Oct 05, 2011 -
comments
I have had a lot of mishaps during treatment. Any one alone might not be that big of a deal But one thing after another it seems for me.
1. I was not told by anyone at the study about the 20 grams of fat with the incivek. At the second visit I asked Dr. about it and she nodded her head yes that was true. They only gave me some crackers the first visit and just said make sure you eat something.
2. I was not told by anyone at the study that my high blood pressure med Lotrel 10/20 was even on the list that is effected by incivek treatment. My bp went down very low so I stopped taking it. I told Dr. about it and she said yes, don’t take it. It has never been addressed again. My blood pressure is back up high so I have started taking the Lotrel 10/20 again.
3. I was told by study nurse that the timing of Riba dose was not important that I could take it all at once each day if I wanted. Then I was told by her to keep my regular dosing schedule.
4. I was told by study nurse that I missed a dose of incivek when she was counting the meds, and I know I did not. She said it was ok not to worry that I had to only be 80% compliant. I am under the impression that is not true with incivek.
5. I feel like the study was very slow in addressing my oncoming severe anemia, even though it was obvious that my hgb levels were dropping very rapidly. Quicker action should have prevented me from reducing the riba and interferon.
6. I was not told by anyone at the study to watch my bp while taking Procrit.
7. I was not told to stop or adjust Procrit when hgb went over 12 . I had to bring it to study nurse attention. Since they did not adjust the Procrit as my hgb levels were rising, they had to completely take me off. Then I have been starting to become anemic again. in the 8's range and had to restart the procrit again.
8. I was put on tramadol for bone pain. Doctor was going to add a 2nd AD Wellbrutin to my Zoloft which is known to cause seizures when on Tramadol. I had to bring it to her attention. She said ok lets not do wellbrutin then. Then the next visit she asked me how I was doing on the wellbrutin .
9. When I started weekly CBC’s, 3 times I had to call the office for them to send the order over when it was suppose to be a standing order.
10. I was put on potassium for 5 days and told to get my blood work done on the following Friday at quest diagnostics. When I went in there was no order.
11. When my amount of interferon was reinstated to 180mcg, I was the one who had to ask about it. Dr. response was, ok we can do that now.
12. I was dryly informed by email from that I had to do 48 weeks of treatment instead of 24. I understand this is a trial, but I think that should have been a personal call so I could have talked about it to her. Had questions answered etc.
13. I had my own private blood tests done at week and 4 and 8 and they do not agree with the study tests. Mine suggest no detection theirs do suggest detection at week 4 and 8.
14. When I was first having my blood work done at the screening they had to call me back 3 times because they kept using the wrong needle and my blood kept hemolysing.
15. I was told by study nurse in an email that my 12 week PCR had to be undetected in order to continue. So that meant that I was undetected. Am I? That does not even agree with the study protocol which is
Week 4 or Week 12: Greater than 1000 IU/mL Discontinue INCIVEK and peginterferon alfa and ribavirin
16. Needles given with prrocrit were shorted 1, and the last one I pulled out to use was 1-1/2 inches long! so needless, to say I wasnt able to do my shot that night. went to my reg doc and got a dang needle.
17. I take a statin, I had to change statins and go the lowest dose while on incivek. at week 16, four weeks after I stopped incivek, I ask the doc should I go back to a regular dose of statin now, and she said yes, after incivek you have no more restrictions. I think taking a statin is important if your suppose to. I think she should have told me at the end of week 12 to get started again and let me know I have no more restrictions. geeze...
18. I was sent an email today saying to up my dose of Riba to 800 from 600. I have been on a full dose 1000mgs since September 2 per doctors orders. I sent an email back to the dr. saying that and she sent me back an email saying she couldnt treat me properly if I didnt follow her orders. I feel like I want to scream!!!!!!
I am so far into this (week 21) that I feel like I cant move to another doc right now. I just have to stay on top of them. and keep taking the meds. I had a labcorp quantasure done at end of week 20. I just dont trust them! I dont care if it costs a 1000.00. I'll pay it out.
sigh
other than this baloney, I am doing "OK" i did get sick the other night, first time in a while and my glands swelled up in my neck, front this time. but went away a few hours later.