Excellent! Great news Mark and news you needed after the stress of the lab mix up and the dose reduction. Hang in there...I know this is a much needed boost!
Well, got my 12 viral load --- remember I stopped the telaprevir after 11 weeks. Heptimax result <5 ... i.e., UNDETECTED. YES! Now the next viral load will be very telling as I skipped the riba for 3+ days to get my hemoglobin back up. Started it again this past Tues. and am getting a CBC and CMP tomorrow. Next viral load I imagine will be in another 2 weeks or so. Thanks for all your good vibes! I enjoy being negative insofar as viral tests are concerned. I happen to enjoy that!
Best, Mark
Yeah, well, my Hubs had it easy with that Trial..it was Interferon free,and only 12 weeks, so he had it so much easier than you and I, but still, he had that 1,200 mgs Riba, so he felt it.
Hey...that is great news that your HGB is back up :) But how frustrating, about yr labs getting messed up twice, and you had strong intuition about that.
Well, back on to your Riba, but I hope you hang in there longer. I'm not sure how many studies have been made, about the 12 week Incivek route.
I noticed Emily the Mod but up a Kidney Function Tracker today~ have a great day Mark, I'm very proud of you for all your hard work and your positive attitude.
Hi Katy. Thanks for sharing. Wow, your husband's hgb was/is alot higher than mine. Mine went back up to 9 from 8.6 last week. My creatinine has continued to decrease and is in the normal range and my GFR further increased to 71 (53 was the lowest). My doc's theory is that the telaprevir was impairing my kidneys so they didn't clear the riba enough and it therefore continued with the hemolysis which is why my hgb was so low. He want me to start back to 600 mg. tomorrow and get another test on Friday. In the meantime, still waiting to get the heptimax from Wed's draw. Called Quest again and somebody dropped the ball AGAIN and didn't 'do the add-on request' as they indicated they would. Amazing incompetence! Doc broached the possibility of ending tx soon saying for such an early response (2 wk und) some studies have indicated 12 weeks of tx is sufficient. We'll see how it goes with the heptimax I guess. Keeping my fingers crossed.
I will be praying all goes well, Mark. My husband had another blood draw last friday as well. I will see if his blood values normalize. I was quite horrified to see the creatinine clr was elevated thru-out his Tx, but the Research Dr didn't ever comment on it. My hubs didn't even mention the urinary discomfort, as he was more worried about having a heart attack (his hgb went down from 13 to 12, and it made him feel strange, I think)
His Dr had okayed him to reduce his Riba, but he thought he'd "tough it out", but I would have tried to pressure him to reduce, if I'd known he had pain in the kidney area.
The Procrit shots kept me at 9, and I reduced my Riba at 19 weeks, from 1,200 mgs, to 800 mgs, and at the same time, discontinued my weekly Procrit shot, which I had begun taking at week 9.
So, 9 weeks later, at my 28 wk EOT labs, my hgb was at 8.8~ The strange thing was, I felt so much better, from the Riba reduce, so I was shocked to see my hgb had dipped even lower.
Yep, you understand correctly. My GFR and creatinine improved after stopping the telaprevir. He wanted me to temporarily stop the Ribavirin on Friday to assess my hemoglobin which went down to 8.6. Getting a STAT draw tomorrow and will discuss with my doctor the results. Should be interesting insofar as GFR and creatinine are concerned. We hadn't discussed Procrit yet --- I'm kinda nervous about it.
Katy, I also have some minor discomfort in my right kidney...
PS: Have you asked your doctor about Procrit for your low hemoglobin.
Great to see that your GRF went up and your creatinine went down. They can fluctuate. I know my GRF did fluctuate during treatment even though I stayed on the same Riba does and the same Inf dose throughout Tx.
Mark, if I understand you correctly, your GFR went up and your creatinine went down PRIOR to stopping the Riba for 2 days. Also, if I understand you correctly, the doctor stopped your Riba because your Hemoglobin dropped to 8.6 (and you vere very fatigued).
It sounds like the Riba was doing a number on your kidneys, so I think your Doctor was smart to be cautious. When you start up at 600 mgs, then you can monitor your GFR and creatinine clearance very carefully, I hope you will get extra lab draws for this. What good is the "cure" if it causes kidney failure?
My husband was in a 12 week Trial, with some Abbot meds, and 1,200 mgs Riba, and I noticed his GFR was low and creatinine clearance was elevated. He also had burning when he urinated,and pain in his kidney.
The Riba is some strong stuff~
Thank you both for the comments. Last blood test, a week after stopping telaprevir, Quest lab did a HCV antibody test instead of a PCR --- really annoying incompetence! My hemoglobin suddenly went down to 8.6 --- it had climbed previously from 9.1 to 9.4. Given that I was exceptionally fatigued, the doc decided to do another cbc this Monday and stop taking the Riba over the course of the weekend. Right now I feel a whole lot better. I'll probably start the riba at 600 mg again on Monday. Oh yes, my GFR went up to 61 and my creatinine went down into the normal range so that's good. Waiting for my 12 week PCR ... Quest said they could run it on the remaining blood --- I wonder though if they'll mess that up as I don't know if the sample was refrigerated....
I know Ribavirin is eliminated by the kidneys, have you been Riba reduced at all?
Sometimes fluctuations in these values can imply dehydration or urinary infrequency (not going urinating enough). Plus Telaprevir can cause elevated levels of creatinine in the blood.
http://www.netdoctor.co.uk/liver-and-kidney-problems/medicines/incivo.html
My eGFR, BUN and creatinine fluctuated throughout treatment. In my case I had to have a consecutive fluctuation with a combination of all three values for a certain period of time in order for an intervention to be considered. This is as opposed to one set of labs a value was within the reference interval but the next time it was not. It also matters if you are taking other meds. In my case another med I take could have been a factor.
This is one reason as Pooh points out the best person to analyze these values is a doctor who is familiar with your entire medical history. I can attest to the fact that it is easy to arrive at inaccurate conclusions by isolating a lab value and reading about what drives it rather than viewing in context with other values or facts.
Be sure the Nephrologist understands the side effects of the HCV meds you are on as well as all other matters that could have an influence.
I hope you follow this through and post in this thread when you have more info. I hope this all ends up being OK.
Take care :)
Thanks for the comment. My last blood draw of 8/14 didn't show the BUN level directly, but the BUN/Creatinine ratio which was 13 and within normal limits. Tomorrow I get another draw and PCR and with not having had telaprevir for a week now, the results should be enlightening. I have had some mild kidney-area discomfort recently and yesterday an ultrasound of both kidneys. Will be speaking to my doc tomorrow ... we'll see. Before tx, by eGFR was 92 and creatinine was also normal. My doc seems to feel the changes are a bit unusual and indicated he may get a consult with a nephrologist.
My eGFR was in the 50s for most of my treatment and it is currently at 59.
However, my BUN and Creatinine stayed within normal levels. I did ask my Cardiologist and my PCP about the eGFR and they both said they were not concerned because my BUN and Creatinine were both normal. I am, however, keeping an eye on the eGFR. I may seek another opinion in the near future.
I notice that your Creatinine is elevated. Is your BUN elevated too? Have you discussed this with your doctor? You could always seek the opinion of a specialist, a nephrologist.
It is my understanding that actual kidney damage cannot be reversed, but elevated blood levels do not always equate with actual permanent kidney damage. I think if it was me I would seek the opinion of a specialist.