.

You are correct, fibro is overactive nerves.  Good Luck in figuring this out.

Denise