Myositis Community
49 Members
5249831 tn?1407713726

Drug-induced Myositis & Interstitial Lung Disease from HepC treatment

I was in the hepc forum on this site and I am glad Myositis is here.

I was just diagnosed with myositis and interstitial lung disease caused from the hepc drugs called interferon and ribavirin. Treatment was stopped at 45/48 weeks one month ago.

The myositis got so bad I couldn't lift my arms for 4 days. Hips, legs, shoulders, arms and especially my neck are stiff with pain. I cannot walk around the block! My neck cannot support my head so I use a travel pillow when sitting on the couch.

I have tried ibuprofen, naproxen, and oxycodone (5mg) but they just mask the pain not heal. No amount of massage therapy, hot/cold packs, epsom salt baths, acupuncture or stretching does a damn thing! I wake up every day in pain.

The CK muscle enzyme test results since late November were 1495, 1200, 800 & today 1575 (should be <140).           The docs say the numbers will drop but they are not. I was taken off the drugs Nov 25.

I am not sure what to expect, what treatment or other tests there are, and how long a time frame before this should subside. This is not permanent is it?

If anyone has any advice, I am not sure what to do other than get the enzymes checked again (how often).
Do I rely on my hepatologist or should I see a rheumatologist?
6 Responses
7592732 tn?1407252265
So sorry to hear of your diagnoses !  Have your physicians started you on any steriods?,   Corticosteroids slow the body's immune system and stop the
inflammatory attack on muscle, skin and other body systems. These medicines control the inflammation, ease pain, and increase muscle strength.

Doctors tend to prescribe relatively high doses and decrease the dose slowly as the symptoms improve. Doses depend on patient's weight and disease severity.  Cyclophosphamide (oral or intravenous) and cyclosporine (oral) are more commonly used in cases where patients exhibit lung complications like interstitial lung disease (ILD) as these are more potent immunosuppressants.
I hope you look further into your diagnoses, Myositis isn't something you take lightly, there is no cure yet for these,  one of my daughters was diagnoses with the juvenile form  JUVENILE POLYMYOSITIS.  

5249831 tn?1407713726
The doctors want to wait 6 months to see if the inflammation subsides on its own. Drug induced myositis is the only type that can be cured from my own research. I am happy abt that! But my hepa doc says the only way to confirm myositis is with a muscle biopsy, the only thing he can confirm from the ck test is that the muscles are inflammed. You are right, myositis is not something to take lightly.
The steroids that were mentioned are called Prednisone. I had some years ago, and dont like the idea of taking any more drugs esp after the hepc drugs I was on. I will gladly wait another 3 months to see if the inflammation goes down on its own. Have you taken the steroids you mention? They did say high doses for a short period of time. I hear they can affect your moods.I will keep you posted. Going for ck test early March, then a consult with a rheumatologist.
7592732 tn?1407252265
Yes, Prednisone, is the steriod, and yes you do get mood swings and wt gain.   My daughter was 17 when she received her diagnoses, after several medical appointments, (appointments up to a year)...... her symptoms did not subside.  Kept getting worse.

You said, " wait 6 months for symptoms to subside, are you seeing/feeling any better since you have stopped your meds?   My daughter, before her diagnoses, wt was130, and a varsity soccer player, & long distance runner.  When we received her finale diagnoses, her wt was 92, and had gotten to crawling, needed help holding up her head, getting dressed......
Prednisone 60 mg was started, muscle biopsy confirmed POLYMYOSITIS.  Most blood work was normal.  She stayed on prednisone 60 mg for almost 9 months, along with chemo drugs and IVIG.  Then she started to respond to meds, when prednisone was decreased we had to go slowly, started at 2 month interval(55mg for 2 months) then 1 month unless she started to flair.  From the date she was diagnosed was 17 months, never came off prednisone, chemo meds changed twice  and was still receiving IVIG.  

Our daughter was only 19 when this disease took her from us.  Don't keep waiting for symptoms to subside,  you can always be placed on lower dosage of steriods  to help reduce the inflammation, along with stopping the meds that induced your symptoms.  
Take care & hope to hear back from you soon.  
5249831 tn?1407713726
Oh my goodness. My heart sank reading about your daughter and your struggles. I am so sorry to hear this and thank you for sharing with me.

I am feeling better slowly; more so in the upper body than the lower. I am doing mild stretches, going to physio (first day today), and now water walking in the pool. I am very stiff after sitting for periods of time. A lot of the muscle pain is gone. I have stiff joints and if I do too much it hurts and if I do nothing and move it hurts.

Next week I go for the muscle enzyme test, followed by a visit to the rheumatologist. I have to push for all of this as no one is familiar with myositis. I have to get a muscle biopsy to confirm the myositis diagnosis before they will put me on steroids.

Thankfully, I am seeing positive results. Thank you for your heartfelt concern. I feel less alone now. It was nice of you to respond to my post.
I will let you know how it goes.
7592732 tn?1407252265
sorry I haven't posted, March is a hard month, angel anniversary.  how are you doing?  I wanted to get back to you, (btw, a muscle biopsy isn't the only way)  for a diagnoses you must meet certain criteria.  seek out "The Myositis Association" on the web.  please let me know how you are doing.

5249831 tn?1407713726
Good news! I am improving and almost back to normal. Muscle stiffness is limited to my hips. Physio helped somewhat, and one treatment of acupuncture worked wonders. I just started swimming and the breast stroke leg kick is bringing the flexibility back to my hips. It will probably take another 2-3 months for my muscle enzymes to show normal. I am at 310 and need to get down below 140. I am grateful for your help and know you care deeply. I did not get the biopsy as things improved on their own, it was just a matter of time. I am very lucky it turned out this way. my heart felt thanks to you for your support and I think of you often.  
Have an Answer?
Didn't find the answer you were looking for?
Ask a question
Popular Resources
For people with Obsessive-Compulsive Disorder (OCD), the COVID-19 pandemic can be particularly challenging.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.
In You Can Prevent a Stroke, Dr. Joshua Yamamoto and Dr. Kristin Thomas help us understand what we can do to prevent a stroke.