9 1/2 months post, & going down hill

[timothy141]

There are a few here who know of me and my tx. In short I completed 48 weeks of interferon and ribavirin. I guess I really am not superman. I always believed I could just push through tx and after tx sx would go away. And for a short time it work.
But over the course of the last month and a half I feel as if I am once again in the middle of tx. Meaning, to start with I have no appetite, well that's not true I am starving but can't eat, can't get the food past my mouth, so I am back to drinking supplements.
My body feels much like it did on tx, ache's and pains but the worst are my wrists and knees, and that is really bad at first waking. I have no pain killers here so this morning I forced myself to go pick up some Alive. Will see how that works.  

[otterwatcher]

yes I eliminated gluten and dairy a few years ago-I read that both hcv and treatment are linked with gluten intolerance.I rarely eat meat and have always steered clear of processed foods.I have definitely developed
new allergies to all sorts of things. Do hope it helps and you find some relief from the inflammation.

[dustbear]

interestingly I was just tested for food sensitivities and I am now highly sensitive to gluten, dairy, beef, pork and lamb. I don't know what 'minor issues' you had but my doctor seems to think that my immune system took a hit while on tx and it can change the anti-bodies in your blood.

I need to stay away from these foods for 6 months then go for retesting. I had this test 8 years ago and it did not show any of this. The lady at my health food store says certain immunoglobulins (anti-bodies) have a memory so if you eliminate the food and then reintroduce it later, the body may not react to it.

I have a lot of inflammation so I'm hoping this will help.

[otterwatcher]

please look up chronic fatigue syndrome as there are an awful lot of similarities with post interferon syndrome. It's Really Important to pace yourself and not to overdo it on the good days-listen hard to your body and stop before you get too tired-this may take a while to learn! I'm sure pushing myself has contributed to my non recovery.I have just slept for 8 days,only half waking for dinner and cups of tea-thank goodness for my wonderful husband.The jet lag type fatigue is the worst symptom,the lack of joy anxiety and the apathy are awful-the pain can be controlled. I'm sure we all take comfort in the knowledge that someone else out there knows exactly how we feel. I do feel sorry for the ME/CFS community tho-at least we have something to blame.

[susan400]

Please explain, what kind of systemic enzymes?

[dustbear]

that is exactly what I am experiencing. The good days last longer but then once a week now I am completely exhausted.  After 3 days of working, and that's just sitting in front of a computer, I'm exhausted. I sleep 10-12 hours on the weekend. After 3-5 hours of trying to do laundry and dishes etc I am ready for bed. I do what I can and then take a nap. Then I get 3 good days. go figure.

[Dee1956]

Hi I wanted to come back to say that during my recovery from tx; after the first 6 months I considered that to be my starting point as the Riba can stay in your system for up to 6 months....
I would have a good day followed by two bad, then it began to be for every two good days I would have a bad day and so on.  I did have a bad habit of taking the good days and trying to do everything I could not do on the bad days.  That will add to the bad days as your body is not used to the extra activity.

I think that is what you are experiencing.  You are still very new to recovery, please try to hang in there, continue to drink water, that is essential to flush the meds as well as to help your liver work better.

I saw where you were feeling a bit better so I think that it will just be some good some bad.

Take care, Dee

[dustbear]

Hi Timothy. I had no appetite for a good 4-5 months after then it came back so I hope yours does too. I could not drink those supplements, gave me instant diarrhea, too much sugar in them. Try some grainy bread if possible to get some fibre like otterwatcher mentioned. Also try eating some greek yogort for the fat.  Just a small amount is good.

I am still stiff in the hip joints and feet. If I move too much, or sit too long it hurts to walk, and I feel very stiff.  It's a balancing act. If I have a lot of pain I take Diclofenac Sodium with great results and no drowsy side effects. I did take tumeric from the health food store. I did see tremendous results on my CK muscle enzyme tests but then I stopped the tumeric. I think I may take it again if the test results don't improve. Aleve is too hard on my stomach, esp if empty so I don't take that either. Tylenol is banned from my house!

As for drinking, I was barely a social drinker. My naturopathic doctor said not to drink even though I'm "cured" of hep C, but my liver is still healing. He thinks it will take a year to heal.

I am thinking of you so take care and be strong my friend.

[timothy141]

Thank you for your input. And I do still read...feeling better. It is what my new normal looks like, and that's okay with me.

[otterwatcher]

me neither! not so much the treatment but the post treatment experience. it's good to know we're not on our own with these side effects,

[Dee1956]

Thank you so much for your response.  I appreciate everyone's in put, we can learn from each other
There are times I will read something and it jogs my memory about something else I have read and from that one thing I will learn so much more.  This forum has been invaluable for me.

I would not have made it through without everyone here

[otterwatcher]

hi Tim,I am 8 years post treatment and still suffering the muscle/joint pain and extreme fatigue.I also went downhill about 3 moths post tx despite starting to feel better initially. Was diagnosed with post viral fatigue syndrome by my GP and finally with Post Interferon Syndrome by my consultant after 5 years had elapsed-as Dee says.these drugs can take a long time to leave your system..I also take coenzyme q10 and a good multivit/mineral and have eliminated gluten and dairy from my diet which has helped alleviate some minor issues.I have problems with appetite too but I try to eat one healthy meal a day and eat plenty of seeds,nuts and fruit if I don't.,I find those food supplement drinks are way too calorific and contain no proper fibre.If you're not eating properly you will not get as well as quickly as you could do old bean!

[Dee1956]

Hey there! You got some really good responses.  I wanted to remind you that the riba can take up to 6 months to leave your body so that you are new to recovery.
Like Desrt suggested I have taken the NADH, Coq10, other supplements to hopefully help me.

DWBH had a very good thought as well.  You are not alone in this struggle as you can see by the responses
My best, Dee

[penn1023]

I am one of those people who treated with IFN in the 90's and have had nothing but trouble since then. I have autoimmune markers, feel fatigue all the time and have develped electrical heart problems. Please go see a rheumatologist. They will do a truckload of labs and figure out how to treat you.
I am waiting for Gilead combo. My rheumy says some of my AI issues might go away after I clear HCV .

[dontworry_behappy1]

I also. won't be taking Aleve either.   Take care of that liver.

[dontworry_behappy1]

I just had a blood test that stated I had toxic levels of ethanol in my blood.  Interesting because I drink socially a few beers and a few glasses of wine.
Apparently,  drinking after hepatitis C treatment has made my ability to metabolize alcohol difficult.  I was stage 2 when I treated and never had problems with alcohol.  I had drank socially all my life.  In fact right up to the time I treated because I didn't know I had hepatitis C.  

There has been much discussion here if it's alright to drink after treatment.
I also remember your struggles with alcohol.  I just want to share that I stopped drinking any alcohol as soon as I found this out.  You shouldn't drink!
and realize that 48 weeks of heavy drug treatment do not only cure your hepatitis C.....it had a taxing effect on your liver.  

The results of this inability to metabolize alcohol after treatment contributed to a much serious event that effected my heart.  Remember this treatment effects your muscles and your heart is one big muscle.  

Take the time to see your doctor and start really taking care of that compromised liver from Hep c treatment.  Stay on top of your health and make sure you have a complete physical every year......  I will never socially drink again.    I advise you to do the same.

Best to you
  

[Livelife777]

I'm so sorry to hear of all the debilitating issues you are now faced with post Tx.  In the world of current medicine, we are sitting ducks and willing participants in our own journey to wellness.  I believe this happens more often then most think as the cure at times is worse then the disease.  I, like
all of you, know what that's about 1st hand.  Having been a cancer survivor, did 1 chemo regimen that gave me another cancer diagnosis 10 years later
in a different region but where radiation was also used.  Have now peripheral nueropathy, tendon joint issues, RA, heart issues on and on and on.  Guess the ? remains, was the cure worth the compromise.
It's really tho a damn shame when we are not truly enlightened to what the repercussions would be.  In the very least we should have been informed to the possibilities of our particular outcomes.  Personally, I would not be here so guess it was the right decision.  In retrospect may have done things different to facilitate a different result.   Wish there was a way to make your load lighter, but we can only try to accept that which we are now given.
Take care and be well
...Kim..

[lmca49]

Hi Tim
I am 15 years past treatment..and a primitive version
it was back then. It never came back..so far anyway..but
the overall damage to my health has never improved
either. I still have knee and joint issues..neuropathy..
(and do not have diabetes) terrible headaches..
all started during tx..and never improved. I have developed heart
disease..had cancer..have thyroid and parathyroid tumors..
Have asked myself many times over the years..which is worse for
overall health and longevity..the disease or the
treatment?


.

[desrt]

Rheumatologist is a good idea. There are a lot of auto-immune things IFN can trigger and you need an expert diagnosis. I had a similar pattern of 'bouncing back to normal' with problems later, though mine manifested as both pain and 'metabolic syndrome'. Best non-Rx supplements I can suggest are CoQ10 and NAC. Aleve is good stuff - my chiropractor swears by it, though ibuprofen works just as well for me.
Good luck and take care.

[Dee1956]

Hi, just a stab in the dark.  I hope that is ok.  I have had many tendon problems and have started to take systemic enzymes to try to reduce any inflammation in my body which might contribute to the pain I am having.  I have had tendon problems in my foot, frozen shoulder, now bursitis.  Like you I am searching.  I  realize that I am getting older and I am trying to help myself any way that I can.  Since starting the systemic enzymes I am not as stiff as I was so I hope I am going in the right direction


http://www.webmd.com/a-to-z-guides/myositis-symptoms-treatments-prognosis

[Dee1956]

Hi there! I am really sorry to hear this Tim.  I have not been on here much as I am suffering from shoulder bursitis but I came on here to see that Dustbear has been diagnosed with drug induced Myosisitis (sp?) which can be misdiagnosed as myopathy.  She has posted on the Myosisitis page.  
I did not know what that was so looked it up on WebMD and it says that Interferon and other drugs can cause this.  It is a muscle disorder that is often overlooked.
Have you been seen by a Rheumotologist?  I am asking because I remember Pooh suggesting that others try going for testing as this type of doctor can do more testing than a GP.  Not to say your GP can't do it..
I have not really looked into this much but I will, in the mean time I wanted to try to give you a place to look.
I will get the link, and come back.
Take Care