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

[orphanedhawk]

I finished 24 weeks of SOC 2 weeks ago. They told me at the liver clinic that my blood levels would not rise until about a month post tx.

Like you, I noticed quite a bit of tension and had horrible headaches. I started massaging my head, stretching my jaw and made an appointment for a massage.

It says not to get pregnant for 6 months after using ribavirin. This points out that the meds take time to leave our bodies.

It takes time to get the meds out of your system.
My theory is the afteraffects are our bodies trying to rebalance itself after having tried to adapt to the meds we took for months.

Weight baring exercise is good for for our bones.
Get outside, breath the fresh air, walk, stretch and be patient.
It just takes time.

Good luck~

[toryw]

thanks orphanedhawk, I guess its very early days and I just want my life back. Patience and fresh air can only help :^)

[crigger]

There has been few people complaining about post treatment depression .  It really does take time to recovery.  Just think of what your body and mind has been through for the last year it will take a little longer  than three weeks to be back to normal.  Good luck to you and I hope you remain UND

[BoceprevirGal]

I have only been in treatment for a little over 8 weeks, and I can only imagine how exhausted you must feel, having been anemic that long, and still having such a low HGB. I am also so sorry that they didn't address your anemia during your treatment. You should go back and ask your Hep Doctor about it now, and if you should be taking iron supplements, or iron rich food. One of the side affects of Anemia is depression~

[jules2551]

iron supplements and liver disease?  really?

[BoceprevirGal]

Here is a link that shows depression to be a sx of anemia~
http://www.hepatitis-central.com/mt/archives/2012/01/anemia_and_hepa.html

[toryw]

Thanks everyone for comments and support, it just helps to know that how I feel is how others have also felt. Onwards and upwards

[BoceprevirGal]

Just make sure you have your HGB checked again soon, Tory, because 8.5 is way too low, for your HGB. I feel like total crap, with mine in the 9's, so try to have your Doctor resolve the issue

[flcyclist]

I'm the same age and also just finished 48 weeks of SOC.  At 2 weeks eot my Hgb and platelets are just beginning to return to normal.  My ANC/wbc's are slowly creeping up to, but expect to be on neupogen for another week or two.  

After almost a year on tx and not having the energy and stamina to do very much, it will take some time to readjust.   We've put a tremendous amount of energy into focusing on getting through tx and now it is suddenly over, sometimes with little followthrough from the docs.   It is a bit of a letdown to be over, but at the same time a big relief.  Try to get out of the house when you feel up to it and get some fresh air.  Keep on drinking water to help flush the med out and hopefully you'll start feeling better soon.

[BoceprevirGal]

Never without advice from his Hep Doctor.

[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♫

[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

[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.  

[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

[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

[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.

[rivll]

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

[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

[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

[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.  

[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!!  

[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.

[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.

[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