POST TREATMENT BLUES

[toryw]

Hi everyone, I am 54 and have just finished (almost 3 weeks) of 48 weeks of treatment. I had a lot of physical side effects but no real emotional ones accept getting a bit flat at times. My heamoglobin stayed low from about 6 weeks into the course, so I was breathless after little exercise even very short walks but I swam a lot which I loved and still walked a bit. My problem is that my Hb levels are still low (85), I feel terrible, quite emotional and no energy. My Hb levels stayed around this level for almost the whole treatment and I just want to feel like my old self again.

They never lowered the dose during my course of treatment and they never addressed my anaemia, when I check website information it states that the ribavrin should be halved if your levels fall below 90. The nurse just said she has other patients with lower levels, basically my concerns were always dismissed. I also had chronic diarrhea throughout the whole course and a dry cough started almost immediatly but has now gotten worse rather than show signs of abatement.

When do your blood levels pick up, I am teary, my jaw still aches, it can't be good for your heart to have sustained low levels like this for so long. I just want my vitality back, do we get it back after the treatment? I feel like a hypochondriac it's hard for my family to understand how I feel as I was quite a trooper during the Tx and now I feel worse. I guess I just want some support from people who have gone through it and who have also had some problems post tx.
Cheers

[uriah1]

I am really glad to read all these posts.  I am 5 weeks post tx and still struggling with muscle soreness, fatigue, and  depression.  I know it'll take time.  I had a medium good day a couple of weeks ago :)  It feels good to know others have post tx blues and that I'm not alone in this...
thank you everyone

[toryw]

Thanks everything has changed! I look at the first messages here on this post I made and I was so miserable and felt so unwell but not anymore, I have spent 5 days in the garden now, it was so neglected but it is looking very happy again, my wattles are about to flower which will be beautiful. I'm not over doing it, I am having lots of rests but probably managing about 4 hours a day, there is still lots to do out the back but the street view is respectable now and very rewarding. There is life after treatment after all.
I hope you get to swim in your pool as well as pick the leaves up, I swam throughout the tx and it never tired me too much.

Good luck Idyllic and to everyone here on the forums struggling through the terrible side effects of the tx, I wish everyone a full recovery.

[Idyllic]

You sound completely different. So much better. Rejuvenating your interest in gardening is such a good sign. It keeps you moving and focused on the here and now yet believing in the future. I just don't have the energy or even desire to take care of my indoor plants let alone my "garden." But hey - I did rake the leaves from the bottom of the pool. Or most of them, that is....
Anyway, it's clear you have made some huge steps since your last post and it is very encouraging to see!

[BoceprevirGal]

Ahh, these big fluffy cats are very comforting, aren't they?
    I have a friend, who lives in Australia, as well. She has come to visit us twice now : )  That is great, that you were able to swim, during TX....I have been afraid to exercise, so far, but next month, we do have a local swimming pool, that I may hit up, in the early evening.
   I have heard that the sun may cause a worse burn, when on the TX, so I have been cautious, so far~ Cheers!

[toryw]

Yes the garden itself is such wonderful therapy, I hope you get your hand dirty in there as soon as you can. Even though my HGB is still low just a few points makes such a difference to how I feel emotionally and physically.
I love your ***** cat she looks quite a lot like my Simba, he had a nightmare this morning poor boy but once he woke up he quickly forgot about whatever was chasing him in his sleep :-)

[BoceprevirGal]

Aha, that is great that your HGB is climbing back up!  The few times in my life, where I felt really depressed, I DID use apple cider-vinegar, that was very smart/intuitional, to remember it. I always keep an organic bottle around, and some raw honey. I also enjoyed squirting a lemon into the whole concoction, yum yum, very warming : )
   I cant wait until my HGB gets a little higher, so I can weed my garden, onward, and upward, then!

[toryw]

I am feeling a lot better everyone!

I think the apple cider vinegar with honey and hot water has done the trick. I had a blood test yesterday and just called the nurse to get my results my HGB has gone from 85 up to 90 and my platelets have jumped from 278 to 486!

I felt so good on the weekend I worked in my much neglected garden, I trimmed, weeded, mowed, raked, whipper snipped, and transpanted and sweated through the whole weekend and it felt great. I am keeping very hydrated I am not teary any more, I am actually starting to feel like my old self and things are looking up.

I do recommend the apple cider vinegar, it has helped a lot, a good quality organic one of course. I cant thank everyone enough for the support I have recieved here I feel I have found a soft place to land when things do get tough as well as a great place for terrific advice and sharing.

Today I will work in the garden again, I have a tree which needs some of its branched trimmed and it will open it up to more light which I'm sure it will appreciate.
What a difference a week makes :^) to everyone who might be suffering post treatment blues Onwards and Upwards there is light at the end of the tunnel. I felt so sick just days ago but now I am almost my old self. Do try the cider vinegar, and do stay on this forum for support and empathy.

Thankyou everyone, if I can be of help to others here I will do my best to offer the same support that I have recieved. I know I might still feel a little unwell at times as its still only a few weeks since I finished but I know that I am getting my vitality back and you will too.

Cheers from Tory

[Advocate1955]

My husband is still in triple tx (week 28/48) so I can't really say how his recovery will be from this one, but after his past two treatments, he felt better after about 2 months.  It took awhile for his counts to come back up, and for some of the fatigue to ease up.  He was feeling more like himself by about 2 months after ending treatment.  
Advocate1955

[screaming48]

it has been almost 8 weeks for me and finally the last week or so I am starting not to cry over everything, hang on it will get better.

grandmajane420 thanks for telling about the pressure in the throat from thyroid, mine went bad a month into tx, been off tx for almost 8 weeks now, and the pressure was bothering me like a tight turtle neck. glad to know that the thyroid does that.

[Grandmajane420]

My Dr. said that in the triple tx they were letting hgb levels drop well below 80 before considering to treat it. Some "speculation" that may have been related to all the relapsers in the dbl tx. I'm on week 12 of tx this time. My hgb started to drop and I added eating raisins a few times a week and my levels went up a bit. Getting your nutrition from food and natural sources is the best you can do and is quicker absorbed for faster results. Do some research on which foods will help your conditions. Do some yoga breathing exercises to help your lungs, swimming and the steam room  (for sweating) seemed to really help me as well on my last recovery.
Some people have had trouble with the thyroid which will cause pressure in the throat, and my Dr said blood pressure can have some affects on the base of your throat too.
I am fortunate to have 2 Dr. to consult, My GP and my GI. They are both tuned in to what can happen and watch me closely.
It takes time to recover from such abuse on tx. Hang in there. :)
One Day at a Time; One Step at a Time.
Jane

[Dee1956]

Tory I think that Hashoil is right, I have been walking every day and sweating to try to help myself get better faster.  If nothing else it has helped with my balance issues I had during tx.  Keep drinking lots of water, eat lots of fruits and veggies.
I have been trying everything.  It has been close to 8 weeks for me and I am slowly getting better.  I am encouraged by others posts who finished  before I did.  I wish you the very best

Oh, I had throat pain after treating, not a sore throat but like a muscle was pulled, perhaps that could affect your jaw, what did your doc say?

@Idyllic, your post was wonderful, it helped me very much, thank you.

[toryw]

I had a weird urge to buy apple cider vinegar, I haven't used it for years but as a kid I used to drink it with hot water and honey. So I bought some and it actually helps me to sweat and seems to be a real tonic. I feel slightly better today and am about to go for a walk which I haven't felt well enough to do for about 10 days so thanks again everyone.
The thought of Riba having one hell of a half life is very scary. I think the sweating and flushing is the answer.

[fretboard]

I am teary,
-----------------------------------------------------
Tx is grueling and depressing for some people.  Some people have never been depressed in their life so they find it extremely hard to believe that they could be depressed.  Just to put everything to rest and maybe feel alot better, I suggest getting on an anti-deppressant.  It's not gonna hurt anything and it may help.  Disclaimer:  Check with your doctor before taking any and all medications.  You may even want to see a therapist just to make sure since your doctor seems to be stuck in a "one size fits all" mode.  Another thing hashoil said is to sweat it out.  You gotta sweat it out with anything you do if you think about it.  Back in my party days, I was constantly sweating sh*! out to feel better.lol  good luck with the days ahead!!  

[ginmex]

I started taking the tx in January. I am taking all three meds.  I had to really insist that my doctor give me something because I knew I was anemic.  I fell so weak I can not take the medicine.  I  have to work full time still.  I have pets and grandkids and a house. I am cutting back but how much can you cut back.  I have taken 2 doses of Procrit. Hopefully my red blood cells will increase.  How does one get the white blood cells up.  This is tough.  I did not stop taking the meds but I did take less for 5 days. I started taking all 3 from the beginninng.  The doctor did not tell me to start with the Ribo and Peg.  the to do the victrelis.  Oh well this is tough.  

[toryw]

Thanks everyone, I feel very glad to have found this forum, your warmth and support has helped me to feel much more positive about getting back to my old self.
I hope you have all have a very happy Easter, it's Monday here in Australia, we had some wild weather over the Easter break but today is sparkling with a hint of winter, the beach looks very inviting and the flame robins have come down from the forest to spend the cooler months on the coast, dear little things. Living in such a pretty place with so much wildlife really helped me through the tx as I live alone.
Tory xxx

[beeblessed]

Hi Tory,

The wait is hard, I agree because I am going through it right now too.  It took me about 2 weeks (I think) before I felt noticeably different/better.  But there are still bad days and (thankfully) more good days.  Just as everybody's body responds differently to tx, I guess the same holds true for post tx.  I truly wished you had found this forum when you first started.  You would have been able to see a pattern of people with doctor's who seemed too busy or quacks.  They were often encouraged to seek other doctors.  There are protocols for med reductions and increases, but there are also protocols on keeping you well.  Otherwise, there would be no reason for the monthly check ups.  Just labs would do.


Wishing the best for you and hoping you find a post-tx compassionate doctor.  They're out there!

Bee

[rivll]

I really love your response to this post. It was compassionate and sensible.
Thank you.

[brianmo]

Yes, we all need to hear this, thank you for doing this post. I am on day three of no drugs, shots and wish I felt better but everyone keeps telling me to take it easy, its hard. This a.m was the first morning I wanted and felt good about getting out of bed.  I did not feel "toxic" although I know I still am.  I am doing everything I read, good eating, light exercise, swimming  is good. Wish I could run but Hgb was 9.2 most of treatment and my guess is its still there. I went out this a.m. and did some yard work and nearly passed out trying to push the wheel barrell!  Good luck and hang in there. You have been through a major physical, mental and emotional change.  Good job on staying with threatment, you did good.

See another doctor.

[Dee1956]

Hi there I agree with above posters.  I finished tx on 2/11, it takes time for any one to feel better after such a grueling tx.  I did not know that anemia could make a person feel depressed however it does make sense, my HGB started at 14.8 and dropped to 9.6
My doctor would not give me rescue drugs even though he had said he would at the beginning.  I felt as if my doc did not really know anything about the Incivek or how it would affect me.  Please do not let your doctors attitude bother you.  I think he doesn't know what to do so does nothing.  Too afraid to tell you he just doesn't know.  When I treated the first time it took quite a while for my numbers to normalize.  This time it took about 6 weeks however my platelets are still very low.  From what I have been told it takes 3 to 6 months to feel better.  The new treatments are very rough on the body with people getting rashes, infections, pneumonia, being hospitalized, etc.  I hope this post is making some sense.  Basically I wanted to say you are not alone.  We are all, in our own way trying to recover.  Walking is a good idea to try to get everything moving, eating a liver friendly diet would be good.  At one point, when I could not get any help from my doctor I wrote to Dr Dietrich,here on the forum paid $25,  asked for advice, he gave me a great answer, made all the difference to me
Wishing you the best, hang in there
Dee

[streamline569]

Hi Toryw. You are not the only one trying to figure this all out. I finished the end of Dec. and was non detectible for the virus from the 2nd week of treatment until one month post. Waiting for June to get my 6 month clearance. I to have not felt well for the last three months. The one thing I noticed was that my hgb was at 10.8 one month after stopping treatment and depression kept me sleeping still. I am now starting to realize that it doesn't stop with treatment but just starts. We now have to pull ourselves together and get on with life and I do fell it will happen with time. Our bodies and minds have been through a lot. You are not alone with your feelings and it's good to talk to others as we regain our health again. One thing I am sure about is we will be feeling better soon. Hang in there......PS I don't think doctors really know what do to us so don't feel bad about the way you doctor has been treating you....Hugs xx

[JasmineT]

Hi Tory, I had a pain in my chest that went away post tx wk3, was not my heart but no one ever figured out what it was.  Then around week 5 went to the doc thinking my asthma was bad, turned out to be bronchitis.  Lungs were very full.  Tx made me feel so bad for so long, didn't know I was sick.

I think getting a second opinion is a very good idea.  Just to be sure.

A massage sounds lovely.  So does a sauna although I don't think I could have handled that week 3 post.  I started doing some Detox yoga and self lymphatic massage (google and youtube) post tx.  Certainly didn't hurt, may have helped.

I hope you are feeling better soon and hope the doctor can help you feel better quicker.  My energy was noticeably better by week 6 and week 8, almost full speed.  It takes time and your numbers are lower than mine ever were.  

[toryw]

thanks again everyone, I think I need to change GP I went 3 days ago very teary, which made me feel very embarassed, but I felt so unwell, he never even offered me a tissue, took my blood pressure 90/60 and just said it's due to to treatment, I told him the hospital Hb results and he never offered to do more. He rushed me out the door in less than 5 minutes and this is how he has treated me throughout. In such a small town where I live he is the only doctor but after his bad attitude the other day I think it's worth travelling a bit further.
Thanks for the support, I really needed it, did anyone ever get a really sore throat but not like a sore throat, I have had throbbing pains at the base of my throat for a week, hurts most when I lay down, Doc was not interested

[Idyllic]

Wow. That's the thing: you really were such a trooper during treatment. Low Hgb, no rescue drugs, no dose adjustments and remaining actually quite functional. Your body, esteem and spirit have been through the war and in a way it's like none of this has hit you since you just kept one foot in front of the other and kept going. For 48 weeks.

If your blood levels are not restored by the time other users and the literature suggest that it might be then you may have to be a bit assertive with the medical staff you are seeing. I am a little concerned about the sore jaw and being a little teary. No, I am not going to come and say you are depressed: seek meds and help and all that. But it does seem as if you could use a way to let out the tremendous strain and tension you have been through.

I am just spit balling here but perhaps being a little active in the forum or staying connected to other folks who have been through the same experience you have might help bring a little peace of mind. It just sounds like you went through this alone with a stiff upper lip and it is time to feel now. It is time to demand medical attention if you do not feel better soon. In the mean time I say keep up with your walks and doing the things that brought you peace and/or made you feel alive.

I believe your post is a huge step to taking your life back and we will help you through this last leg of your journey if you let us. I hate that this might sound lame but if you could just log on every day and skim through posts. You don't have to respond. I just think exposure to people who think and feel like you might enable you to realize that you have performed an amazing accomplishment that is still in many ways a giant crap shoot and is extremely stressful on the body. Given all you have been through there is no doubt in my mind you will get your life back sooner rather than later. Hang in there and Kudos to you for coming out on the other side♫

[BoceprevirGal]

Never without advice from his Hep Doctor.