Aa
Is it possible?
Hi, I'm in Week 35 of SOC. First 24 weeks were SOC and Gilead GS5885/GS9451. UND since Week 6. Sx were bad during SOC and Gilead trial drugs period, but since I finished the Gilead weeks and continued on only SOC, I've been getting sicker and sicker and sicker. Very major nausea and vomiting now for thee weeks and showing no signs of easing off. I possible eat most things, though suddenly I'm crazy about salt and fat. Major breathlessness and chest pain, dizziness, very light headed, and just plain sicker than I've ever been in my entire life, even sicker than the first six months of tx, which is kinda hard for me to believe. My doctors are not much help, though they've been great until this. They tell me I should be adjusted to the Inf and RIBA by now. I'm soooo not. Sicker and more toxic than ever. Is it possible that one gets new and worse sx late in the tx period? Do the toxic drugs just mount up and up in ones system? Anybody else get worse toward the end of tx?
"I know, I know, the rescue meds are the up side for all this :-) To be so stoned and legal at the same time must be someone's idea of heaven. Not mine. "
I wasn't referring to pot~ although it is excellent for nausea.
I was speaking about procrit and neupogen. Procrit is used for anemia ( low red blood cells) while neupogen is used for low white blood cells.
Another thing just came to mind, Vitamin B 12. A member wrote yesterday, said they got a B12 shot and feel better than they have during the rest of tx.
New research supports B12 helping obtain SVR.
Don't quit ! You would be better off reducing your dosage than quitting.
I wasn't referring to pot~ although it is excellent for nausea.
I was speaking about procrit and neupogen. Procrit is used for anemia ( low red blood cells) while neupogen is used for low white blood cells.
Another thing just came to mind, Vitamin B 12. A member wrote yesterday, said they got a B12 shot and feel better than they have during the rest of tx.
New research supports B12 helping obtain SVR.
Don't quit ! You would be better off reducing your dosage than quitting.
Hang in there, all of the above advice is fantastic.
Saying that you will get used to feeling sick is ridiculous, I was told the same thing. I wish some of these doctors could take a month of the meds we have had to take LOL
My best to you
D
Saying that you will get used to feeling sick is ridiculous, I was told the same thing. I wish some of these doctors could take a month of the meds we have had to take LOL
My best to you
D
I know, I know, the rescue meds are the up side for all this :-) To be so stoned and legal at the same time must be someone's idea of heaven. Not mine.
I'm due for a major trial check in one week. I shall insist on a chest X-ray. But. I know it will show NAD. It's the process.
I must say, though, that this is the first time in 35 weeks of considerable suffering that I've seriously thought of just stopping treatment, taking $20K from my bank acct and disappearing to an island in Thailand for the rest of my life. Yesterday, I seriously tried to calculate my odds of breakthrough and relapse if I went of tx now. But, I'll hang on :-)
I'm due for a major trial check in one week. I shall insist on a chest X-ray. But. I know it will show NAD. It's the process.
I must say, though, that this is the first time in 35 weeks of considerable suffering that I've seriously thought of just stopping treatment, taking $20K from my bank acct and disappearing to an island in Thailand for the rest of my life. Yesterday, I seriously tried to calculate my odds of breakthrough and relapse if I went of tx now. But, I'll hang on :-)
Wow do you have some great rescue pain meds or what? What I wouldn't do for something a little more potent than good ol' Tylenol.
I didn't sound like you were critisising your medical team. I mean sometimes on these meds we feel so c rappy that we don't know what is real. The only thing I was thinking that in a study you can't really see your own GP even if you want, right? I am just asking because of the chest pains you mentioned in your initial post.
Other than that I have to tell myself the same thing your medical team tells you: soldier on. Buck up. It is just unreal how we willingly let ourselves feel this miserable. As you can see lots of us are at the same stage of treatment as you and feeling lousy so you definitely are not alone.
I didn't sound like you were critisising your medical team. I mean sometimes on these meds we feel so c rappy that we don't know what is real. The only thing I was thinking that in a study you can't really see your own GP even if you want, right? I am just asking because of the chest pains you mentioned in your initial post.
Other than that I have to tell myself the same thing your medical team tells you: soldier on. Buck up. It is just unreal how we willingly let ourselves feel this miserable. As you can see lots of us are at the same stage of treatment as you and feeling lousy so you definitely are not alone.
First, and most importantly, sincere thanks to you guys for taking the time to think about my issues and write to me so helpfully about them. I didn't mean to criticize my medical team, which has been very responsive, creative with solutions to sx, and also caring. I think the team is a bit stumped at this point, since I've had all the tests you recommend and everything is fine, given that I'm blasting myself with interferon and ribavirin :-) I am anemic but not as anemic as I was 6 months ago (hovering around 11). My platelets get lower each month but have not yet reached critical. Ditto WBC. Thyroid, ok. EKG, ok. BP, very low. I weigh about 78 kilograms and take 600 mg Ribavirin twice a day. I have had severe and disabling bone pain since about Week 8. It is an interferon sx, and treated with opioids (Hydrocodone and Fentanyl). So, the official word is that, gee, we're sorry, we can control the nausea maybe and the bone pain, but your labs and other obs are all unremarkable for someone of your age having this treatment, so can you just soldier on? And, basically, I think the team is right. It's just a difficult process getting even more difficult at a time when I and my poor body have pretty much had enough.
Tel
- I just said this same thing on another thread but I will say it again. For me the end of treatment was harder than the beginning. Week 36 is about the peek of pits and that is where you are. I don't know if there was any adjustment coming off the gilead drugs but your doctors are crazy telling you that you should be adjusted by now. No way.
Lots of folks on this forum take the Zofram and say it is better than other drugs for the nausea. I would give that a try.
good luck, frijole
- I just said this same thing on another thread but I will say it again. For me the end of treatment was harder than the beginning. Week 36 is about the peek of pits and that is where you are. I don't know if there was any adjustment coming off the gilead drugs but your doctors are crazy telling you that you should be adjusted by now. No way.
Lots of folks on this forum take the Zofram and say it is better than other drugs for the nausea. I would give that a try.
good luck, frijole
How much do you weigh and how much ribavirin are you taking ? I assume you're doing the full dose of interferon. You may need a dose reduction, especially if you are light weight.
Adjusted to the interferon ? This strong medicine kills a difficult virus. Few people become adjusted to it. Some people's bodies tolerate it better than others.
When I began getting shortness of breath and a dry cough, the NP at my liver clinic immediately told me it was the ribavirin and reduced my dosage.
When I complained of the side effects in the hepatologist's office, he immediately suggested lowering my interferon dosage. ( I am small and med sensitive)
He's very experienced with this treatment and has seen many patients stop tx entirely. This is why he is willing to prescribe 'rescue drugs' and reduce dosage if necessary to keep the patient on treatment.
Please take a look at the side effects of SOC tx on this site:
http://www.pegasys.com/patient/about-chronic-hepc/treatment/index.html
My suggestion is to be aggressive. Ignoring these symptoms is not acceptable, trial or not.
Good luck~
Adjusted to the interferon ? This strong medicine kills a difficult virus. Few people become adjusted to it. Some people's bodies tolerate it better than others.
When I began getting shortness of breath and a dry cough, the NP at my liver clinic immediately told me it was the ribavirin and reduced my dosage.
When I complained of the side effects in the hepatologist's office, he immediately suggested lowering my interferon dosage. ( I am small and med sensitive)
He's very experienced with this treatment and has seen many patients stop tx entirely. This is why he is willing to prescribe 'rescue drugs' and reduce dosage if necessary to keep the patient on treatment.
Please take a look at the side effects of SOC tx on this site:
http://www.pegasys.com/patient/about-chronic-hepc/treatment/index.html
My suggestion is to be aggressive. Ignoring these symptoms is not acceptable, trial or not.
Good luck~
This is obviously a trail you are in if you were taking Gilead pills. Because they are doing a trial and want the trial to succeed and want as few side effects to be attached to the trial drugs as possible, maybe the trial doctors are downplaying all of your side effects. If they are not downplaying your side effects for the benefit of the trial, then I am really unclear what their motives are. Of course, they could just be like so many other Hep C treating docs, very ignorant about side effects and very callous.
I also don't know where they came up with the idea that you should be "adjusted" to the medications by now. What the he!! does that mean, LOL. Do they really think that people "adjust" to toxic medication going into their bodies any more than people adjust to lead or arsenic going into their bodies. The meds are toxic. It does not take Einstein to figure out that toxic substances can cause problems. Sure a person adjusts to (or puts up with) feeling tired and having no energy and having no motivation and having muscle aches and pains and headaches and flu like symptoms, not because they don't notice the side effects, but because they are determined to get through Tx at all costs and there is not much that can be done about those particular side effects. But few people "adjust" to major nausea and vomiting, major shortness of breath, chest pain, major dizziness and feeling light headed. Granted, many of us feel waves of lightheadedness and/or dizziness. Many have shortness of breath and dizziness and weakness and fatigue when they are anemic. Chest pain, while it may be from any number of causes unrelated to the heart, should always be investigated.
You said you feel sicker than you did during the first 6 months of treatment. That should be a red flag to those docs. If these symptoms are new or worsening, then they need to find out why.
Regardless, it seems to me that you need some intervention. For the nausea I used (prescription) Zofran 8 mg every 8 hours. Perhaps that would help you. Or, there are other anti-nausea drugs that could be prescribed. In my opinion, they should give you something to treat the nausea or you will just keep getting sicker and you could jeopardize treatment if you vomit up your pills. If you can get that nausea and vomiting under control, you will be able to eat. (Incidentally, I also craved slightly salty and/or tangy foods like herbed olives, pickles, etc.)
In my opinion, the docs also need to investigate and find out why you have chest pain, major breathlessness, and dizziness and lightheadedness. I am not sure why they are not taking these symptoms seriously. These are all symptoms of anemia, and that could be what is causing them, but they could be from any number of other causes too. A thorough physical exam and history would be a start. Getting some lab work would be indicated, complete blood count, metabolic panel, thyroid, clotting tests, liver panel, maybe an ANA or other tests as indicated. An EKG and a chest x-ray may be helpful. Other tests may be indicated depending on the results of the initial tests.
These meds, especially the Interferon, can cause all sorts medical problems (in addition to the side effects). In my opinion, the docs need to pay attention and investigate possible causes for your worsening symptoms.
As far as the toxic drugs building up, yes, I think that can happen and, when it does, more/worse symptoms may appear. People are different and people react differently to toxic substances. The main thing you want to be sure of is that the new and worse symptoms are not from some new disease/disorder caused/triggered by the Hep C drugs. And you want to be sure you are not anemic or in some other physiological imbalance. In my opinion, your symptoms should be thoroughly investigated. If your treating docs won't investigate, perhaps you can see your primary care physician to do the history, exam, work-up, and testing.
My own experience was that I got gradually sicker with nausea, vomiting, bloating, weakness, lightheadedness, generally feeling like crap until I finally, belatedly, got on some Zofran about week 8. Then I felt better for a week or 2 until the rash took off in full force, LOL. The rash took months to get under control because I had the Three Stooges for a treating team. Then, after the Hydroxyzine kicked in and controlled the rash/drug reaction I felt better again. On Incivek my hemoglobin never went below 11.1. With that 11.1 hemoglobin I did have some breathlessness, a high heart rate, high blood pressure, lightheadedness and dizziness, fatigue, and weakness until my body adjusted to the lower hemoglobin (although my fast heart rate stayed fast). Then, after Incivek, my hemoglobin started to go back up. But, at week 32 my hemoglobin dropped from 12.2 to 10.4 in a month. I became very dizzy, lightheaded, fatigued, and weak. My hemoglobin had been going steadily up after I finished Incivek, then at week 32 it dropped some. So things can change later in treatment. Luckily, my hemoglobin did not drop more and it is now gradually coming back up.
I am now in week 45. For the past couple of months I have felt increasingly better. I still get waves of lightheadedness and some fatigue and some muscle weakness. But my stamina is improving, the rash is under control, I am stronger, I have more energy and motivation. However, now a new problem has arisen in just the past few weeks, dizziness while standing with my eyes closed and some lower leg muscle twitching and bizarre current like sensations running through them, mainly at night. The dizziness while standing with my eyes closed started in early June, about week 36. The twitching and current sensations started in late June, about week 39. These are totally new symptoms. I never, ever had them before. I know they are from the Interferon. If they do not disappear after treatment is finished, I will get a thorough work-up.
I hope you find some relief soon.
I also don't know where they came up with the idea that you should be "adjusted" to the medications by now. What the he!! does that mean, LOL. Do they really think that people "adjust" to toxic medication going into their bodies any more than people adjust to lead or arsenic going into their bodies. The meds are toxic. It does not take Einstein to figure out that toxic substances can cause problems. Sure a person adjusts to (or puts up with) feeling tired and having no energy and having no motivation and having muscle aches and pains and headaches and flu like symptoms, not because they don't notice the side effects, but because they are determined to get through Tx at all costs and there is not much that can be done about those particular side effects. But few people "adjust" to major nausea and vomiting, major shortness of breath, chest pain, major dizziness and feeling light headed. Granted, many of us feel waves of lightheadedness and/or dizziness. Many have shortness of breath and dizziness and weakness and fatigue when they are anemic. Chest pain, while it may be from any number of causes unrelated to the heart, should always be investigated.
You said you feel sicker than you did during the first 6 months of treatment. That should be a red flag to those docs. If these symptoms are new or worsening, then they need to find out why.
Regardless, it seems to me that you need some intervention. For the nausea I used (prescription) Zofran 8 mg every 8 hours. Perhaps that would help you. Or, there are other anti-nausea drugs that could be prescribed. In my opinion, they should give you something to treat the nausea or you will just keep getting sicker and you could jeopardize treatment if you vomit up your pills. If you can get that nausea and vomiting under control, you will be able to eat. (Incidentally, I also craved slightly salty and/or tangy foods like herbed olives, pickles, etc.)
In my opinion, the docs also need to investigate and find out why you have chest pain, major breathlessness, and dizziness and lightheadedness. I am not sure why they are not taking these symptoms seriously. These are all symptoms of anemia, and that could be what is causing them, but they could be from any number of other causes too. A thorough physical exam and history would be a start. Getting some lab work would be indicated, complete blood count, metabolic panel, thyroid, clotting tests, liver panel, maybe an ANA or other tests as indicated. An EKG and a chest x-ray may be helpful. Other tests may be indicated depending on the results of the initial tests.
These meds, especially the Interferon, can cause all sorts medical problems (in addition to the side effects). In my opinion, the docs need to pay attention and investigate possible causes for your worsening symptoms.
As far as the toxic drugs building up, yes, I think that can happen and, when it does, more/worse symptoms may appear. People are different and people react differently to toxic substances. The main thing you want to be sure of is that the new and worse symptoms are not from some new disease/disorder caused/triggered by the Hep C drugs. And you want to be sure you are not anemic or in some other physiological imbalance. In my opinion, your symptoms should be thoroughly investigated. If your treating docs won't investigate, perhaps you can see your primary care physician to do the history, exam, work-up, and testing.
My own experience was that I got gradually sicker with nausea, vomiting, bloating, weakness, lightheadedness, generally feeling like crap until I finally, belatedly, got on some Zofran about week 8. Then I felt better for a week or 2 until the rash took off in full force, LOL. The rash took months to get under control because I had the Three Stooges for a treating team. Then, after the Hydroxyzine kicked in and controlled the rash/drug reaction I felt better again. On Incivek my hemoglobin never went below 11.1. With that 11.1 hemoglobin I did have some breathlessness, a high heart rate, high blood pressure, lightheadedness and dizziness, fatigue, and weakness until my body adjusted to the lower hemoglobin (although my fast heart rate stayed fast). Then, after Incivek, my hemoglobin started to go back up. But, at week 32 my hemoglobin dropped from 12.2 to 10.4 in a month. I became very dizzy, lightheaded, fatigued, and weak. My hemoglobin had been going steadily up after I finished Incivek, then at week 32 it dropped some. So things can change later in treatment. Luckily, my hemoglobin did not drop more and it is now gradually coming back up.
I am now in week 45. For the past couple of months I have felt increasingly better. I still get waves of lightheadedness and some fatigue and some muscle weakness. But my stamina is improving, the rash is under control, I am stronger, I have more energy and motivation. However, now a new problem has arisen in just the past few weeks, dizziness while standing with my eyes closed and some lower leg muscle twitching and bizarre current like sensations running through them, mainly at night. The dizziness while standing with my eyes closed started in early June, about week 36. The twitching and current sensations started in late June, about week 39. These are totally new symptoms. I never, ever had them before. I know they are from the Interferon. If they do not disappear after treatment is finished, I will get a thorough work-up.
I hope you find some relief soon.
I'm not sure the role your Gilead meds have in this so I am just going to address the nausea. I was really nauseous in the beginning and it went away so I didn't need a script for Zofran. I tired Zofran recently and both times it gave me a splitting headache.
Anyway I am in week 30 and I have been feeling nauseous lately as well. I can't tolerate being stimulated in any way. I keep wondering if it has something to do with motion or some other factor. I mean I am not really doing anything different. I finally came to terms that it is not going to go away on it's own so I recently started taking a chewable antiemetic with meclizine in it. Brand names are Bonine or the Rugby chewables. They are a cousin to Hydroxizine but with a shorter half-life (6 hours compared to 20 hours) so they help with itching (I know you did not mention itching but I have had a bit of it)
It is an OTC med for travel sickness and it it helps with inner ear infections and vertigo. It is somewhat sedating but no where near Benedryl or Atarax.
I am not sure about medication toxicity being the cause of your nausea.
The primary clinical toxicity of ribavirin is haemolytic anaemia. When was the last time you had a CBC? Knowing your Hgb might help. If it's not that than I can't think of anything in particular especially since there is a huge variable with your trial drug in the beginning. I'm not sure about differentiating the symptoms of interferon toxicity with adverse side effects so maybe someone else will address this.
It concerns me a little the trial folks are unconcerned with a complaint of chest pain. When you say 'pain' what kind of pain is it? Burning, throbbing, piercing, pressure or what? Also, you certain the discomfort you feel is square in the chest? The first time I ever got heart burn I it felt like chest pains. I remember I was eating baby aspirins and doing all this emergency stuff for the heart when all I needed was a DiGel.
The other reason I ask is that if you are eating more fat/salt than usual it could be causing certain effects - though this would probably have to be to the exclusion of all other foods.
Here's where the tid-bit about Riba came from:
http://www.drugs.com/pro/ribavirin.html
Sorry this is happening after coming so far. Be sure to tune in later as I am sure there will be other posts with suggestions & ideas. Hang in there!!!
**Hey, all this time I thought your user name was telekat.
Anyway I am in week 30 and I have been feeling nauseous lately as well. I can't tolerate being stimulated in any way. I keep wondering if it has something to do with motion or some other factor. I mean I am not really doing anything different. I finally came to terms that it is not going to go away on it's own so I recently started taking a chewable antiemetic with meclizine in it. Brand names are Bonine or the Rugby chewables. They are a cousin to Hydroxizine but with a shorter half-life (6 hours compared to 20 hours) so they help with itching (I know you did not mention itching but I have had a bit of it)
It is an OTC med for travel sickness and it it helps with inner ear infections and vertigo. It is somewhat sedating but no where near Benedryl or Atarax.
I am not sure about medication toxicity being the cause of your nausea.
The primary clinical toxicity of ribavirin is haemolytic anaemia. When was the last time you had a CBC? Knowing your Hgb might help. If it's not that than I can't think of anything in particular especially since there is a huge variable with your trial drug in the beginning. I'm not sure about differentiating the symptoms of interferon toxicity with adverse side effects so maybe someone else will address this.
It concerns me a little the trial folks are unconcerned with a complaint of chest pain. When you say 'pain' what kind of pain is it? Burning, throbbing, piercing, pressure or what? Also, you certain the discomfort you feel is square in the chest? The first time I ever got heart burn I it felt like chest pains. I remember I was eating baby aspirins and doing all this emergency stuff for the heart when all I needed was a DiGel.
The other reason I ask is that if you are eating more fat/salt than usual it could be causing certain effects - though this would probably have to be to the exclusion of all other foods.
Here's where the tid-bit about Riba came from:
http://www.drugs.com/pro/ribavirin.html
Sorry this is happening after coming so far. Be sure to tune in later as I am sure there will be other posts with suggestions & ideas. Hang in there!!!
**Hey, all this time I thought your user name was telekat.
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
