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post treatment recovery is going really slow
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post treatment recovery is going really slow

Hi everyone
I'm posting on the social page since a moderator might put this here anyway.  I guess I'm just looking for ideas and encouragement.  I am HCV-CURED!  I'll be 1 year post treatment on 5.3.13 (woo hoo!) from triple therapy, did 26 wks, undetectable at week 4, had procrit after week 10.  I still feel pretty horrible, especially on weekends, as if I'm still taking inteferon injections on Friday nights still.  My main sx are achy muscles/bones, massive fatigue, brain fog, and nausea.  I still itch (on the inside, like an allergy) too so I'm taking Benadryl at night and Zyrtec during the day.  I've been trying to walk when I can and I need to do more.  I'm just so wiped out.  I did get a few massages in the Fall and it's hard to say if those helped a lot or not.  I saw a rheumatologist in January (he noted fibro symptoms) and he found nothing wrong with the bloodwork he ran.
My depression is better (yay).  I'm just a little tired of feeling so horrible.  Does anyone have any other suggestions?  I have a lot to be grateful for and I am (!) and I've been able to work full time this whole time.  But if anyone out there has experience they can share, I'd really really appreciate it!
Thanks
Jeannine
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548668_tn?1394190822
I had some post-tx issues also - kept thinking it was just me and I'd improve....  Did your Doctor test your thyroid??   Your sx's sound a little like hypo-thyroid and even a small alteration in thyroid levels can affect you.

I was hyper-thyroid - a pre-tx condition that was prehaps exacerbated by the meds - it wasn't until in 'hindsite, after my hyperthyroid condition had been treated, and I researched a little more, that I discovered that the tendonitis in my arms, the feeling puffed with little exercise, general brainfog etc., vicious leg cramps, could all have been my thyroid condition.  He hadn't explained symptoms, and while he asked me how I felt, I didn't think the sx's I was having were related .. doh!.  

Hyperthyroid and Hypothyroid both have similarities but Hyper is 'wired and tired' - high bp, fastish heart rate, eating a lot and maintaining weight), digestive problems (similar to irritable bowel); brittle nails, hair loss,   whereas Hypo is 'heavy and tired', not hungry but not loosing weight, digestive problems (reflux, constipation) slightly depressed, lowish bp and heart-rate, brittle nails and hair loss.  I had foot cramps and tendonitis - neither of which I get when my thyroid is normal;  I too thought I had fibro.

I've now experienced both Hyper and Hypo (long story).   A sx of tx in some patients is Hypothyroid.    If your Doctor hasn't checked your thyroid, ask for a TSH, FT3 and FT4 blood test (and get a copy of the results, even if they're 'normal' - the Thyroid forum on Medhelp is awesome).    

For me, it was a relief just to know that, rather than a bunch of symptoms affecting me, it was something that could be, and has been dealt to.  I'm not wishing the condition on anyone, but it seems that simple test (and most definitely the overall multitude of unpleasant symptoms that an imbalanced thyroid can produced) is easily missed by many doctors.

I hope you're feeling better soon; I know it seem immoral to 'complain' after obtaining SVR, but it's challenging to get on with life, when you're feeling crippled,without the tools of a diagnosis to help you self-help.  At least SVR spurs us on to find out!!   (with my doc's it was better to itemise the symptoms rather discuss the relationship with the interferon - because they really don't know where to go!!....... best to just go forward). Best wishes.
17 Comments Post a Comment
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4856858_tn?1365382377
Hi Uriah, sorry to hear you are still feeling bad. The only things I can suggest is to really stick with the walking and drink a glass of water (or herbal tea) every hour or so. Maybe that will flush out the system. And little by little, try some more strenuous exercises.But congratulations on getting through the Tx and winning! Are you getting enough sleep at night?
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Avatar_f_tn
Thanks, yes, I get 8-9 hours of sleep a night and much more on weekends.  I do still drink a lot of water, I know if I don't I really pay.
Thanks for your feedback!
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4856858_tn?1365382377
I was thinking that it is easier to walk if you have someplace you want to go. Like to a movie or museum or something. Or see something new. Even if it is a ways away; you can take a bus part way and get off a couple stops early.
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548668_tn?1394190822
I had some post-tx issues also - kept thinking it was just me and I'd improve....  Did your Doctor test your thyroid??   Your sx's sound a little like hypo-thyroid and even a small alteration in thyroid levels can affect you.

I was hyper-thyroid - a pre-tx condition that was prehaps exacerbated by the meds - it wasn't until in 'hindsite, after my hyperthyroid condition had been treated, and I researched a little more, that I discovered that the tendonitis in my arms, the feeling puffed with little exercise, general brainfog etc., vicious leg cramps, could all have been my thyroid condition.  He hadn't explained symptoms, and while he asked me how I felt, I didn't think the sx's I was having were related .. doh!.  

Hyperthyroid and Hypothyroid both have similarities but Hyper is 'wired and tired' - high bp, fastish heart rate, eating a lot and maintaining weight), digestive problems (similar to irritable bowel); brittle nails, hair loss,   whereas Hypo is 'heavy and tired', not hungry but not loosing weight, digestive problems (reflux, constipation) slightly depressed, lowish bp and heart-rate, brittle nails and hair loss.  I had foot cramps and tendonitis - neither of which I get when my thyroid is normal;  I too thought I had fibro.

I've now experienced both Hyper and Hypo (long story).   A sx of tx in some patients is Hypothyroid.    If your Doctor hasn't checked your thyroid, ask for a TSH, FT3 and FT4 blood test (and get a copy of the results, even if they're 'normal' - the Thyroid forum on Medhelp is awesome).    

For me, it was a relief just to know that, rather than a bunch of symptoms affecting me, it was something that could be, and has been dealt to.  I'm not wishing the condition on anyone, but it seems that simple test (and most definitely the overall multitude of unpleasant symptoms that an imbalanced thyroid can produced) is easily missed by many doctors.

I hope you're feeling better soon; I know it seem immoral to 'complain' after obtaining SVR, but it's challenging to get on with life, when you're feeling crippled,without the tools of a diagnosis to help you self-help.  At least SVR spurs us on to find out!!   (with my doc's it was better to itemise the symptoms rather discuss the relationship with the interferon - because they really don't know where to go!!....... best to just go forward). Best wishes.
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Thank you so so much, Kristina!  This is a huge help to me.  I see my gastero next week.
jeannine
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Avatar_m_tn
I am 4 months post triple with Incivek (failed) and I have returned to complete normality (for me). The last side effect to go was the dry mouth, this had me worried. I had radiation therapy that about killed my salivary glands, which caused me the most discomfort of all the many side effects. I was soooo worried that this time they were dead for sure. They came back and I am now 100%, less 5 teeth and with some scratching scars. I am back to my 90 miles a month running and feel great. Be patient, there is life after therapy, good luck...Mark
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Avatar_f_tn
I think Kristina gave you excellent advice and I do agree that it is important to discuss (guilt free) post tx side effects.
Not everyone has them and some have them for a lot longer than others, but it can be part of the package or it could be related to other issues like hypothyroidism.
I am glad you brought it up.
Good luck to you.
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Avatar_m_tn
One other point I would like to make, I would gladly trade my no side effects for your SVR, I meant to say that above...Mark
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1840891_tn?1383280315
I'm sorry to hear you are still feeling crummy! I'm 7.5 months post EOT and also SVR but I do still have cirrhosis and I do still have lots of fatigue problems and my autoimmune issues (that arose three years after presumed date of infection with HCV) are not resolving in the slightest either. Did you have the aches and signs if fibro before tx, or did they arise during tx? It seems that some people get autoimmune disorders from their body's response to the virus, and some get them from the tx itself. Whichever is the case I'm still hoping they eventually improve. I do have one other idea for you if the thyroid possibilities are not the problem, you might consider talking to your doctor about antidepressants. The fatigue and difficulty in getting motivated to exercise can be linked to depression. One of the newer ad's, Cymbalta, is specifically marketed for fibro as well. I don't know if that means it helps though, and you'll have to do some research on that. Good luck and PLEASE do let us know how things turn out later on and whether you are able to resolve the problems, as it may help some of the rest of us too.
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1084115_tn?1385232189
i have almost the same or similar problems or  symptoms as you ,although iam 6 month's post triple tx,.
don't get me wrong but for me its a little of relief to know iam not the only one struggling with post tx problems
I wish you can find a way to feel better soon and let us know what helped the most.

best wishes
Marc
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Avatar_f_tn
Thanks everyone....today my thyroid panel came back "normal"...I'll get the stats on paper next week...glad I don't have that problem...so perhaps this is still a waiting thing....
The rheumatologist did recommend Cymbalta and I've really been fighting that since some people I know have had some very strange reactions to it.  Now that my depression is much better too, I'm super reluctant to give up what mental stability I have right now.
Yes, I'll definitely check back and let you know how things are going.
I'm so so thankful you guys are all here.   I too find relief and strength by knowing I'm not alone and that you, all of you, really really understand
jeannine
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548668_tn?1394190822
Thanks for the updae Uriah - I'm SO glad your thyroid's normal!!  

I have to add, the first time I did tx (mono-therapy) way back in 1993, I did relapse, but I also felt kind of dehydrated for a year or two afterwards; almost as though I was still having mild interferon injections.... it did disappear.

And the 2nd time, when I obtained SVR, the 'fibro' sx's cam on about 3 months post tx, and lasted for about 9 months.  I did have some tendonitis in the arms pre-tx,- and I know HVC does add to sx's like that (among others), but after tx it was intense, but in my arms only (my nurse thought I went back to work too early....mmmm).  It disappeared as strangely as it appeared, (and may or may not have been my thryoid which was fluctuating at the time)...  I'm feeling good now, so, while it took a while, and thyroid problems notwithstanding, that feeling of my first day without RIBA and each day thereafter has been a blessed relief, despite falling short of my original expectations!   I do hope you're feeling a little better each week;  feel free to PM your thyroid results - the 'normal' range has been changed, but a lot of Dr's have yet to get their heads around it.  
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  Hi Jeanine:  I will be 1 yr post tx on August 31st, and I am also thankfully SVR.
  I still have the same health issues I had before my tx, which is I dont handle stress well at all. I also have joint pain in my hips, which I aquired during my 28 wks triple treat w/victrelis.  
   I notice riding my bike helps my health, and I feel better with a healthy and pure diet. But many times I am too tired to cook dinner, but going out to eat makes me feel like crap.
   I do take a D3 5000 iu,  daily (works better after eating calcium foods) a sublingual B12 2000 mcs, in the morning, and a folic acid pill.  I always feel better when I stick with this regimen, and plenty of raw and fresh veggies. Keep forcing yourself to exercise, as we all need that blood to circulate~  best of luck
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1840891_tn?1383280315
You got me here:   "It disappeared as strangely as it appeared."

I'm so hoping some of my joint pains will disappear sometime soon. I'm 7.5 months post-EOT, and I'm SVR, but so far my arthritis and fibro are not improving. Thanks so much for this post, as it gives me more reason to hope that maybe 1 year post-EOT will do it.
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163305_tn?1333672171
There is no question that some people do have long term side effects.However we also have to consider what condition the rest of your body is in, including your liver. It takes time for the liver to heal and rejuvenate.
Do eat well, drink lots of water and walk. I found liquid vitamin B 12 helps me with energy. A good multiple vitamin can't hurt.

Good luck
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548668_tn?1394190822
Agreed OH - B12 is just amazing; and amazing what it does if you're low (I take a B-complex with the highest B12 in it - I did have B12 shots before tx at one stage, and it the results of the injections were rapid for sciatica).
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548668_tn?1394190822
I know.... 'it disappeared as strangely as it appeared'.    It was so bad at one stage, I think it caused bursitis in my shoulder joints, and then I ripped a rotor cuff.  So, between that, and the thyroid going strange, I was taking one precious step after the other to get through the day.  

One day I realised that amongst the thyroid symptoms, and shoulder pain, my actual arms were no longer hurting.   I didn't take as good care of myself post tx, as I did pre-tx and during tx;  maybe with early cirrhosis I shouldn't have been so blase, and continued with my no red meat, juicing etc regimine, but it was a little difficult to focus with work and family and the expectation I was better.   It was another road of patience being tested;  B-complex and Vit C were the only things I kept up with (being careful that it wasn't solely calcium ascorbate but a mix of sodium ascorbate and ascorbic acid).
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