Aa
Feeling faint and panicky
Has anyone else felt like this? I almost passed out while driving to work this morning, and have had several panic attacks since. I ate breakfast and some candy in case its a blood sugar issue. I wonder if I need Procrit. My last blood work was 3 weeks ago and it was over 11. I don't know if it could drop rapidly or not. I have been feeling much worse and much weaker since the weekend. I'm waiting to hear from my study coordinator. I did not take my morning Riba. This is a scary feeling! Not going anywhere until I feel better. I don't think I should be driving.
Yes Annie, according to my personal experience, you are describing low hemoglobin. I could barely walk up my basement steps while doing the laundry and didn't dare attempt to vacuum. I'd walk up 3 or 4 steps, stop for a minute to catch my breathe, then another 3 or 4. I worked throughout tx but it took all my energy to drag myself out of bed, to work, and back home to my bed. At that time, I had a laptop I carried to work and my routine was to drop my laptop at the door because I did not have the energy to carry it (only 8lbs), then I'd park in the handicap space. Before you receive the Procrit, you really should be driven to the dr's office for that CBC. But if you absolutely must drive yourself (I can relate), then take greatbird's advice, pull over and throw that seat back!!! No need to harm yourself or anyone else. Cheers to Procrit!!!!
mine dropped 4 points in 2 weeks (or 3) and it was not a good feeling. Hope your doc gets it figured out and you feel better.
Denise
Denise
Well, I made it home and back into the sick bed. The drive home wasn't as bad as the one this morning, but it was kind of scary. The doctor never called either. I'm going to take Jims advice and call my Primary if I'm still bad tomorrow. My neighbor said to just get her to order labs. I can walk right into Lab Corp and get the bloodwork done. I will shoot an email to my study coordinator tonight so she gets it first thing in the morning and let her know I never heard from the doctor and still feel bad. I have my step daughter on stand by to drive me in case I'm out of it tomorrow. Wow, actually fainting and in public, that's really scary. I thought I was going to do it in front of my whole office this morning. I think I'm more worried about being embarrassed and scaring people.
To gypsy: My study is SCH 900518, with Ritonavir as a kicker. (Schering Plough).
Thanks everyone!
To gypsy: My study is SCH 900518, with Ritonavir as a kicker. (Schering Plough).
Thanks everyone!
For sure get your hemoglobin checked asap. Mine plummeted fast at the beginning of tx but then stayed put until nearly the end, and I got used to it.
Then it plunged into the nines towards the end of tx and I started fainting big time. Real fainting and in public places.
Mine plunged fast twice. I wasn't expecting it the second time and neither was my nurse.
Then it plunged into the nines towards the end of tx and I started fainting big time. Real fainting and in public places.
Mine plunged fast twice. I wasn't expecting it the second time and neither was my nurse.
Is your study Bocepravir or Telapravir? Mine is Telapravir. Both are said to have promising results.
Hello Annie,
I may be the guy you remember posting about throwing up and passing out. It happened to me after my RBC got down in the 7's. I had my 2 1/2 year old with me, had just gotten her buckled in her car seat and it happened...face up in the rain in a restaurant parking lot. My study docs monitor me pretty closely (weekly). I had to have a transfusion and have felt better since although my Riba has increased again and I'm feeling it. It is extremely scary and whenever possible I have my 17-y/o or 15-y/o drive me. When low RBC, be careful getting up too fast. Your BP does crazy stuff between laying, sitting or standing to try to adjust when low RBC and it can result in the passing out. Although it *****, it is, as others have said here, normal stuff to US. Just be cautious until it passes.
Joey
I may be the guy you remember posting about throwing up and passing out. It happened to me after my RBC got down in the 7's. I had my 2 1/2 year old with me, had just gotten her buckled in her car seat and it happened...face up in the rain in a restaurant parking lot. My study docs monitor me pretty closely (weekly). I had to have a transfusion and have felt better since although my Riba has increased again and I'm feeling it. It is extremely scary and whenever possible I have my 17-y/o or 15-y/o drive me. When low RBC, be careful getting up too fast. Your BP does crazy stuff between laying, sitting or standing to try to adjust when low RBC and it can result in the passing out. Although it *****, it is, as others have said here, normal stuff to US. Just be cautious until it passes.
Joey
Unless I missed it in the thread, I'm very surprised that your medical team didn't have you come right in for a CBC and specifically a more recent hemoglobin as your last was 3 weeks ago which is light years away esp in the beginning of treatment.
Personally, I'd call them right back and ask if you can have your hemoglobin taken right away. If not, call your general practitioner and ask them.
Theories of why you feel the way you do are fine, but nothing beats a blood test to back it up. If for some reason your hgb has dropped significantly then you may have to look no further. Sometimes you have to be proactive and lead your medical team no matter who they are. These are very busy people with many patients to care for. Fortunately, you only have to care for yourself.
-- Jim
Personally, I'd call them right back and ask if you can have your hemoglobin taken right away. If not, call your general practitioner and ask them.
Theories of why you feel the way you do are fine, but nothing beats a blood test to back it up. If for some reason your hgb has dropped significantly then you may have to look no further. Sometimes you have to be proactive and lead your medical team no matter who they are. These are very busy people with many patients to care for. Fortunately, you only have to care for yourself.
-- Jim
My 12 week is 25,000. My baseline is 2.2 million. If I was UND at week 12, I would finish out 48 with SOC. 2 log drop wouldn't have changed anything here. The criteria is either UND, >1 log drop, either stay on SOC or cross over, or if <1 log, quit treatment because it's not likely to work. The study drug is a protease inhibitor, which I've heard may be very promising. I don't know if I'm getting it under optimum conditions, and I guess they don't either, thus the study. Still waiting on that doctor...grrr.
I did not clear by week 12, but did have >1 log drop. I just missed a 2 log drop by about 2000."
Did they let you know at week 12 just how close to UND you really were? Generally with us SOC people...if not UND at week 12 they let us extend to week 72 (for geno1 which is what I had to do) so that our bodies have enough time to train our immune system to fight off any straggling mutant virus that might be left and then kill them dead (like Raid!) ;)
What are their intentions for people like you who are not UND at week 12?
Extension helped me get SVR, without it I'm not sure I would have succeeded so I wonder what they do in trial (sorry I haven't read about your particular trial before).
Did they let you know at week 12 just how close to UND you really were? Generally with us SOC people...if not UND at week 12 they let us extend to week 72 (for geno1 which is what I had to do) so that our bodies have enough time to train our immune system to fight off any straggling mutant virus that might be left and then kill them dead (like Raid!) ;)
What are their intentions for people like you who are not UND at week 12?
Extension helped me get SVR, without it I'm not sure I would have succeeded so I wonder what they do in trial (sorry I haven't read about your particular trial before).
I went on the ADs then off again, since I found they made me tired and disconnected. I probably didn't experiment with the dose level enough. Others have said that they work best when you get the dose just right.
I second the call for valium. Since I'm on treatment, my GP will pretty much give me anything I ask for, sometimes just over the phone. I've got a big bottle of valium (which BTW under my insurance has no co-pay so it's basically free drugs). I don't use them very often, since they also mellow me out too much, but sometimes I find them helpful. And it will be nice to have something until the ADs kick-in. They officially take two weeks although many folks on this board say that they feel relief quicker than that.
I second the call for valium. Since I'm on treatment, my GP will pretty much give me anything I ask for, sometimes just over the phone. I've got a big bottle of valium (which BTW under my insurance has no co-pay so it's basically free drugs). I don't use them very often, since they also mellow me out too much, but sometimes I find them helpful. And it will be nice to have something until the ADs kick-in. They officially take two weeks although many folks on this board say that they feel relief quicker than that.
Sorry your having so many problems. I had the anxiety attack at week 11, but it only lasted for a few days. I was able to take Xanaz but had to take a higher dose than usual for it to work. Try to get a few Valium to get you through. This may stop in a few days, like it did me. Haven't had one since. When the anxiety happened I called the trial and asked for AD's but as it turned out I didn't need them anyway. Hope you can get them though.
When your hgb falls everything your experiencing is normal. Just walking across the room wears one out. I found after climbing stairs I would have to sit down and take a little rest. It helped.
Please keep us posted with your next blood results.
When your hgb falls everything your experiencing is normal. Just walking across the room wears one out. I found after climbing stairs I would have to sit down and take a little rest. It helped.
Please keep us posted with your next blood results.
I am in one of Schering Plough's studies, too. It is the one mentioned on this forum recently. I think it is SCh 95018 + Ritonavir (the number might not be exactly what I typed, but its close). I am going in a cross-over arm because I did not clear by week 12, but did have >1 log drop. I just missed a 2 log drop by about 2000. They have about 7 arms on this study, with different doses, and timeframes of adding the study drug. I'm not worried about paying for ADs or benzos. If they make generics, and they do, I get them for free :) It will actually be week 15 by the time I start the study drug because it takes a couple weeks to get the PCR results back. They go to Chicago for those. She gets my other bloodwork within a day or 2 and will get a call on the weekend from the lab if I need Procrit. The doc is supposed to call me after 5. I'm going to bug him about this. No one should have to feel like I have felt lately, especially earlier today.
When you get into a study you feel like you have really lucked out, not having to pay the cost of the standard meds and bloodwork. I have excellent insurance,too, and have been happy to have it for the Neulasta and the occassional extra bloodwork to be done in-house in an hour instead of waiting 4 days to get results back from wherever the heck Schering Plough is.
Call and find out if the study provides the rescue meds. You know they want you to succeed and make their drug look good, so may provide one or both. Which study are you in that does not start the investigational drug until 12 weeks?
I am sure that none of them provides AD's free.
Call and find out if the study provides the rescue meds. You know they want you to succeed and make their drug look good, so may provide one or both. Which study are you in that does not start the investigational drug until 12 weeks?
I am sure that none of them provides AD's free.
nygirl: my mouth is hanging open from the cost of your Procrit!"
Thank God I kept working here even when my hemo dropped six points in ten days I kept coming in, (except for three days in 72 weeks when I was fainting too much to drive). If the insurance was not a part of my compensation, I would have lost my job or my course of treatment. As it was, I made as much money as one of the SVPs that year almost I figure!
I thank God for Procrit, if not for it I'd be decompensating still and probably at stage 4 by now rather than being SVR and not needing an eventual transplant and all that medication to sustain it (which the insurance company would pay for but not my extension - go figure).
Thank God I kept working here even when my hemo dropped six points in ten days I kept coming in, (except for three days in 72 weeks when I was fainting too much to drive). If the insurance was not a part of my compensation, I would have lost my job or my course of treatment. As it was, I made as much money as one of the SVPs that year almost I figure!
I thank God for Procrit, if not for it I'd be decompensating still and probably at stage 4 by now rather than being SVR and not needing an eventual transplant and all that medication to sustain it (which the insurance company would pay for but not my extension - go figure).
I'm on a study, too, but not sure if they cover the Procrit or not. I had to hit insurance for Tramadol for my headaches. I have really good insurance, but I'm sure it has its limits. I agree with newleaf about reducing meds as opposed to rescue drugs. I'm not quite cleared at 12 weeks, and I should be kicking in the study drug after my appt. next week. I will quit if I keep feeling like this with nothing for relief. I would kill for a valium or an ativan right about now. I may ask the doctor for a small script, maybe 5, of one of those, just to get me through until the ADs kick in. If I remember right, they take a little while to build up in your system. Valium works immediately. I'm a little nervous about driving home later. The pharmacy is about halfway home...
nygirl: my mouth is hanging open from the cost of your Procrit!
Procrit is provided by the study I am in but Neulasta is not. It's a good idea to get these things approved by the insurance company before you end up needing them as it can take a week or so of faxing back and forth between doctor & ins. co. If you pull down way low with no access to rescue meds, they will reduce your meds and that should be avoided, especially if you have not cleared yet; might allow the virus to get going again.
I saw the Neulasta on the net for $3000 per shot and it's $1500 on my insurance site. But talk about do the trick; brings wbc and neutrophils up(mine go from 600 to 12,000 overnight) within hours of the injection, leaving you guaranteed safe for 3-4 weeks, usually longer.
I worry a little bit about how casually we recommend the rescue meds. They can make treatment more successful but where on earth do people get this kind of money?
Procrit is provided by the study I am in but Neulasta is not. It's a good idea to get these things approved by the insurance company before you end up needing them as it can take a week or so of faxing back and forth between doctor & ins. co. If you pull down way low with no access to rescue meds, they will reduce your meds and that should be avoided, especially if you have not cleared yet; might allow the virus to get going again.
I saw the Neulasta on the net for $3000 per shot and it's $1500 on my insurance site. But talk about do the trick; brings wbc and neutrophils up(mine go from 600 to 12,000 overnight) within hours of the injection, leaving you guaranteed safe for 3-4 weeks, usually longer.
I worry a little bit about how casually we recommend the rescue meds. They can make treatment more successful but where on earth do people get this kind of money?
I just get dizzy when i sneese...i have to stop whatever im doing just in case i dont hit the deck...otherwise im fine...lucky....i will admit tho...my finger joints ache a little lately
What's the deal with the Procrit and insurance? Must be really expensive
It's about $6,000 a box of ten vials. I was using two a week. At first the insurance wouldn't put it through. Thank God my pharmacy really worked at figuring out how to get it through (they ended up getting me the generic epogen to go through and did it by the day instead of the month or something). That is why it's good to get that part started right away. Usually the doctors office has someone who specializes in insurance but in my case the pharmacy helped.
I was on it for 69 weeks so the cost (I ended up after a year or so of doing every five days rather than twice a week) probably was like $80,000 for just procrit.........if my math is good which it sure ain't but you get the idea here.
It's about $6,000 a box of ten vials. I was using two a week. At first the insurance wouldn't put it through. Thank God my pharmacy really worked at figuring out how to get it through (they ended up getting me the generic epogen to go through and did it by the day instead of the month or something). That is why it's good to get that part started right away. Usually the doctors office has someone who specializes in insurance but in my case the pharmacy helped.
I was on it for 69 weeks so the cost (I ended up after a year or so of doing every five days rather than twice a week) probably was like $80,000 for just procrit.........if my math is good which it sure ain't but you get the idea here.
Annie,
You are right on track and have figured it all out. The light-headedness is related to low hemoglobin and is common. They can start you on Procrit if you are near 10 or lower. Be aware that it can take up to 3 weeks (1 shot per week) to bring hgb up to a more comfortable level. The bizarre mood thing is related to the interferon and AD's can control it. Although everyone warns about depression on interferon, the mood effect could also be anxiety or anger. I take a half dose of Lexipro and it controls anger without making me sedated. You may not need a full dose either, since liver damage can effect the way you metabolize drugs.
You are right on track and have figured it all out. The light-headedness is related to low hemoglobin and is common. They can start you on Procrit if you are near 10 or lower. Be aware that it can take up to 3 weeks (1 shot per week) to bring hgb up to a more comfortable level. The bizarre mood thing is related to the interferon and AD's can control it. Although everyone warns about depression on interferon, the mood effect could also be anxiety or anger. I take a half dose of Lexipro and it controls anger without making me sedated. You may not need a full dose either, since liver damage can effect the way you metabolize drugs.
I'm glad I have prior experience with ADs. They do help, and are just temporary. Since I am not normally a depressed person, they did not put me on one at the beginning of treatment. I did mention that when I talked to my trial coordinator. I know some people do get it as a precaution, like nygirl mentioned. I do think my hgb might have dropped, too, but if I can remain calm, I think I'll make it through to next week. I do feel better than I did earlier.
I had similar experiences about week 10-12.....anxiety attacks each night after work. Feeling faint at times ( which DID coincide with a low Hgb for me). I went on a low dose of AD's and after some dose adjustments, found they really helped, much to my surprise.
Hang in there! Pam
Hang in there! Pam
What's the deal with the Procrit and insurance? Must be really expensive. I am waiting on the phone call from the doctor. She said he probably won't call until after 5 pm, but is probably going to prescribe something for the anxiety, and most likely an anti depressant. I've cut my level of activity down to near zero. Walking up the steps or to my classes is as strenuous as it gets. My step daughter is finishing up the yard work I started. I almost passed out trying to finish that up the other day. I don't think they are going to do bloodwork until next Wednesday, but if I can get something to help with the anxiety, and just lay low until then, I think I'll make it.
I just heard from my trial coordinator. She echoed Marc in that it's not Riba causing the anxiety attacks, it's the Peg Intron. The doctor is going to call me later about adding medication, most likely anti depressant. I just took my Riba, by the way. Don't think I've missed a dose yet.
Call your doc and get a CBC right away. During week 2 - 3 I dropped six full points from 15+ to only 9 in just over ten days. It was too drastic a drop for anybody to handle and I kept passing out, even once in the shower. The procrit takes time to work but generally they do expect you to be under 10 - if you are feeling this badley you should contact the doc and just get the test. Every day counts when you need the procrit and sometimes it's hard to get it through insurance and that can take time so you don't want to wait.
Also my doc put me on an antidepressent a month BEFORE treatment to combat anything that might happen. It helped me a lot so you should talk to him about that if you are not on one already. Xanax or something temporarily to help with the panic attacks might be possible but again you gotta let the doc know just what is going on.
Also my doc put me on an antidepressent a month BEFORE treatment to combat anything that might happen. It helped me a lot so you should talk to him about that if you are not on one already. Xanax or something temporarily to help with the panic attacks might be possible but again you gotta let the doc know just what is going on.
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