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told to stop interferon
Had cbc today.  wbc 1.8
                        anc  .8
                        hgb  9.2
                        plt    40

My GP called my hep dr. and he said to stop the interferon and have cbc next week.  In my opinion, I think we should be discussing reduction in dosage, not stopping.  But I have had this sort of issue with my dr. in the past....

What do you guys think?

Jean
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577132 tn?1314270126
Aaah, I get where you are coming from now, it's the NP that has said stop, not necessarily the Doc himself, and you are concerned that the NP is just reading the protocols of the box, so to speak.

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.
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you got it, Epi!  I think that is what is happening.  So at this point, I am going to continue taking my meds as usual, until I talk with my doc face to face.

Jean
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476246 tn?1418874514
Great decision, I think.
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jt,

I was told to dose reduce wks 6-7.  I complied because I was stupid and my doc was  going by the guidelines set forth in the medication insert for the peg.  Had I known then, what I know know I would have never done it.  Atlanta doc thinks that is what contributed to my not clearing by wk 12 and was very adamant that dose reduction was not necessary.  My platelets weren't quite as low as yours but they very low as well as my ANC.  I know you have to do what you have to do but it does sound like your doc has the same problem my local doc has which is cover his a-s-s in the event something happens beyond our control.  And had I listened again recently, I would have dose reduced reduced twice again, last week and the week before which I did not and whites are back to acceptable levels with the help of Neup.  Platelets, can't do much about that, but an aggressive hep doc will not make you skip doses completely, perhaps reduce to 90 mcg or 135 mcg but keep in mind you don't want to run the risk of a bleed so have to be monitored very very carefully.  Stick with it jt, don't let them jeopardize your chances of SVR.  Just my opinion, I've also been around the bush a few times with my doc.  I won this battle, he just doesn't know how I won it.  
Good Luck
Trin
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Thanks Trin!   My red flag was when he did not even mention reduction.  Just stop.  

I'm willing to discuss reduction if I go any lower.  But not stopping.  Hopefully my platelets will be up on Monday!

Jean
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The thought behind my comment about following the NP advice and stopping the interferon was given the history of the platelets downward spiral with the consecutive dropping with in each blood test to date. It seems that the Procrit has not fully kicked in yet and takes 4 or more weeks to start working, as you know. In jt57’s case it seems that she is behind the 8 ball momentarily and is playing catch up because the interferon is steadily inhibiting the production of the platelets and is heading into the danger zone and is maybe why she was advised to skip a shot to allow the procrit to get in front of the curve. Yeah, they should have started the procrit earlier but it is not an exact science in how one will react with these meds at any given time but shows a pretty good road may of where she is heading.  


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  

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Thanks Jasper.  You make some really good points for me to think about.  I really don't want to stop treatment, but maybe on Monday, my doc and I can come up with a plan.  I just feel the NP telling me to stop was a knee jerk reaction to my platelet count.   Dose reduction should come before stopping completely.

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.
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Good Morning jt, hope the morning brings a brighter day.

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


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388154 tn?1306365291
geter i think you are making a serious point here about the plate let drop never heard of such a drop before wonder what the reason for that can be, I started with 193 after 6 days they went down to 123 then one week later up to 163  after 2months 173 and the last months down to 140 and stayed there.

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
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388154 tn?1306365291
not impotent  the platelet fall it should be importent.
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Yeah, I hit a stretch of that also during treatment but the procrit helped some yet the Viagra put things in to prospective and even may have helped with the clearing of the virus. Ya know being seen by the T helpers and all that, lol.

geterdone
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559277 tn?1330622339
jt - I'm going to chime in and agree that you should see your treating doctor.  I just had nearly two weeks worth of crazy-making with endless calls - doctors offices (the people who answer phones and relay messages) - university hospital nurses and pharmaceutical reps. You should stop. You should continue. Argh! It took less than 5 minutes of face to face time with my doctor to fix the problem. I'd like a copy of the guidelines so that I could burn them.

Good luck to you. I hope it resolves well.

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Being cirrhotic my platelet levels are always low, before tx they always were between 80 and 90,000. during my last tx mine got as low as 30,000 and my hepo wasn't cocerned. Platelets are always lower during tx but seemed to bounce around quite a bit. Even off tx mine bounce quite often. anywhere from 70 to 100,000.

CA, procrit has nothing to do with your platelet level.
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388154 tn?1306365291
I thought so about the procrit thx for confirming.

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 ?
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Thanks guys.  You all make some really valid points.  My goal is to stay on treatment.  Even if I have to reduce for a bit.  

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
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do others not have this platelet drop like I have?  
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683664 tn?1330969924
I am just starting Wk 7 tx, so far my only problems with bloodwork have been anemia.  Who knows what 20 wks of tx will bring, lol?  But it's not funny, I know, it is concerning to have these lab changes, and esp when they affect not only how you feel but also your tx regimen.  I had a Riba reduction for 3 weeks, and that really concerned me as to how my virus would respond, though it did bring my Hgb back up above 10.  Since I'm in a study, I won't know any VL's till about the 6-month mark.

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.
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315996 tn?1429057829
I would agree with jimjim:
be proactive

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lapis, May i ask what study you are in?

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
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408795 tn?1324939275
Personally I just started tx and I don't know what I would do in your situation.  With that said I don't see a problem lowering your Peg dosage for 1 shot to see if you can get your platelets to go back up.  The reason I say this is b/c if you continue taking your regular shots and your platelets go down anymore, you could create more trouble than you need.  I also think that you may have to drop the Peg even more than half to have any affect with your platelets, or miss one shot even.  A couple of things are that Peg has the minimum life of a week, or 5 to 7 days.  Right now your system is probably over compensated with the Peg that you've already done weekly.  We accept and metabolize the Peg and Riba differently.  I really think you have to do something before this becomes dangerous and they take you completely off the Peg for awhile.  Alot will depend on the way you feel physically and not on how you feel about staying on course.  Sure, nobody wants to deviate from the program, however sometimes it becomes necessary because we don't know what health effects can arise if we don't.    Also, I'm sure if you google 'hcv treatment platelets' you will get some hits, maybe even get one that talks about platelets below 50.    good luck to you with your decision
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I read that Numega helps low platelets.  Is this true?
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My doctor does not use Numega for hcv patients, don't remember why though, i think there are alot of issues with it. There is platelet transfusions, but from what i was told its alast resort and only a short term fix.
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87972 tn?1322664839
Unfortunately, Neumega (oprelvekin) has its own side effects, one of them being to exacerbate anemia, among other things:

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
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87972 tn?1322664839
More on Eltrombopag (from 2007):

http://content.nejm.org/cgi/content/abstract/357/22/2227
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577132 tn?1314270126
My platelets have been steadily dropping since I started tx in May.  In June they were at 176, and now they are at 82.  It is marked on my blood reports as Thrombocytopenia, it is a common side effects of chemotherapy drugs.

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
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577132 tn?1314270126
I also noticed that my blood is being monitored for it's clotting time each time I have my safety bloods done, so perhaps yours is too.  And with the number that you have quoted you are at risk of bleeding without injury.
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Ok you two, the use of procrit stimulates what? and out of what comes what?

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
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http://cancer.emedtv.com/procrit/procrit-uses.html
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I'm with you in the procrit, jasper.  Makes sense to me that with increased red blood cells, I would have more platelets....right?  I am back on the procrit now, regularly, as of today.  Might consider taking one in the middle of the week, to jump start things.  When the procrit was in my system, all my numbers were up!  And I was feeling much better.    But because my numbers were up, my NP said to back off the procrit.  Should not have listened.  But I hate the procrit shots, so I guess I jumped at the chance to not have to take it.  Anyway, I'll get the CBC done on Monday, try to get in to see my hep dr., call my hema dr., and go from there.  I am supposed to take my interferon Mon. night.  I guess I will wait and see what to do...

Thanks for all your help!

jt
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388154 tn?1306365291
Ok you one!!

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.
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Apologize guys for the smart *** attitude in the last post I reread it myself, Oops. sorry.

jasper
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at the bottom of this page it will give you links "Other related discussions" that may help you with the platelet delima.

jasper
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OK!!!!!  Here are me cbc results from this a.m.
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
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excuse me!  my....not me!
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96938 tn?1189803458
Although the doctors rule (sort of ) - if it were me I stay on full dose of peg and riba.  The ANCs, if they get low enough, are fixable with Neupogen.  If hgb tanks, there's Procrit.  Although there's nothing like those for platelets you can see that the platelets bounce around.  And, as long as the platelets stay north of 30 or so the hemotologist should not have an issue.  Treatment is rugby, not badminton.  It's a contact sport so get in and mix it up.
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144210 tn?1273092382
I'm with FlGuy on this. Your numbers look just fine for tox. Mine are worse.  I would not reduce at all. Be firm with the doc; this is your life.
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I did talk with my dr.  He felt that with my wbc and anc, and the platelet issue, I should reduce to 90 tonight, instead of 180.  But no neupogen yet.  I told him I would comply, but I am only planning to reduce to 135, not 90.  My hema said not to worry about neupogen, and he would not worry about the platelet issue as of yet, but of course the call is my liver doc's.  

I am tempted to not reduce tonight.  You guys have got me thinking.....

jt
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The procrit is starting to work again, from 40 to 57 is a good sign.

jasper
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Question, did you take the procrit shot this pass Saturday?  

jasper
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yes, I did.
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577132 tn?1314270126
When I was told to reduce my IFN due to low counts, I said I would, and based on information I found about other people's numbers, I didn't.  

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 :)
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yeah.  I think I have decided to not reduce tonight.  Give it another week and see how I do.
jt
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233616 tn?1312790796
you know one week I went lower on all the blood despite procrit...and they said, no big deal, it was just probably the time of week you took it..

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.
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no.,  did not get the pneumonia vaccine.  dr. did not want to give it to me, because my hgb and wbc's were low.....think you are right.  STAY HOME!
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you know my platlets have only drop to 97 wbc1.7 hgb/hct is all over the board but now they put me on neuprogen 1shot was friday plus procrit told them i dont want to lower my dose when i have only 3weeks left. but i do take pagaferion every weds. rivo daily 800 in am800 in pm but the neuprogen is nasty bad side effects to me worse than the other meds. but i do hear it does help i do hope so.  rockin516
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488823 tn?1218374167
I cant figure out why they would ask you to stop before giving you Eltrombopag which I was taken for a year and it worked good enough for me to finish my trial.I just finished in AUG. of this year and so far have no virus and during the whole year my platelets were stable considering I started with a low #. Hope you check into it.
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1654177 tn?1319842094
What do I do? My doctor is on vacation, and the on call doctor says to NOT DO my injection #3 tonight and stop taking Riba. My white blood cell count is 400, or 2.5, not really sure what the difference is, but it is low, and I am at risk for infection, basially have a low immune system. Anyway, I have my injection and Riba on hand, and I can either take it through the weekend, or stopp all TX and go to see my specialist on Tuesday and see if she will start me back up again. I feel great, I am so mad, and confused. Should I go against doctors orders and continue TX? What would my doctor do? I am on day 14, this is not fair. Please someone post something tonight so I can make my final decision. I'm so torn and indecisive. .
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190885 tn?1333029491
sometimes i think the doctors have to do whats legal...i would keep on tx...your blood work sounds ok to me...if you feel fine why stop???..thats what i think....billy
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We are not doctors, but my ANC has hovered around 400 during most of my 17 weeks,  docs told me to skip one shot last week I ignored.  Lot's of proof that ANC can safely get down to 325,  my experience is that most GI's are clueless on treating Hep C.   I personally would NOT stop treatment.  I have a close friend battling leukemia, her ANC is regularly around 400 and they don't even give her neupogen!  
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My platelets dropped to 25 platelets  at week 4 my hgb was at 10.8 I was put on procrit and by week 8 my platelets jumped to 85 platelets my hgb dropped to 10.4. My doctor said that some doctors would have stopped my treatment. I told him I knew he wouldn't....:)

I started with only 60 platelets so 85 was pretty good to see. Week 12 results coming soon. Can't wait to see results, but I've finished the 12 week incivek. Happy to have made it to that point.
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