Hello, I just took injection 21 of the Pegintron. I find that I am unable to relax or calm myself. I am way too sensitive, easily hurt, easily misunderstand others as they misunderstand me. Once upset I just want to scream, cry etc. My muscles are in knots. I am forcing the water as much as I can I am on Prozac and Xanax however I think I must need something else and was hoping someone would suggest something to help me. I am afraid I will not have a friend or family member left by my side by the time I complete treatment. I had a serious infection last week (boil) which is still draining so I wonder if that could be adding to my distress. Distressed is exactly what I feel. I am trying so very hard to keep myself under control however I am doing a bad job. As we all have other problems during treatment (we do not get a time out while on tx) I have had many problems. I treated in 2008 with pegysus,Riba and polymerase inhibitor; I did not experience this, I did not plan for the extra expenses of prescriptions, potions, lotions to control side effects so money is an issue. I am trying to do meditation to help however I am new at this. I was wondering if perhaps anyone else experienced severe anxiety and tense muscles during tx and what did they do to help themselves. Right now I am trying calcium magnesium potassium, zinc. I would really be so grateful to anyone who could reply. While I realize I need to ask my doctor I have done that and his reply so far has been to tell me it was in the literature I was given. Ok, I understand, isn't there something that could help me? I will call again on Monday to let him know it has gotten worse in the past week. I feel I am at the end of my rope and my mind is telling me to just stop the tx. I know that it is not the answer, I do not want ESLD or cancer.
I would appreciate any responses. This forum has been invaluable to me and has kept me on tx when I felt I could not go on.
Thank you all very much, bless you
Dee, I have not experienced any mood changes on treatment (Pegasys, Riba, Incivek) but I know others have posted about it. (I am on Wellbutrin and have been since before treatment started.)
My main reason for responding is that I think your doctor is being too flippant about this. So what if it was in the literature. There are many other side effects like nausea, rash, bowel problems, anemai, etc. That does not mean you ignore them. I think you need to be persistent and assertive and outright tell him you need something, either a change of meds or an addition. If he cannot figure it out, then he needs to refer you to a psychiatrist who can figure out a regimen that works, or at least helps.
I think I have a pretty good doctor and case manager. They have managed my weekly office visits and lab work well and have ordered extra labs as necessary. But the medical culture in MN seems to be very conservative in terms of treatment. (I have been noticing this since I moved here from SF.)It seems they are all afraid of prescribing an adequate dose no matter what it is for. It took me 3 requests to get the correct dose of Zofran to control the nausea that was making me very ill (and I finally said, "Can I get the correct dosage this time"). I had to really push to get a stronger ointment for my rash and it took way too long. Anyway, I finally realized that I am going to have to be very assertive and not take "let's wait and see" for an answer. I have gotten rather assertive and vocal about what I need but being vocal works.
I think you will have to be more assertive about getting some help. You don't want to risk successful treatment because no one is treating your symptoms.
Dee, from your posts, I know that you've struggled a lot with the side effects of treatment. I am not a doctor, but I think that some anxiety and/or depression follows being diagnosed with a chronic illness and going through the difficult treatments that you've been through and are currently going through. Also, some anxiety and/or depression can be a side effect of probably any of the treatment drugs that you've been on (Inc) and are still on (Int and Riba). However, the extreme anxiety/depression that you describe seems like much more than what you should have to endure. In my husband's case, his doctor and his NP have been very responsive to both physical and psychological needs throughout all 3 of his treatments. Prior to SOC, she put him on Lexapro just to make sure he didn't develop anxiety/depression while in treatment. It was increased once. He stayed on that dose in between treatment #1 and treatment #2. Prior to second treatment, she kept him on full dose of Lexapro and then added Trazedone a few weeks in when he began to feel more irritable and anxious/depressed. He went off the Trazedone after second treatment failed, but stayed on the Lexapro, because it helps. Prior to third treatment (triple w/ Inc) he had to go off Lexapro because it is on the list of drugs not to take with Inc, and she switched him to Citalopram, again to avoid the psychological side effects of treatment. She chose Citalopram because there is room to increase the dosage if needed, but he is in week 18 and hasn't yet needed to increase it. I agree with Pooh that your doctor doesn't seem to be managing your psychological side effects to treatment. I always go with my husband to his appts, and even though he may be hesitant to talk with the NP or the doctor about psychological side effects, I do not hesitate. I bring it up and I make sure that they know what I have noticed or observed. Both the NP and the doctor really look to me to let them know how he's doing emotionally. He struggles somewhat with the anxiety/depression that goes with the diagnosis of the Hep C (worries about not being able to work, worries about being a burden on me and the kids, worries about not being able to provide for us or dying and leaving us alone). He also struggles somewhat with the anxiety/depression that is a side effect of treatment (irritability, anger, mood changes). He's done well this time with triple therapy with Inc., and so far (knock on wood) hasn't had any increase in psychological symptoms requiring a dose increase, but based on the past two treatments, I feel very confident that if anything changes in that area, his NP and doctor will respond quickly. They both seem very knowledgeable about managing the psychological side effects with antidepressants and take these side effects very seriously. They have both expressed to my husband and to me that they would rather manage these side effects rather than have a patient have to discontinue therapy or let these side effects become really scary. Can you ask for a referral to a psychiatrist to help coordinate with your hepatologist regarding anxiety/depression? Can your Prozac be increased a bit? Could your husband come with you to your next appt and help explain to the NP or the doctor about these side effects? Can something be added to your Prozac that might help?
I'm not sure about skin infections, but hopefully your doctor put you on an antibiotic? My husband had one last year during 2nd treatment and he required an antibiotic (wbc was low and he just couldn't fight the infection). Also not sure about the Calcium/Magnesium/Potassium/Zinc. No experience there. My husband hasn't really wanted to take any vitamins or supplements since his diagnosis of Hep C, although his doc did tell him that a multivitamin without iron was fine.
Best wishes. I hope you feel better soon.
are you sleeping enough?..maybe sleeping pills??? even though i was taking zoloft i was still snappy at times and every now and then told my gf and sister that i knew i wasn't right and thats just the tx...i couldn't focus on the big picture and was drawn into little stuff...sometimes later i would look back and think why was i concerned about it...like the feeling you get when you argue with a teenager and wonder how they got you into it... good thing is that feeling was gone within 2 weeks after tx...now i feel fine.... i wish you the best of luck....billy
Hi Dee, when you say " I am way too sensitive, easily hurt, easily misunderstand others as they misunderstand me." thats pretty common on tx..... While i agree your doctor doesn't seem to be much on the "bedside manner" part you really need to tread carefully. As for as being to assertive with your doctor it just might get you a stop treatment from his part and thats something you don't want after coming this far.......... Hang in the girl, wishing you the best........
I'm having the same issues. Dr gave me lorasepam, which has helped. My family actually called my doctor on me. When I went in he said my feelings were to be expected and that family will forgive me, bc that's what families do. As for my friend situation I think it helped me figure out who truly is my friend, and who is not. I just want to get to the finish line, everything else is just details.
dee, so sorry you're feeling so bad. i wish i could help you. you've been given some good advice from the others. just wanted you to know i'm thinking of you and wish you better days ahead. take care. belle
dee, the heightened sense and emotions hit us all, but your anziety may be over the top. Please talk to your doctor again to get this worked out. You only have 3 weeks to go after this. Hang in there
Thank you so very much for your message. I think you are right, I encountered this during my last tx so found another doctor, while the new one is better I see what you are saying about being more assertive. I am calling him tomorrow and telling him that I need help to get through the last 4 weeks. I have been ill with a bacterial infection so I thought perhaps that was adding to everything, then when the aching started I thought, a new sx? WAAAA
I appreciate so much people here on MH, if it was not for this forum I do not know where I would be. People here have helped me so much. I will never forget or leave this forum as I feel it has saved my life. I have had many more problems this time than the last time. My doctor just keeps saying, "I told you this would be hard" yes I understand it is hard and I wonder if age and degree of damage add to the severity of sx. It would make sense why some people can get through with little help and others are having problems. I have tried to explain I am sleep deprived however again, same response.
Thank you again
can-do Thank you so much, I never though that if I pushed too hard they might take me off treatment. I appreciate everyone's response as it is getting me thinking outside of the box. I have not come this far only to quit. I think I need to regroup, perhaps make a list. Instead of being blown about by my emotions I wanted to try to get them under control as they were before. I am calling the nurse tomorrow to ask for help, I have a bad habit of not directly asking for help until I am at the end of my rope.
Any problem I have had while under tx has been met with "It is the medication, lay down, you will get better" Calling to say I can't breath also met with same exact response. I am grateful for this shorter tx and so figured it would be more condensed and it has been. Unfortunately my doctor did not keep up with drug interactions until I brought them to his attention. Now he has a revised list from Vertex as they have found more drug interactions since I started in September. I am going to print out everyones response so I do not forget the advice
Thank you again
Thank you so very much for your response to me. I am so grateful for everyone's response to me. It helps in more ways than one. My family is not in contact with me and I know that is not helping my mental outlook. My husband and I have discussed and he feels I should go to therapy to deal with their lack of communication. They do not understand why I "chose" to treat again. They do not understand the disease and how a person can die from this. In their opinion I could just live my life and never treat again :)
So there are more things going on than "just the tx" and perhaps I need help, I was hoping I could put it off until after I finished tx. I will call the doctor's nurse tomorrow, tell them I am not sleeping so that I feel sleep deprived etc.
Thank you o much for your reply my friend, I did write on my calendar "It is the medication" I am also putting signs up on bathroom mirror etc so I can remember that it is the medication that is getting to me.
Bless you. I really admire you and would like to try to follow your example
Billy, yu are right, I have not slept well since finishing the Incivek. It has been rough since then thought I have had good and bad days. Yesterday just felt so bad. I am now embarrassed I asked for help however I appreciate all the suggestions.
I think the doctors seem much more willing to treat the physical vs the mental. It is not like I want to tell someone I am having mental side effects :)
I will call nurse in am to ask for something to help me sleep. After my drug interaction in December I have been hesitant to take anything and that may have been wrong of me. Perhaps I will look up sleep deprivation and see what that might cause
Thank you Billy, glad to hear you are doing better after the terrible sx you had
Thank you for always being there for me. Yesterday I did feel over the top. After an incident with my family I did not feel I could control my emotions and it scared me. The next time I am going for a walk, no matter how cold it is. That should help me along with meditation and perhaps some sleep :)
How are you feeling?
Thank you again I had mentioned the cal, mag etc because sometimes a deficiency can cause tight muscles.
Thank you again
I feel better just reading the suggestions. I am much calmer today than I was yesterday.
Hi Dee....I am sorry you are going through all of this! You need to call your Dr Monday and tell him you are not sleeping and ask for Trazedone. A few yrs ago I was going through a death in the immediate family and my anxiety went through the roof. I couldn't sleep at all...maybe an hour here or there for weeks. I went to the Dr and he gave me Trazedone. It was the best sleep I ever had and when you wake up you don't feel hung over. You have got to get your rest!
Thank you all so very much for reaching out to me. I was so comforted by everyone's response. Yesterday was a bad day, I had been up since 3 am, today is much better. Perhaps I cried it all out.:)
All of the people on MH have kept me going with their comfort, support, advice information etc. I will always be grateful and hope that I will be able to help people when I get to SVR
I wish you all the very best and may we all get to SVR
Blessings on you, good thoughts coming your way
Dee I hope you are feeling better today, I hear myself in your posts, very sensitive, and I haven't even started tx for 2 more weeks
My fear is it becoming magnified , hearing what u r going thru and the answers from people, are so helpful to others like myself
Thank you do much for being so open and asking for help, I will save this thread for reference during my tx" it is the medication" good thing to remember light at end of tunnel
Also talk therapy is important , I see shrink I find it very helpful, was seeing him every 4 weeks, but am starting every 2 weeks while on tx
I think the sleep suggestion very very important!
Good luck C
Thank you so much for your support, for some reason I feel better today. Yesterday had some bad things happen and then the Pegintron shot started to effect me and it went on from there, I had heard the side effects from Pegintron could be worse and I did try to get on the Pegysus that I had the last time but no go. Perhaps that is the difference I am noticing. I received excellent advise and am going to take it all. All answers are great. I think I just let the boil and the incident yesterday really get to me, thus the anxiety and muscle pain and cramps. Still calling the doc tomorrow as I am not sleeping more than 3 or 4 hours per night, can't nap, so being sleep deprived doesn't help.
Thank you both so much for your comments they really helped me so very much. I do not feel so alone when others let me know they are feeling the same. I know I am lucky to have just taken injection 21. I guess I am like a few others who felt they had to stop 5 days or weeks before finishing. I guess everyone has a breaking point. I am not broken, I am continuing and I appreciate all responses
Again can-do-man, never even considered the doc taking me off. At one point he was concerned I had an infection which I did. No on wants to put me on antibiotics, they want to see if my "immune compromised system" can take care of it. I am glad they have the confidence that I do not LOL
I can sympathize with what you are feeling. When I was diagnosed with Hep C the end of 2007 I was so anxious that I could not think straight. I had family members not wanting me to treat and it was awful as I thought they would be more sympathetic and less judgemental. I was so afraid and in denial because I was not at risk for Hep C and had been tested back in the 90's. It will get better. This is my second time treating, the first time I was very afraid and then it was not as bad as I thought. In fact I worked through the 43 out of 48 weeks back then. This time I wrongly assumed that the tx would be much like the last one which was a triple trial. As soon as you do the initial injection and get through the first day you will feel much better. The anticipation is much worse that the actual event. After my first injection I would say about6 hours later I started to get fever and chills and so I took some motrin which helped a lot. Once you figure out how long it take to fell the injection then you could take it at such a time that you could sleep through some of the sx.
I wish you all the best. Yes, that is what I have been told, when I feel bad, "it is just the medication"
Thank you for writing, I myself, have printed out many of these posts to help me later.
Hi Dee, all I can add is that I've had the same kind of feelings, but not nearly as severe. I think mine are kept more moderate because my hepatologist insisted that I start an AD well in advance of starting the triple tx. In fact, he made it clear that he would not even put me on tx without the ad preceding it. Cymbalta has worked very well for me. Please do insist on better care, and hang in there. We are all rooting for you!
I'm now into my 4th week on PegIntron. I'm very tired most of the time. I have chills the night after the injection and feel awful on Saturday, with cramps, nausea, headaches and a bad taste in my mouth. But it largely goes away by Monday or Tueasday. Starting a few days after the second injection, I had a big boil on my ankle. I was prescribed an antibiotic for, it became much smaller after the 7 day prescription but there is still a smaller lump there. I'm developing a rash on my buttocks, and here & there on my legs, but I have been using a steroid-based creme and it's definitely helping.
I'm not really having any serious psychological side effects, except that I have so little energy that I get frustrated doing simple tasks and people around me don't understand.
I've been in tx 9 mths got 15 weeks left. Hang in there, I know all to well what you go thu! it's a harsh tx but i've been told how much better you feel afterwards, i'm just glad to know there is a site i can share my feelings and here about other people's feeling and side affects. GOD BLESS
Hi Dee, glad to see your hanging on even if it is by your big toe! My family has told me they wish I could sleep thru treatment or that they could just sleep through it. I have been horrible, unreasonable, un everything! I tried several anti depressants but nothing seemed to work very good. I have taken zanax but used it more as a sleep aid. Didnt work very good after a week. Went from .5 to 1.5 quckly ( that is 3 .5's) Got on Lunesta which helped with the sleep. Now my doc has put me on zyprexa. It is a mood stablizer. It is used for several different phycological conditions. I have been on it over a week and felt much better fairly quick. I hope it lasts! Now I take the Lunesta wether I need it or not and the zyprexa. I got the zyprexa more for anger management but my study doc is the one who suggested it. She has prescribed it for many people on treatment. Check it out or something similar. Hope you get to feeling better for longer stretches soon. I am doing shot 39 tonight . Putting it off until the last minute!
Now nearly finished of my 6th week on PegIntron. The RNA-HCV test after 4 weeks showed viral load of 44, down from about 700,000. They say anything under 100 is considered negative or an "Early Viralogical Response". The side effects don't seem as bad now, except for an itchy dry rash over about half my body and two more boils from the low white blood cell side effect.
I'm 57 and have stage 4 cirrhosis. The treatment is not as bad as I expected, except for the rash. I feel if I can make it to the last week I have a decent chance of success.
I know how you feel. I have 7 weeks left of tx. Since I finished the Incivik I have been feeling worse..But I am UND and have to be positive till the end of treatment..I am on zolft and xanax but the side effects still are there. I hope you feel better.
I also have similar anxities with a short fuse etc. Yours sounds pretty bad.
Proxac only works 60% of the time and it does not get to the root of the problem. Western Psychologist just treat symptoms, leaving the root of the anxiety untouches.
You do not have a normal situation due to the meds, which is a big part of the root. However, even though you cannot eliminate that root, you can learn the most important skill anyone can learn, on or off meds. That is how to get to the inner peace that you are capable of reaching, and learning hoe to relax your brain,( that controls your emotions and everything). The problem is that not everyone knows how to meditate the correct way. Most will tell you just to concentrate on your breathing.
Meditetion can be a tool for you but it is something that may take a few weeks to achieve the desired results ( a tool to use to manage pain and relax instantly). Take it with a grain of salt but if you want to hear anymore on the way to do this just post me.
I should have come back to this post to update and to thank every one. I made it through that stage of my tx, once I got some sleep I felt much better. I finished on Feb 17th. It was almost as it I had a few weeks left to go and I hit a brick wall and just freaked out, of course then I had to ask for help in my hyper sensitive state, sorry about that. I should have waited a day. The muscle tenseness is much improved.
Thank you all so very much for your response, it means the world to me
I have never known such kind , caring people. Thank you
OH, thank you so much for the update on me I do appreciate.
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