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jasper
Is it because of your anc count? Because that is not so low as warrants a reduction in my opinion. Mine went down to .56 before they ordered me to reduce, which I didn't do, and my neuts came back by themselves by the next week's test. Neuts are pretty dynamic and jump around a lot. Btw, I did eat a heck of a lot of shitaake mushrooms for the week before the test. I have no idea if it helped but I just though I would mention it..
Also, shouldn't the Hep Doc be the one making these calls, not your GP?
Has your GP given you a reason? Have you contacted your Hep Dr. yet?
Here's the thing. Most GPs know next to nothing about hep C. its treatment, or what the blood values on treatment really mean. Gastroenterologists know more, but many of them also behind the curve of them in terms of how to treat hepatitis C.
For this reason, the person who should be making call is not your GP, but your treatment doctor. And hopefully, your treatment Dr. is a hepatologist and not a gastroenterologist.
you should also know that stopping interferon, even temporarily, can have a negative effect on your treatment outcome. For this reason, it's very important that you try to straighten this out with your treatment Dr. right away.
As someone new here, you should understand that none of us here at doctors and that the following are very general statements based on the little information you've posted.
All the best,
Jim
He said to stop because of my platelets. My WBC has been this low the whole time. My HGB has been lower, but I am on procrit now.
He just said to stop interferon. Did not mention the ribavirin. I could afford to reduce the riba. Am on 1000 daily. But at 110 lbs, I could get away easily on 800. I am not in a trial. I am under the opinion that until my platelets hit 30, I can still treat, but I may need to reduce. I don't take my next shot until Monday, so maybe I will get the cbc redone Mon. a.m., and go from there.
Jean
So you need to advocate for yourself. Good luck
My GP isn't making ANY calls on my treatment. Just monitoring my blood draws...
Jean
Because if your help Dr. for stopping treatment based on the blood values alone, he may be doing it unnecessarily.
In this case, you should try for a second consultation with a liver specialist (hepatologist) ASAP.
Do you knowif your current Dr. is a hepatologist or is a gastroenterologist? As stated many gastroenterologist simply do not know enough about treating hepatitis C.
Jean
http://www.medhelp.org/posts/show/586333
Can't speak for him, but based on what he said in the link I just gave you, my guess is he would say continue on full dose. By the way, are you undetectable and if so at what week? Also, what's your genotype?
It's good that you're seeing a hepatologist, book from someone with experience there -- I've seen at least a half dozen over the years -- they are certainly not all created equal. Could be wrong, but it sounds like this fellow is a little too quick to pull the trigger. Perhaps, you want to find a more aggressive hepatologist. On the other hand, there may be other factors involved, so again this is just a general statement.
Good luck!
Jim
Its always worse to dose reduse in the beginning I´ll take it your a geno 1.
Its very good if you state those basic info on your profil, save us all a lot of time and its easier to help the more we know of your situation.
ca
Thanks for the link.
My problem is that the NP handles everything and goes by "guidelines". that is why I seem to always be second guessing my hep. dr. and rightfully so..
If you were to miss the interferon for a dose or two. Does this impact svr?
Jean
Hgb just dropped to the 8's again.
Riba is more responsible for low HGBs, I reduced recently from 1000 riba to 800.
Best of luck
Even a dose reduction in interferon is not recommended unless absolutely necessary. Again, see Dr. Dietrich's answer in the previous post.
If you can't get to your doctor directly, and get satisfactory answers, then get to another doctor.
The name of the game here is being proactive. There are probably as many as SVRs lost by bad doctoring as by the virus itself.
I realize the last thing you probably feel like doing now is making waves at your doctor's office, or trying to get an appointment with another liver specialist on very short notice. But frankly, at this point don't see what else you can do.
Good luck!
Jim
jasper
Go for it girl, you'll feel so much better. Otherwise you'll may always wonder whether you should have fought harder...
I have plenty of meds, and 3 docs monitoring me. GP, hep dr. (NP) and hematologist. I won't stop treating unless I have to.
The only issue here is the platelet count.
Thanks for your help.
Jean
jasper
My GP drew my blood and ran the results...saw how low my platelets were. called my hep dr. my hep dr's NP called back and told my GP to tell my to stop.
I have no other medical issues.
i just think my hep dr's NP operates by guidelines and did not even talk to the dr. Have had this happen with that office before. My hep dr. does not always get the info. Seems the NP is running the show.....that is why I have a GP and Hematologists monitoring me as well.
Jean
jasper
----------------
You may have misunderstood what I said. I agree with Dr. Dietrich's comments and I never said it's the same person, in fact I'm not exactly sure what you mean by that.
Well, I think you are right. You need to stick to your guns and push to talk face to face with Doc before you do anything like reduce.
I encountered similar situations several times and it wasn't until I could get face time with the Head Hep Honcho that I made any progress, and in the end, the Doc went with what I was saying not the NP. After it's your body and you know how you are doing and what you can handle.
Literally, the NPs sit there with a chart in front of them going this count is such and such and therefore this is what we do in this situation. Lol, I think that's the definition of protocol.
All the best!
Epi.
Jean
I'm willing to discuss reduction if I go any lower. But not stopping. Hopefully my platelets will be up on Monday!
Jean
Getting another blood test on the day of your shot is a great idea, as numbers are at their highest on that day. That is what I do as well. And the one day the counts were low is the day I did it 20 hours earlier.
Yes it is good to have the blood drawn just before the next shot and it does give you a very good indication of where your platelets are at as well as everything else. But if it is low say at 40 before the shot or at its highest peak, what is it after the shot? This is maybe where the NP or how ever is concerned in that it just may be below the 30 cut off point and even lower after the shot. I would venture to say it would be even lower given the downward spiral of the platelet counts in jt’s prior blood test so far.
I started at 251, down to 150 and stayed there awhile, then started dropping around week 4 to 120 for a couple of weeks, then it started down, 98, 92, 80, 79, 78, 66, 53.
now at 40.
Geter: I don't agree with jim at all on this one. I read Dr. D’s reply but it is not this person.
----------------
You may have misunderstood what I said. I agree with Dr. Dietrich's comments and I never said it's the same person; in fact I'm not exactly sure what you mean by that.
Jim, my meaning is that it’s all well and good in that circumstance but it is not jt57 and that’s all that was meant by it. But I do not agree with everyone pushing jt to continue with the interferon as we are not doctors and do not see what they may be seeing, if anything. Monday will come and she will see whoever and get another CBC and find that the platelets have started to come up because of the Procrit.
jasper
My hgb had come up ..into the 11's, and I was told to skip a dose of procrit. That was 2 wks ago. I did skip one. And here I am. HGB back down, wbc lower again, and platelets lower. I pray for higher platelets on Monday. and worst case scenario, dose reduction.
Treatment is nerve racking to say the least because of the many unknowns. Sounds like you need to get both of them together and have them stop jerking you around. The stop and go on the procrit is causing all kinds of problems. It seems like it may had just gotten started and then was shut down and never made it to the line so it may take some time to restart the marrow train again. I started Procrit at week 5 of treatment and stayed on it to the end and then some with no additional damage. Demand that you stay on the procrit through the rest of treatment and this latest episode should prove that out and make the case for it and you. It sounds like you were starting to crest the wave here a little bit and then was left in mid air, not good. The good news is if everyone comes to an agreement and you stay on the procrit without interruption things will settle down and being that you are UND since week 4 is a big plus if a reduction is recommended for a week to allow the surf board to get in front of the curve again.
Stay Strong be Long and ride dem waves!!!
jasper
I didn´t know procrit has anything to do with platelets!!!
Jt you got a point in that your doc has seemed two eager to stop medication before, a second opinion sounds appropriate.
If anybody knows anything about this plateletfall please chime because I think its impotent aswell as interesting.
And Jt thx for upgrading your profil best of luck i´ll be rooting for you big time.
ca
geterdone
Good luck to you. I hope it resolves well.
CA, procrit has nothing to do with your platelet level.
Jt cant be cirrhotic with a intial platelet count of 251 though I know woman has a higher rate the men.
Why is her platelets falling this much could it be that she is extra sensitiv to interferon in some way ?
and jasper, I became und between wks 8 and 11. not 4. at week 4 I was at 3k viral load. wk 8, 180 then und....want to stay that way!
stage 1 no cirhosis. good health otherwise.
thanks!!
JT
Anyway, just wanted to check in. We're in the same state, I've spent a lot of time in your city in the past. Best of luck with your Monday lab results.
be proactive
Jt, best to you in talking with your hepo. With that kind of drop and that soon i think you need some professional answers...... Wishing you the best.
cando
From http://www.drugs.com/ppa/oprelvekin.html:
“Advise that most patients who receive oprelvekin develop anemia.”
This is not hemolytic anemia that we develop with ribavirin, but it reduces hemoglobin just the same. Over the years of reading in here, I’ve only run across two people that have been Rx’d Neumega for suppressed platelets related to HCV treatment; and I don’t recall their treatment outcome. You might ask your doctor about it, and see what he says.
There is another drug; Eltrombopag, that has been in trial, and is near release that will stimulate platelet production. You might inquire about this also, however, I don’t believe it is commercially available yet.
Best of luck to you--
Bill
http://content.nejm.org/cgi/content/abstract/357/22/2227
LOW BLOOD PLATELET COUNT (Thrombocytopenia, low PLT)
Platelets help blood to clot. They are found in the blood flowing through the blood vessels. Platelets also line the inside of the blood vessel. When low blood platelet count is present, this layer thins and tiny drops of blood can leak through the spaces made when this layer thins, causing red dots on the skin called petechiae (pa-TEE-kee-eye).
Normal Platelet Count 150,000 - 400,000 cells/mm3
Note: Normal values will vary from laboratory to laboratory.
When low blood platelet count present a person is at an increased risk of bleeding.
Risk of Bleeding is based on the Platelet Count
100,000 - 149,000 cells/mm3 Little to no risk of bleeding
50,000 - 99,000 cells/mm3 Increased risk of bleeding with injury
20,000 - 49,000 cells/mm3 Risk of bleeding increased without injury
10,000 - 19,000 cells/mm3 Risk of bleeding greatly increased
Less than 10,000 Spontaneous bleeding likely
And yes, I also read that Numega is a rescue drug for this.
Perhaps you should see a haematologist?
Here is a link that has more info:
http://www.chemocare.com/managing/low_blood_counts.asp
http://www.netdoctor.co.uk/diseases/facts/thrombocytopenia.htm
AND Yes it does have everything to do with Procrit if used because of what?
geterdone
Thanks for all your help!
jt
Funny just found this viagra has something to do with platelets.
http://www.sciencedaily.com/releases/2003/01/030110193129.htm
BTW thx for the link jasper seems very informativ and easy to understand about platelets,
I have saved it will recomend other interested in subject to do the same.
jasper
jasper
WBC 1.7
LY 47.0
MO 10.5
GR 42.5
ANC 700
HGB 10.2
HCT 31.8
PLT 57
I did reduce my riba on Fri p.m. by 200. I am now taking 800 a day. I am to take my interferon tonight. my procrit again Sat. a.m. Waiting for my liver dr., and my hema to call back after getting these results and talk with me about what to do.
Here is my opinion.: I am starting wk. 20. My whites and anc is steadily dropping. My platelets are crazy. 40 on Friday, and 57 today? What's up with that?
I think I should stay on the 800 daily of riba. Cut the interferon to 135 instead of 180. Until all my counts come up some and level off. Then go back to full dosage.
I am afraid that if I don't, I could put myself in a position to have to stop completely. I would rather reduce, and stay in the game, than be out altogether. Not sure whether to introduce neupogen into the mix yet or wait a couple of weeks.
What do you guys think?
JT
I am tempted to not reduce tonight. You guys have got me thinking.....
jt
jasper
jasper
I made a deal with myself that if things didn't improve by the next week's blood count I would reconsider. As it happened, my numbers jumped back up and I have just carried on as if nothing happened.
I'm just relating my experience, not offering an opinion and certainly not giving any medical advice.
All the best with your decision :)
jt
so the next week I mage sure and spread them out...took the procrit 3 !/2 days after the INF, figuring the INF surge would be done and that procrit might work better not in its presense...
and sure enough the next weeks lab I was up again over a point.
I know that's not your whole issue, but lots of docs let platelets get quite low without stopping, The hepatologists that is...GPs know nada.
anyway, plenty of info in here for you to make a quality choice.
One thing I would wonder did you get a pneumonia vaccine, and if not I'd stay home and do my shopping by mail. I'm doing that anyway because of the anemia, but the lower the platelets the more chance a simple cold can turn into something real nasty so you want to keep that in mind.
Hubby has a bug now...and we are staying at separate ends of the house.
That's the only precautionary that I think is worth persuing since bugs can act very different in an autoimmune compromised person.