Post Harvoni & autoimune isssues

[daca]

On June 22 I finished 12 weeks of treatment with harvoni. In August I started with a cough and very soon I had headaches across my whole head. My scalp is very sore to the touch. Then my glands started hurting and low grade fever settled in. I went to my PCP and she ran many tests on me. Blood test showed things were normal including my liver functions. However my sed rate and my CPR were both elevated. My Dr thought that with these two readings being evaluated there was a chance I had temporal arteries and recommended I get a biopsy done on one of my temple arteries. She also as a precaution she but me on prednisone. The biopsy was negative which was good and I started to taper off the prednisone. However as soon as my taper was finished all of my initial symptoms came back.

I now am back on prednisone and have had CT scan of my head, chest xrays and a myriad of blood tests. All my tests are negative but the headaches, sore scalp, cough and swollen glands still persist. My PCP wants me to see a rheumatologist to see if we can figure what is going on. I called my gasto DR in Boston who treated me with harvoni and he said they are seeing people who are having issues with autoimmune problems who have finished the harvoni treatment.

I don't know what is wrong with me and why my head hurts. It appears that for some reason my arteries in my head are inflamed. I was wondering if anyone has had any symptoms similar to what I have indicated here. I would be very interested in hearing from you.

Thank You,
Bob
   

[katel]

I don't know if this is similar.  What I experienced wasn't too bad.  I had 8 weeks of Harvoni.  Finished treatment on July 30th.  About two weeks ago I got a headache but not exactly a head ache more like pressure.  It lasted for a little more than a week and eventually went away.  I was going to see my doctor but didn't although I still wonder what the cause was because I never had an experience like that before.  Hope you feel better soon.

[KimInTheForest]

Hi Bob, and welcome to the forums! Sorry to hear about your post-treatment problems. I have also had a variety of post-treament problems after my 12 weeks of Harvoni+ribavirin, even though treatment itself seemed like a fairly easy ride.. I had formed the theory that my post-tx issues were auto-immune related, even though I have no history of auto-immune problems. I wonder if the immune system is looking for something to do once the HCV is gone, so it sets to work on the body's own tissues, producing various sorts of inflammatory responses until it settles down and figures out what its new role will be in a post-HCV body. I find it interesting that your gastro in Boston who treated you said they are seeing people who are having issues with autoimmune problems after harvoni treatment.

My post-tx problems these past 6.5 weeks are: fever, fatigue, swollen lymph nodes, big headaches, eyes are super sensitive to light. Feel blah and woozy and unable to do much of anything except go back to bed. But yet it doesn't develop into any "normal" infection like cold or flu. Did not have any of this during treatment (except for swollen lymph nodes one week). Have been checked for a few things, all negative. So my malaise and fever and fatigue are so far a mystery. Began taking supplements of things I was low in - iron, B-12, D.

Whatever is going on in my body now, I am still super stoked to be rid of HCV (assuming my undetected results hold til October, which I believe they will). So that's the important thing in all this. Important to not lose sight of what this is really all about. But also important to share our post-treatment problems since there is so much that is not yet known or reported about these drugs.

best,
kim

[daca]

Hi Kim,
Thanks for the reply. Funny all of the symptoms you are experiencing I have but I also have a very sore scalp and very acute headaches. My treatment was a cake walk with the exception of fatigue and plumbing problems. I had none of the symptoms I am having now during treatment. I am seeing a rheumatologist Monday and I will let you know if I learn anything.

My gastro Dr at Mass General in Boston is very interested in any diagnosis that I may get. Once I have a diagnosis he wants me to contact him as I believe he will want me to see specialist at Mass General.

I knew when I decided to take this treatment there were risks involved but my liver was a stage 3 to 4 for fibrosis and not getting any better. My Dr wanted me on treatment this year in hopes I would not have further complications. I am still undetectable and in October I will have another blood test and I hope I am at SVR.

Sorry to hear about your post treatment issues. Funny we are both having the same symptoms. Hope you feel better.

Bob

[gnatcatcher]

Bob, a good rheumatologist is indeed the detective most likely to crack the case. Although I'm not through treatment, I have had several autoimmune diseases in my life, and I also experienced headache-scalp symptoms similar to what you describe, caused by my being allergic to Zantac. I felt like my entire brain was being squeezed inside of my scalp, and it hurt so much to lay my head on a pillow that I had to try to sleep sitting up.

I was diagnosed with lupus nephritis (my 2nd autoimmune disease) in 1996. When my Hep C was diagnosed in 2002 (by which time I'd had it for almost 31 years), the nephrologist said that finally some things about my lupus made sense. Hep C itself can confuse the heck out of an immune system, and the battle between Harvoni and Hep C seems to confuse the heck out of some immune systems. Why shouldn't the withdrawal of the Harvoni army also confuse some immune systems? From my experience with lupus manifestations (many, varied, and unpredictable), it's like the immune system wants to do something to fix all these inexplicable problems, so it tries things willy-nilly.

Fingers crossed that either your rheumatologist figures it out quickly or s/he is intrigued enough to bring your case to the attention of colleagues across medical disciplines so that, by combining expertise, they can solve these enigmas.

Gnatty

[daca]

Thanks for the kind words. I am seeing a rheumatologist this afternoon and I am hoping he can start the process of figuring out what's causing me to have all these symptoms. Sounds like you have certainly had your share of health issues. It is good for all of us to talk post treatment especially if we are having issues. I will let you know how I make out today. Thanks again!

Bob

[KimInTheForest]

I called my gasto DR in Boston who treated me with harvoni and he said they are seeing people who are having issues with autoimmune problems who have finished the harvoni treatment.

Hi Bob. Did your Gastro have any suggestions about how to lessen these autoimmune problems in the post-Harvoni patients? Or how long they generally last? And I will be eager to to hear how your visit with the rheumatologist goes.

Good luck!

kim

[julu49]

Hi Bob,
I was so shocked to read about your fever and neck problem. I had exactly, well, i think, the same thing. I woke with a low grade fever and my neck front, jaws and back really sore. That progressed to pain in my shoulder blades. I could barely breathe on the in breath. My fevers got higher,up to 102. They didn't last throughout the day until 2 weeks had passed. By that time I was really scared. I could barely breathe and slept most of the time.I also had a horribly painful sore on the roof of my mouth so there went another 10lbs. I only started out at 102 so this is a huge drop for me. I went to the ER and got wonderful care, then on to my doc who did tests for Lupus. I tested positive but she said it wasn't a very good test and they usually went by symptoms. No definitive answer to this. I got some magic mouthwash and within another week, it went away. I still feel it coming on once in awhile. Did you ever really get a diagnosis on this?
Thanks for posting this. I don't feel so all alone. Oh, also this was before I started treatment.
judy

[KimInTheForest]

Hi Judy. Were your problems all post-treatment? If so, how long ago? And is it mostly resolved now? Fevers, etc?

Good luck !
kim

[Snuff HEP]

Kim, for you, I believe you stated + ribavirin in treatment. Not sure if correlation, but during Peg + ribavirin trial years ago, I experienced a auto-immune response. The Doctors and myself believe my occurring psoriatic arthritis directly post that clinical trial was caused by the ribavirin.

One week before they suddenly dropped me early from the clinical trial short as my enzymes had gone highly elevated. I had a early rash appear in the middle of my chest they questioned me about. Never had this rash occurrence before. One week off of clinical I had full blown Psoriasis quickly. Still do all these years later with joint pain.

May not be relative, but I noticed you mentioned combination + ribavirin.

[KimInTheForest]

Kim, for you, I believe you stated + ribavirin in treatment. Not sure if correlation, but during Peg + ribavirin trial years ago, I experienced a auto-immune response. The Doctors and myself believe my occurring psoriatic arthritis directly post that clinical trial was caused by the ribavirin.

One week before they suddenly dropped me early from the clinical trial short as my enzymes had gone highly elevated. I had a early rash appear in the middle of my chest they questioned me about. Never had this rash occurrence before. One week off of clinical I had full blown Psoriasis quickly. Still do all these years later with joint pain.

May not be relative, but I noticed you mentioned combination + ribavirin.

.

Very interesting observation Snuff HEP. Thanks for sharing it.

kim

[julu49]

Hi Kim,
Actually.my fevers started about 1 month before I started Harvoni. My GI said it could have been a Hep C thing but I don't think so. I had too many Lupus symptoms and my ANA was positive. You don't have it do you? I hope not, it's ugly. I still can feel it starting in my jaws again once in awhile but I take Tylenol, drink lots of water and it seems to pass. Whew!
judy

[KimInTheForest]

Hi Kim,
Actually.my fevers started about 1 month before I started Harvoni. My GI said it could have been a Hep C thing but I don't think so. I had too many Lupus symptoms and my ANA was positive. You don't have it do you? I hope not, it's ugly. I still can feel it starting in my jaws again once in awhile but I take Tylenol, drink lots of water and it seems to pass. Whew!
judy

I don't think I have lupus, Judy. As far as I know I don't have a history of any autoimmune issues. What do your jaws feel like when it is starting?

kim

[julu49]

Whew! I hope it's not Lupus. I have enough going on that I don't need any more challenges right now.
When I feel like it's coming back? It's hard to explain but it's like a background pain in my jaws and neck. I started drinking the water because I know that water flushes the liver, just in case it wasn't lupus. It seems to work and I haven't had too many of these little "reminders" for about a week now. I'm at week 5 if 12 with Harvoni.
Do you have lupus?

[KimInTheForest]

As far as I know I don't have lupus, Judy. And I have never had any auto-immune issues prior to this post treatment malaise I am in (going on 7 weeks now) - fever, fatigue, no apparent pathogen that any doctor can find, no identifiable "illness" like cold or flu manifesting at any point. I am hoping if I am just patient with my body, it will all settle down and find it's way back to health.

cheers,
kim

[julu49]

Hi Kim,
I'm sorry that you are having issues post treatment. It's so scary when you can't get a diagnosis and you feel so sick. I'm pretty much doing the same as you and just waiting it out. I don't understand how we can get these fevers and feel so awful, yet there is no fix, but I'm with you, just waiting and hoping we will get stronger and all of this will be a distant memory.
Take Care
judy

[daca]

Hi Kim & All,

I got lucky and was able to see my rheumatologist Friday as they had a cancelation. I was glad because I was really feeling bad. The DR I saw came highly recommended. He was very sharp and had a great demeanor. He had all my records from PCP including the biopsy I had on my temple artery. He reviewed my records and without hesitation he said I definitely had Temporal Arteritis (GSA). I asked him how can that be when my biopsy was negative. He said they see negative biopsies all the time because the only artery they can get to may not be affected. He said I had all the classic symptoms for GSA and my records showed I responded to the prednisone I was previously on. Not the diagnosis I was hoping for. I asked him if this could have been triggered by Harvoni and he adamantly said no that there was no connection. He said I finished Harvoni on June 22 and I didn't get these symptoms until August 15. He thought that was to much time if Harvoni was the trigger. He said no one knows what causes this disease in older people. IThings like stress can trigger it. So sounds like Harvoni is off yhe hook for now but I am pondering what he said because it's to coincidental for me. I intend to talk with my gastro Dr at Mass General.

He put me on a high dose of prednisone for about 2 months. We will see how this all plays out. I will keep you informed if I learn anything different. Thanks to all of you for your replies and information. I do think it is important we talk about post treatment because there seems to be to many people who are having issues. Good health to all of you.

Bob

[gnatcatcher]

Bob, perhaps one reason your rheumatologist was adamant that Harvoni was very unlikely to be the direct cause is that Harvoni has a very short half life. Your system clears out nearly all of it within a few days. Now to my way of thinking, that doesn't rule out Harvoni as an indirect cause, in the sense that the battle between Harvoni and Hep C is indeed stressful, and that can cause your immune system to get so bewildered, it can do peculiar things. I'll be interested to read your report of what your gastroenterologist has to say.

Sorry you have yet another medical issue to deal with, but glad prednisone seems to be taking care of it. Good health to you, too.

Gnatty

[KimInTheForest]

Thanks Bob for the report-back on your visit with the rheumatologist.

kim

[julu49]

Hi Bob,
I'm glad you finally got your diagnosis. Now you can focus on getting better. Thanks so much for posting your journey with ( Temporal Artery)?. I have never heard of it so I'm going to do some fun research. Since I had my symptoms prior to Harvoni treatment, I'm pretty sure it wasn't the drug that caused it but our compromised immune systems from the HepC.
Get Wee,
julu

[julu49]

This is the first site I came across, very clear and simple
http://www.vasculitisfoundation.org/education/forms/giant-cell-arteritis/

[Mugwump]

If you have had HCV then chances are the virus over the years did things to your immune system. The way I think of it is this. The virus itself relies upon a host therefore in nature it is a parasite. And the nature of most successful parasites is not to quickly kill the host. And in some ways even become beneficial although the cost of having this particular infection certainly out strips any possible benefit.

This is not the case with some more advanced organisms like some helper bacteria which have become completely symbiotic.

The HCV virus only survives long term precisely because it does not quickly kill by and large. Perhaps it even stimulates the immune system to make the host more healthy and resistant to some other diseases. But this stimulation of the immune system only goes so far and can run amok in some individuals.

In my case I am fairly certain that HCV infection caused my immune system to attack my thyroid gland early in life. BUT my mother, who to the best of my knowledge did not have HCV  and died in 1985 also had problems with her thyroid functions. So perhaps the chances of developing thyroid immunity disease problems is greater in the population that has a familial history of thyroid problems.

So autoimmune diseases could be effected by years of HCV infection. BUT there is a problem with this assumption. And that is precisely the word ASSUMPTION, we have no scientific proof, we only have what amounts to anecdotal evidence that HCV infection partially causes autoimmune problems.

Until the mechanisms of how HCV effects the immune system are better understood we can only guess as to how and what damage has actually happened due to the infection.

Again I cannot see how Harvoni treatment could be a cause of autoimmune diseases. BUT I can understand that suddenly removing HCV from ones system without notice might cause some changes to the immune system in individuals that should be studied on a clinical level! 

Eric

[julu49]

Hi Eric,
I like your message and love the fish lesson.
judy