My husband started Pegasys/Ribavirin on June 3rd. He's been suffering the exhaustion, insomnia, restlessness, nausea, and now is starting to have mental confusion (yesterday) that is really bothering him. He had to actually leave work yesterday because he could NOT think straight. It's happening again today? He's tried to calm down, but that doesn't seem to help. Is this maybe because of the insomnia or is this something he can expect for the duration of the Treatment?
Thanks cuteus... He left a message for the Doctor's office to ask them for slip for the bloodwork. It usually takes 3-5 business days to get any response. When he bagan treatment his Doctor said that at three months he would have blood work done to see if he was responding, but never mentioned any blood work to check hemoglobin or any other type of monitoring along the way. I told him last night to specifically request it, and that if his doctor won't provide him the support we feel is necessary that maybe we should see if his primary care physician can monitor his health while he is on treatment.
OMG!! you got to be kidding me!
most GIs do a monthly cbc check to catch the anemia before it gets out of control. Some do more frequent ones early in tx, because people do get anemic a few weeks into tx. Get this ASAP.
the three month check is for PCR mostly. Is this dr experienced in hep c?
Perhaps I shouldn't tell you this, but the same cognitive fuzziness your husband is experiencing has dogged me through 53 weeks of treatment. Short-term memory, word access, ability to concentrate for long periods of time, all shot. it seems that our brains on interferon are definitely on the scrambled side. (Hold the toast!)
I know... that was my reaction too when my husband told me that he only has to get a blood test done at 3 months... I was like..."No, no, no my dear... You have to have a CBC done, call the Doctor's office". Yeah, apparently this GI is very experienced in HepC... We don't like him very much because he always seems so pompous. You take off work, sit in his waiting room for an hour, he rattles a bunch of technical **** off to you, then you're out of there. If you have any questions later you have to leave a message for his assistant and wait 3-5 days for a call back. That's why we would rather have our Primary Care physician monitor him. He is very down to earth, explains things in layman terms and is very caring.
on that word access thing; I found myself typing busy for visit one time, and on many occassions I typed a word that sounded like it, but not at all related. It diminished after tx, but it still happens on rare occassions. I do a lot of proof reading nowadays. Stay well, my friend, BTW,how is Silvermoon?
See.... I though he should be being monitored more closely. I think he is anemic... He's pale, weak, exhausted, dizzy ocaissionally. I've been telling him... "This is toxic stuff, shouldn't you be monitored?" We will see how quickly the Doctor's office returns his call.
During the first weeks of treatment, I had a level of anxiety not ever experienced before in my 58 yrs. I started taking Lexapro, an antidepressant. A full dose knocked me on my a**, but a half dose works wonders.
Brain fog...I have had huge trouble not missing riba doses--they ask "don't you have the daily pill case?". Of course--believe me--it's still very possible to miss doses. I now set my wristwatch alarm for the evening dose, and always leave the pill case in the middle of my kitchen counter WITH the lid open on the last dose taken. That forces me to think about the day & dose and not assume things while tossing pills down my throat. I have to work twice as hard to think half as much.
I also had really debilitating lightheadedness for a couple of weeks--felt like I would simply pass out. Fortunately, this symptom went away. I was surprised that I didn't have low hemoglobin...or maybe it just dipped low during that time and by the time I got in to get my cbc done, it was ok again.
Your dr sounds like a creep. I would work on finding a new one.
Mental confusion is very real on tx. I can't tell you how many times I'm talking to somebody to convey an idea and I just lose my train of thought. I've also left food in my car (last night it was ice cream!) after coming back from shopping. All of this is well beyond normal forgetfulness. I think procedding slowly and being methdical helps keep things organized. On tx, procedding slowly is the only option anyway.
Hahahahaha... sucks about the ice cream! I'm hoping that things will pan out a bit once he gets a little more used to everything. Right now, he panics when he can't think straight and then is anxiety ridden. He's okay at home, but at work it freaks him out. He has a very crutial position right now building equipment for a HUGE Naval contract, so the pressure is on! I quess he'll need to figure out a few coping mechanisms for when it happens.
LOL Califia summed it up nicely,,,,Scrambled! Very common on the meds and I still after being off,,,,have blank thoughts at times! Your hubby needs to be monitored in beginning,,,, monthly,,,Very important first 6 months of tx to see how he is doing and reacting. Get a new Dr. I changed up at 6 months tx and finally got a dr that knew what was going on. Good luck to you both!
It's good to know that he is not alone in this... I will have him ask the doctor for some help with the side effects. Sorry you had to suffer the mental confusion as well. Perhaps an AD would help keep the panicky feeling at bay. That seems to compound everything. Thnx
I wholeheartedly agree with cuteus about getting the bloodwork done soon. I also started Pegasys/CoPegasys on June 3rd and I already had a blood test checking for anemia (on June 17 ) and will get those results today.
I had seveve mental confusion for a couple of days but this seems to have let up, but I am not 100%. I have lots of fatigue but my most troubling symptoms have been some evening heart palpitations. I have a lot of ups and downs but my symptoms seem to be improving since I recently added more protein and calories to my diet ( I had a very low fat diet for the last 7 years ). I also have a bike machine at home and found that getting a moderate workout helps a whole lot ( I spend about 45 minutes on it ). Naps also work well for me, especially after lunch.
Yeah... I agree... we may need to shop around for a different Doctor. We are hoping that his Primary Care Doc can monitor him and he will only need to see his Gastro for his milestone PCRs. If we don't hear back from the doctor soon he may just need to call our Primary Care Doc for a CBC at the very least.
I'm glad to hear that your mental confusion seems to have let up some. Leads me to believe there is hope. :) It seems like you two are right on track with each other. He too seems to get heart palpitations. It kept happening last night and he felt like he had to keep getting up and walking around. We should probably start on some kind of exercise routine to see if that helps. Geeeez... it seems like as soon as you start getting relief from one sx another one creeps in... He is finally starting to get some relief from the nausea, so we are happy about that. A good night's sleep would probably do him wonders... anyone know where we can get one... hahahahahaha
Everyone's advice to get his blood checked ASAP is very important. In my 4th week of treatment I had all the symptoms your husband complains of and mine was due to my hemoglobin dropped way too low....VERY FAST from week 3 to week 4! This is unpredictable. My doctor for the first 3 months had my blood labs ordered every 2 weeks and now at week 21 I'm every 4 weeks as things seem to have stabalized (low levels but stable). You will be tired of hearing everyones "brain fog" stories but at least they keep us entertained here! We all seem to have some degree of this and it seems to be "normal"for the majority....some worse than others. I seem to get brain fog about 2 days a week.....never the same days.... I can't seem to feel like I've woken up from sleep....very annoying! Those days I try not to put too much on my plate of "to do's"....I've gotten in the car many times to go to do an errand and can't remember when I get on the road where or why I'm going somewhere. Parking lots are good for re-grouping your thoughts and reminding yourself of WHAT I was doing! The good news about these sides in my experience is that none of them seem to last.....one thing happens, dissapears or subsides when another one raises its head. You have to just go with the flow and keep a good attitude. Get the blood work done and let us know what happens. Until then I'm thinking of you both.
I had standard bloodwork done every 2 weeks. It is really important to monitor how these meds are affecting you. Just as an example, in one week my white blood count went to a little low to ending treatment low - luckily my dr. prescribed Neupogen so I didn't have to stop in my last few weeks of treatment.
Talk about brain fog. I sound like my grandmother did. Calling everyone 4 names before I get it right, can't remember names of movies, etc. Once someone called for the attorney I work for and I asked his name and instead of announcing the call to the attorney - I just put the caller on hold and went about my business instead of telling my boss who was on the line. Of course, my boss yelled out of his office "who is on the phone" five minutes later!
Good luck to your husband. Tell him to take it easy. It's a ride.
if he is getting anemic, you don't want to overexert in the exercise department. Severe, chronic anemia can bring cardiac problems. When I tried "making up" missed riba doses, I would get some palpitations also. you won't know until the cbc gets done which one is causing it.
We actually heard back from the Doctor's office yesterday (miracle) and they are sending him all of the lab slips he will need, so he can just go to the lab down the street and get his blood drawn. I am anxious to see what frequency they will be for. Man, you must have died when you realized you never gave your boss the phone call... Maybe we should start calling it Brain Smog instead of Brain Fog, because it stinks... lol
Scott... Yeah, my husband is in his fourth week right now. He was pretty much pale as a ghost this morning. I hope the lab slips come soon. The Brain Fog posts are great! Kind of makes him feel like he's not alone in all of this. That in itself helps. You are right... It's never the same couple of bad days and you can never predict how you might feel. Right about when he feels like he is not doing so bad, BAM! We are very glad to be getting all of this wonderful support! It really does make a difference. Thnx
Yeah... the anxiety... WHEW! I love what you said... "I have to wrk twice as hard to think half as much" Isn't that the truth! The doctor's office is so pompous that when they returned his call about the lab slips they never even asked how he was feeling. Can you believe it? He wants to find out if our Primary Care Doc can do his regular monitoring and then he only has to see Dr. Pompous for his milestone checkups. If that is not an option, then I think we will have to shop around for another Doc.
My PCP would be clueless as could be about monitoring a person for hepC. My feeling is that this might not be a very good idea. If your husband has some of the problems that may arise during treatment, the ignorance of the dr could cause him further difficulties. Here are some examples: when your hemoglobin gets too low, your dr should know to prescribe you procrit (to boost your hg) and not reduce your ribaviron except as a last resort. Some drs just reduce the riba right off. When your wbc's get too low, they can prescribe you neupogen to boost them back up...but some drs just want to reduce your interferon dose. Dose reduction may jeopardize your killing this virus. Another thing that happens in a small percentage of cases is loss of one's thyroid. If this should happen, you do not want your dr to take you off treatment! You can take thyroid hormone along with the hepC treatment.
The point is not to have anything jeopardize your treatment. Do it right, do it ONCE.
I would try to find a good gastro with plenty of hepC experience or a hepatologist. You can always post here to hunt someone good in your area.
I found out that i had hepc in 2004 and started interferon with all classic symptoms seemed to work but mojor
Discuss with gastroenteroligist pawned me off on interns and a spouse with no idea and no will to understand
Now 9years later virals tur the roof again and major thinking and processing problems cant think straight
Career going down the tubes loosing my job is there dose this disease qualify for disabilty any info would be helpful
Thanks michigander 311
I'd suggest to start a new thread with your question since the last post in this thread was from 2005. Sounds to me like you should be seeking a qualified hepatologist to guide you and there may be a trial for you that would keep your costs at a minimum. Some are in a similar financial situation that might have suggestions.
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