I recommend doing whatever you can to stay in shape.
Even minimal daily excersises and stretching can help
a big deal over time.
I am currently on wk54 and I still do 30-40 min stationary
bike ( I use a pulse watch to stay with a safe heart rate)
I don`t think if I had not kept it up I would be still be able to do that
after 1 year of tx with high doses of Riba.
Also floor excersises and lots of stretching. If I feel too much
strain I ease up , take longer brake in between repitions ect...
Where there is a will there is a way and any movement is better
than nothing.My HgB has been as low as 8.9 at times......
I noticed that if I stop exerising for a week my joints and muscles
become very stiff very quickly. Movement is key to counteract
that problem and also possibly prevent other problems down the road.
Same thing happened to me, and they have reduced my Riba, I had low hgb and high bilirubin, I was dropped 2 pills and I will get my blood draw next week to see if its working, I would say it is. I could hardly hold my arms up when it was low.
let us know what happens with the blood work.
Your description of how you're feeling at this point in your TX sounds pretty much similar to how I reacted to TX. I was able to ride my bicycle 30-50 a day prior to TX, or run 3 miles a day, but within the first couple of weeks of TX, I was barely able to walk to and from my car at work. My hemoglobin took a big drop early in TX and then it hovered around 10 (give or take a point or two) so that I didn't need any rescue drugs. There was no biking for me during TX because I just didn't have the wind or stamina and when I took a very slow walk I had to take my husband with me as a security blanket because I was never sure if I would make it on my own. I did continue working all through TX though.
But...treatment has been over for me for 21 months and I'm back to riding but not back to running. Hip pain prevents the running but I never really loved running anyway...so I have an excuse now...lol.
I think you'll level off and get used to the feeling.
I believe it does make a difference what kind of job you have. I have an office job and a supportive boss and was able to work thru 72 weeks of tx with very few days off. I'm not sure that would have been the case with something more physically demanding - for me anyway. I found my days were pretty well split into 12 hours work/play and 12 hours of sleep, so I had some semblance of a normal life. Key for me was getting enough sleep at night.......
Pam
Let me say that although this is bothersome at this point, in no way have I felt incapacitated. Like I mentioned in my first post I have been very fit for years so this probably feels worse because I am so used to doing anything and everything and people half my age barely keeping up. Everyone reacts differently. With my bloodwork due to be taken on Monday, I will find out pretty quickly what is going on. In the meantime, I've talked to my research nurse who told me to take it easy for the weekend and call the emergency number if anything drastic happens like not being able to catch my breath.
To all - lots of good stuff here because even though we know what it probably is, it is so good to get the encouragement from people that have gone through it or are going through it now. Yeah, it sux but I plan on being UND at 8 weeks with SVR to follow so it will be worth it.
Since I am still learning I do have some questions about all of this. This sounds like the most common tx for HCV, is it the most effective? I am a big girl and I have always had good muscle mass, I am wondering if I will become so weak I will not be able to walk as well. Will I be able to work? I have a desk job so I am thinking that it will be easier for me than it would be for someone with a physical job. Sorry to pose so many questions I'm just scared.
As stated above, it sounds like your hgb has dropped, which is a sign that the Riba levels are good in your blood. Hgb is what carries the oxygen in your red blood cells... low hgb = low oxygen. Muscle cells can't do their job without oxygen... neither can brain cells or any other cells for that matter. It isn't a case of muscle tone right now for you, although you will loose muscle tone as time goes on. That is just the price we have to pay to get rid of HCV. You can get it back when done with tx.
Think about it this way... if your air filter in your car was so dirty that the motor wasn't getting enough air, the motor would loose power, and it wouldn't get any better just because you tried to push it harder. Until the motor gets more air, it isn't going to work right, plain and simple. Mind over matter isn't going to work here. Your body is going through a HUGE battle, so you are allowed to cut it some slack.
Keep your eyes on the end of this road... you'll make it.
Diane
Oh I made a mistake! I'm at Wk 26- looking forward to 48! Lol
Hi. I'm sorry abt ur pain. My skinny legs feel like dead weights. I'm at Wk 48. I did get the horrible calve pain and thigh pain starting abt 8wks. I wear a Butrams patch for it and take Roxicet for breakthru pain. People can say all the technical reasons for it, but fact is you have it. I would lay in bed and wimper all nite until I got on pain meds. The bone and muscle pain really hurts. I soak in a bath every morn just to try to get moving. Doc sez it's Myalgia. I don't care abt reasons why, we all know it's from treatment drugs. I hope ur doc can give u some pain relief. A massage at the mall once a week helps me tremendously. I wanted to add, I don't get on much either. Seems like too many people throw technical or smartypants responses out, when all we want is a caring word. As far as the word," leveling," I thought it meant I wud feel better. People on this site use it loosely. Well, from my point of view, nothing changes, your body just gets used to feeling like crap. I am frustrated with some of the support peeps. Kind, caring, understanding words are all we want while in treatment. Medical jargon the docs give us-not our friends. Well, hopefully you havnt gotton a rash either! Please take care of that pain, it can b debiliting. Your doc can help u get a temp DMV handicap sticker while on tx. That helped me. The scooty carts in Walmart helps too w shopping. Wish all stores had them! Good luck to you and let me know how your doing. You can tell me anything and I won't bash your feelings or make u feel like u have to run to a medical dictionary. I'm with you on this. Take care!
Well can tell a difference between yesterday and today - even weaker overnight- so an email to my research nurse to give them a heads up just in case I should do anything over the weekend. My appointment is Monday
I'm in a trial so I am at the stage of monthly blood draws. The first month was weekly labs and it looked like the neutrophils might be my problem and my hgb held steady. A lot can happen in a month though so we will see. No rescue for the hgb but they will give me neupogen
flcyclist - props to you if you are still biking in the FL heat. I found out early on that this Georgia heat and the meds were not going to get along.
I think that I may have dropped off too much in my activity since I came back from British Columbia where it was 35 degrees cooler and now I'm just a weak slug.
You're probably starting to see a good drop in your hemoglobin, if you haven't already, from the sounds of it. I think it was between week 8-12 for me when I felt noticeably worse. It seems the bigger and the quicker the drop, the worse you feel. Shortness of breath, heart pounding, dry cough, fatigue can all be signs of anemia. I had a nasty ringing in my ears too. Mine continued to get lower until they finally gave me Procrit and that kept me in the game, tx-wise and work-wise. I couldn't have made the haul without it......
How often are you getting labs drawn - weekly, twice a month? You will probably notice a change on your next labs due in a couple days.
Many people keep up some type of exercise throughout tx, but it's really up to each one personally. Trust me, your body will tell you when enough is enough in no uncertain terms!
I did yoga before tx, but was only doing some stretches later in tx because of dizziness. I also did alot of walking but always carry a bottle of water with you and a cell phone just in case. Listen to your body.
Hang in there, Pam
What you're describing sounds very typical for a drop in hemoglobin brought on by the ribavirin. When your hgb drops, you have less oxygen in the blood and you can tire far more easily going up stairs or other things that used to be mild exertion. I would run out of energy and breath by the time I got to the top of the stairs. One time I was telling a joke and I stood up and demonstrated a vigorous shake and had to sit right down again. I was doing pretty good for the first four weeks and then dropped suddenly to 10.3 at Week 4. Next time you get your blood work done, check your hemoglobin level. It's relatively par for the course but you and your doctor should monitor this along with your ANC - your white blood cell Absolute Neutrophil Count - for the duration of treatment to be proactive in the event the HGB or ANC drops too low.
Hope that helps.
Trish
I'm at week 5 this Friday, so just behind you. From the comments and what I've read, the anemia caused by Riba continues to increase up to about 6-8 weeks, then levels off for most. I'd expect at lot of variation, but this is what i'm experiencing and hope it levels soon.
I'm still cycling 3-4 times a week, but not quite the intensity I was at a month ago. I've learned to avoid the fast group rides, and I'm just enjoying getting out to get the blood flowing and muscles burning. Most of the struggle is getting out there. Once I'm rolling all is good.
Hope you feel better and things level off.
Both the Riba and Interferon cause drops in Hemoglobin, White and Red blood counts. These drops will cause bone pain - particularly hips and legs, muscle weakness, breathlessness and other symptoms. If they get low enough, your doctor will have a plan for you.
Geez - it sounds about right and it most likely does have something to do with drops in blood levels. I didn't know how suddenly weak I had become until I went to Yoga and couldn't do a thing even though I have always been so athletic. I really try to make sure I do SOMETHING - even if it's just walking back and forth in the yard and gentle stretches. Anytime I have tried to push myself, I've really paid for it
You will know more after your next labs. Just do what ya can though. Give yourself a break.
Chin up!!
I will be watching for any responses to your question. I started week 4 yesterday and noticed some soreness in my knees today. Walking is one of the few things that really makes me feel better. I just came in from about a one mile walk. So far all Im taking is a Multi and a Vitamin D supplament. I really hope someone here can help you work it out.