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Stamina and Fatigue after triple therapy treatment
I have geno 1 and completed 24 weeks of triple therapy (Pegasys, riba, Victrelis). My virus returned after 8 weeks of stopping treatment. I had to stop working during treatment since I also have heart disease and the anemia and other side effects wiped me. My job requires hi concentration and stamina. I returned to work 2 weeks after completing treatment and found myself completely wiped. I tried to ride it out but after 5 months, I'm back out on leave. Its now 6 months post treatment and I'm nowhere near my pre-treatment baseline which was not great to begin with. Im not sure how much to blame on lingering side effects of treatment and how much can be cause by return of virus. My doc suggested waiting for a clinical trial to re-treat but I'm not so sure its a great idea given my current functional capacity.
Anybody out there with similar lingering effects from drugs? I'm afraid I may never be able to work again...
Anybody out there with similar lingering effects from drugs? I'm afraid I may never be able to work again...
I did a hep c treatment, with some of the "new" non interferon type drugs. The drugs are not FDA approved yet but will be in 6 months or so. Iwas was undetectable at 5 weeks of treatment. Symptoms are almost non existent.. The drugs are Solvaldi, Olysio and Ribivarin. Very expensive, but apparently the insurance companies already know how well the new drugs work because they paid for all of it. $168000 for 12 weeks. Cure rates (predicted not actual) around 85%. I read your reply to another patient who had a tough time with the "old" interferon based treatments. You told him/her to think positive, that new drugs were on the way. I wanted to let you know how well I did, and to say , the world needs more like you.
I am glad you wrote about the side effects after treatment! I am 2 months out of treatment and am still having side effects. Stiff and painful joints that ache all night making it where I get very little sleep. Am having trouble with rashes still that move around to different locations. Red swollen eye lids that get sore and chapped.
My white blood cell count dropped to 1039 during treatment causing extreme fatigue, but that has risen back close to the normal range since I got off treatment. But I still get the "brain fog".
Half my hair came out during treatment. it's trying to thicken up a little, but when the rash recurs on my face the hair along my forehead comes out again.
I was glad to read about the side effects after treatment.
My white blood cell count dropped to 1039 during treatment causing extreme fatigue, but that has risen back close to the normal range since I got off treatment. But I still get the "brain fog".
Half my hair came out during treatment. it's trying to thicken up a little, but when the rash recurs on my face the hair along my forehead comes out again.
I was glad to read about the side effects after treatment.
I am very sorry to hear that you relapse. I was in that boat myself once so I know how you feel. Fortunately the Victrelis worked for me and I am now SVR. I wonder if you could tell me if there were signs throughout your treatment that you would not succeed. Since you have heart problems, were you terribly anemic and how was that handled? What was your beginning VL and when did you get to UND. What was your VL after the 4-week lead in?
I keep a chart and would like to add your information to it. You can go to my profile and click on the pictures.
frijole
I keep a chart and would like to add your information to it. You can go to my profile and click on the pictures.
frijole
Hi jnova426, I did not go to Mayo Clinic myself but have been in communication with two people that treated there and both reported a diagnosis of PIS.
Of what I understand of Mayo you dont really see any one specific physician but go thru a workup of multiple schools of medicine to see what is going on as a holistic approach.
A couple years after SVR we decided to do another biopsy. Along with more detailed bloodwork I was diagnosed with chronic low level anemia which shows itself in my iron panels and all leads to debilitating chronic fatigue.syndrome. Vyvanse was helping so much but our new Governor took it away from me. I have been fighting over a year to get back on it going thru a handful of other amphetamines which do nearly nothing for me (most would be spinning like tops for hours - I just sleep after half an hour lol)... but my issues go on and on...
The problem with BigPharma or GuruLiverDocs doing any research into long term issues is that there will be some sort of blame for all this mess they have created. This is the only group that I know of that is allowed to use the word "cure" for a virus. Try to do that for a cold remedy, cancer remedy and you will be bankrupt so fast you wont know what hit you!!! There is so much money involved in HepC cures!?!?! Not much in PIS *if ya get what I mean!?!?
btw, I would not wait to long on the SSI. Just start the process as it can take FOREVER - like years and years to get approved. Start keeping a journal with all your issues as the brain fog is not a good thing for your health or your SSI.
Best of luck in your future. I am sure it will be full of something - lemons = make lemonade!
Of what I understand of Mayo you dont really see any one specific physician but go thru a workup of multiple schools of medicine to see what is going on as a holistic approach.
A couple years after SVR we decided to do another biopsy. Along with more detailed bloodwork I was diagnosed with chronic low level anemia which shows itself in my iron panels and all leads to debilitating chronic fatigue.syndrome. Vyvanse was helping so much but our new Governor took it away from me. I have been fighting over a year to get back on it going thru a handful of other amphetamines which do nearly nothing for me (most would be spinning like tops for hours - I just sleep after half an hour lol)... but my issues go on and on...
The problem with BigPharma or GuruLiverDocs doing any research into long term issues is that there will be some sort of blame for all this mess they have created. This is the only group that I know of that is allowed to use the word "cure" for a virus. Try to do that for a cold remedy, cancer remedy and you will be bankrupt so fast you wont know what hit you!!! There is so much money involved in HepC cures!?!?! Not much in PIS *if ya get what I mean!?!?
btw, I would not wait to long on the SSI. Just start the process as it can take FOREVER - like years and years to get approved. Start keeping a journal with all your issues as the brain fog is not a good thing for your health or your SSI.
Best of luck in your future. I am sure it will be full of something - lemons = make lemonade!
Very interesting. Thanks for sharing. I almost feel like there needs to be an investment in research so that patients can be properly informed of the risks post treatment. Most doctors believe symptoms will disappear as soon as you stop the drugs
@BoceprevirGal: I am 41 years old and acquired the Hep C from transfusions I received as a child for congenital heart surgery. I remained at stage 0 for at least 27 years and my docs thought I would never convert to disease but in 2011 my liver biopsy showed quick progression to stage 3-4. I'm hoping that I just need more time to recover but I have days that I am debilitated by fatigue and joint pain. The "brain fog" is also a huge challenge. I'm afraid to put anything "away" for fear I won't remember where I put it. I have healthy eating habits and plan to start going to the gym again in the hopes that better endurance can improve my mood and stamina.
Good luck at your 6 mo check :)
Good luck at your 6 mo check :)
Frank...PIS sounds like a possibility although not mentioned by my physician. I remember reading an article from Europe where 30-40% of people interviewed reported lingering effects and inability to return to their normal functional capacity. Interestingly, the pharmaceuticals don't take ownership of these long term effects but I'm pretty sure there's a huge spectrum in response to the toxicity. I will consider going to the Mayo Clinic for a second opinion..Anyone specific you recommend? I will also consider applying for SSI to cover me while I sort things out.
I did Triple Tx with Victrelis also. I was Und at 3 months post, and I will get my 6 month post viral load labs done next week.
My question to you would be: what Stage were you when you Treated,
and what is your age?
I am 50 yrs old, and treated last year, at age 49 yrs. I experienced joint pain in my knees and hips, for the first time in my life, during Treatment, but I had already begun to have joint pain in my shoulder, and after having to lift tons of heavy stuff, when we moved a couple months prior to my Treamtent last year, my sternum/clavicle joint spontaneuosly popped out of joint, and healed that way, with a boney protrusion. I am thinking the Hep C may have caused me to have arthritis earlier than I normally woul dhave gotten it (my mom and grandma also have it) and the Treatment exacerbated it.
I went in as a Stage 2, and I hadn't been experiencing fatigue as a
symptom, prior to Treating, but I did have the insomnia.
It has been 6 months since I Treated, and I still have the insomnia, but refuse have never treated it with pain-pills.
I do have Brain Fog, but keep in mind my job is not demanding, I take care of disabled people, and help them with their daily life chores, etc.
My eye-sight was starting to worsen, at age 47 yrs, and now, post Treatment, it is worse, but then again, I am a year older, and need to go to an eye-doctor for glasses, I may have a stigmatism, etc.
I did have early onset hemolytic anemia during myTreatment, it was
down to 8.8 at end of treatment, but back up to normal, at my 3 months post labs. Did your hgb go back to normal?
You have just sufferd a huge dissapointment, and it is natural for you to feel depressed. I think someof my "brain fog" is also due to my depression. Depression distracts us~
This owuld be my advice to you, while you are on leave: start pampering yourself. Go shopping, and pick out some good organic foods to prepare. Do some mild exercising, such as a 40 minute walk (do you have a dog?) twice a day. Take a sauna, relax, get together with friend, take up an old hobby that youdidn't have time to do when you were working.
Once you are feeling more relaxed, consider takingpart in a Cinical trial, the new meds have many less side effects. If you arent ready for that yet, then dont lose hope: the Interferon free meds should be out within the next 3~6 yrs, but maybe much much sooner,if all goes well, with the trials for GS-7977
My question to you would be: what Stage were you when you Treated,
and what is your age?
I am 50 yrs old, and treated last year, at age 49 yrs. I experienced joint pain in my knees and hips, for the first time in my life, during Treatment, but I had already begun to have joint pain in my shoulder, and after having to lift tons of heavy stuff, when we moved a couple months prior to my Treamtent last year, my sternum/clavicle joint spontaneuosly popped out of joint, and healed that way, with a boney protrusion. I am thinking the Hep C may have caused me to have arthritis earlier than I normally woul dhave gotten it (my mom and grandma also have it) and the Treatment exacerbated it.
I went in as a Stage 2, and I hadn't been experiencing fatigue as a
symptom, prior to Treating, but I did have the insomnia.
It has been 6 months since I Treated, and I still have the insomnia, but refuse have never treated it with pain-pills.
I do have Brain Fog, but keep in mind my job is not demanding, I take care of disabled people, and help them with their daily life chores, etc.
My eye-sight was starting to worsen, at age 47 yrs, and now, post Treatment, it is worse, but then again, I am a year older, and need to go to an eye-doctor for glasses, I may have a stigmatism, etc.
I did have early onset hemolytic anemia during myTreatment, it was
down to 8.8 at end of treatment, but back up to normal, at my 3 months post labs. Did your hgb go back to normal?
You have just sufferd a huge dissapointment, and it is natural for you to feel depressed. I think someof my "brain fog" is also due to my depression. Depression distracts us~
This owuld be my advice to you, while you are on leave: start pampering yourself. Go shopping, and pick out some good organic foods to prepare. Do some mild exercising, such as a 40 minute walk (do you have a dog?) twice a day. Take a sauna, relax, get together with friend, take up an old hobby that youdidn't have time to do when you were working.
Once you are feeling more relaxed, consider takingpart in a Cinical trial, the new meds have many less side effects. If you arent ready for that yet, then dont lose hope: the Interferon free meds should be out within the next 3~6 yrs, but maybe much much sooner,if all goes well, with the trials for GS-7977
* 90% of people reported ongoing symptoms/side effects for longer than 12 months after treatment ended.
* The five most frequently reported post treatment symptoms/side effects were fatigue, joint aches/pains, brain fog, depression and mood swings.
* Regardless of SVR (sustained virological response), 40% of people felt worse after treatment than before and 31% felt better.
http://www.interferon.ws/Hepatitis-C-Trust-Interferon-Treatment-Survey.html
* The five most frequently reported post treatment symptoms/side effects were fatigue, joint aches/pains, brain fog, depression and mood swings.
* Regardless of SVR (sustained virological response), 40% of people felt worse after treatment than before and 31% felt better.
http://www.interferon.ws/Hepatitis-C-Trust-Interferon-Treatment-Survey.html
You're not alone....im 7 mos post-tx and have noticed my memory is failing me, ifeel like the interferon gave me brain damage, still having vision problems, the rashes and itching come back when it wants, still can't sleep for more than 3-4 hrs at a time....
PIS huh...? why not, there's Riba rage, Riba Burn...
we're all just guinea pigs in this grand scheme of "life"
PIS huh...? why not, there's Riba rage, Riba Burn...
we're all just guinea pigs in this grand scheme of "life"
You are not alone jnova426.
Everyones situation is different and many, if not most, seem to deal with treatment well. Then there is a percent that are disabled by treatment even after "curing" the C!
Treatment really messed me up. I went thru 72 weeks. I had many issues during treatment and they continue these many years now.
A few who have continuing issues have been to the Mayo Clinic and have been diagnosed with P.I.S. (Post-Interferon Syndrome). Having spoken to a few of my younger docs they are hearing about P.I.S. more and more.
I would recommend that you find a good doc and while looking for one start to document all your issues. Think seriously about applying for SSI disability.
There really isnt much to do about P.I.S. - as with any syndrome there is no cure but one must find a way to kind of cover the syndrome.
Best of luck and I hope that you recover in time but if you dont get ready for a long and difficult journey.
Everyones situation is different and many, if not most, seem to deal with treatment well. Then there is a percent that are disabled by treatment even after "curing" the C!
Treatment really messed me up. I went thru 72 weeks. I had many issues during treatment and they continue these many years now.
A few who have continuing issues have been to the Mayo Clinic and have been diagnosed with P.I.S. (Post-Interferon Syndrome). Having spoken to a few of my younger docs they are hearing about P.I.S. more and more.
I would recommend that you find a good doc and while looking for one start to document all your issues. Think seriously about applying for SSI disability.
There really isnt much to do about P.I.S. - as with any syndrome there is no cure but one must find a way to kind of cover the syndrome.
Best of luck and I hope that you recover in time but if you dont get ready for a long and difficult journey.
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