WBC count too low. Doctor says to stop treatment! It's my choice to make right now...

[cieritaqt]

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.

[susan400]

I think that this original post is an old one from like 3 yrs ago.  I just wanted to add that I've had Neupogen shots many times during my various treatments..., for the neutropenia (low white blood cells).  I had 2 Neupogen shots during this current treatment as well.  They do help to stabilize things and help you to be able to stay on regular dose of interferon w/o dose reduction.  I also had a NP tell me at Mayo clinic that eating shitake mushrooms is good to help your immune system with the lowing white blood cells/neutrophils.    When I eat them, I also wash them very well and only use them in cooking.  I wouldn't eat them raw or unwashed.  Susan400

[hepc4Sandi]

Hi, Welcome to the forum. This is an old thread, in order to get quicker responses to your question, click on the orange button above (Post a Question) and ask a new question. Please let us know about you in your question also (genotype/viral load/biopsy/Tx history, etc) so that we can better answer your question.

[desda]

hi im going to doc today I alsso have latent tb and hepc will be on interferon and rirailin pegasgy , so I hoping it ok start treatment then add tb antibiotic later  I c today at 2  I know my viral  load really high I just want to start been waiting a year got dednied 2 for salvadi so doing the older treatment been ready to  start for a while    keep in touch

[cieritaqt]

Thank you! this treatment has been tough off and on, but I am so grateful to feel well 70% of the time. Yes, my doctorn reduced my riba from 1000mg to 800 mg in October. I am still UND! I also use neupogen once a week. I am almost finished! March 30th is my last day! i am sooo grateful!

[karinleem]

OMG i know these forums are from oct But .I am taking a 3 regimin  treatment Inf/riba/victrelis   Victrelis is the newest drugs out
talking about low blood counts my WBC is 1.9   RBC  2.96  HGB  9.0  HCT  29.2  PLT 122   .And i go every week none of my riba  was stopped just reduded from 1000mg to 800 to see if that help .Dont get to up set if your working with a doctor they will step in befor they let you die ,

[karinleem]

OMG i know these forums are from oct But .I am taking a 3 regimin  treatment Inf/riba/victrelis   Victrelis is the newest drugs out
talking about low blood counts my WBC is 1.9   RBC  2.96  HGB  9.0  HCT  29.2  PLT 122   .And i go every week none of my riba  was stopped just reduded from 1000mg to 800 to see if that help .Dont get to up set if your working with a doctor they will step in befor they let you die ,

[nygirl7]

I am very very glad for you Cieritaqt - thank God there are people on here who have been around a long time and know what they are talking about.  Without them, I know I never would have SVRd and treatment was tough enough without their invaluable advice!

[cieritaqt]

OMG you guys! My WBC count went up to 680 without using Neupogen. therefore, I have it on hand in my refirgerator in case this happens again. Other than that, I'm feeling great today! What a scare! I'm so so so glad I did not listen to the on call doctor! Thank you all so much!

[MagTX]

I just gotta say that I agree with all of you all... these docs that are left in charge to manage our treatments when our treating docs go outa town is just plain scary.  These docs know so little yet they can really mess us patients up with our meds and treating schedules.
I bet if this on call doc would have been in one of our shoes as a treating patient he would not have taken his own advise.

Cieritaqt, I'm happy everything is working out so well for you and that you followed your own gut instincts to continue and not listen to the doc's poor advise.  I think I had bone pains with using both Procrit and Neupogen, it wasn't too bad though and numbers came up really fast...   good luck and hang in there!

[sandysf]

Completely agree.. while I know we should not give medical advice,  I feel this forum is more knowledgeable than 99% of PCP's and probably 80% of Gi's!   If it were up to some of these docs, many of us would fail treatment.  

[nygirl7]

I think most on call doctors are PCPs who know about as much about HCV as Urgent Care Walk In place doctors.  A doctor should know that Neuts bounce around quite often and .4 is not that low, certainly no where near low enough to risk the entire course of treatment at week 3.  While we sure aren't doctors we do know more about this disease than 99% of primary care docs as I have seen it.

Cieritaqt note that the Neup will work quickly but you might not even need it for long - when my neuts went down my doc said wait a week and we'll retest and we did and it was back up over .5 and I never needed Neup for all 72 weeks.

[frijole]

cieritaqt
I am so glad you posted your talk with your doctor and that he would not have recommended stopping.  Also even better news that you have the neupogen.  Some people  notice a little bone pain injecting.  I really didn't but after I was done taking treatment, my hemotolotist had me continue the neupogen until my ANC came up more.  Then, without the masking of the other drugs, I did notice bone pain with the injection.

Note to susieS2010 - you are right that I was not taking into consideration the TB factor and I did pm ciera and we did discuss this further.  You are also right that we are not doctors.  I do have issues with an on call doctor giving advice for hepatitis C treatment, however.  I believe we are probably more informed about this than they are.  Thanks - I like to be kept in line.

frijole

[ann61]

I am happy things worked out for you.  I am sure you are going to feel much, much better within 24 hours of your first neupogen injection.  

Good luck!

[cieritaqt]

I got the Neupogen. It's here with me at work. i am waiting for my CBC result from last night. As soon as my doctor calls me, I'll inject it to bring the WBC up! :)... you are all amazing. I had a dream last night that like 10 of us were at my house, having a Hep C support group mneeting. It was great! Wish we could in real life. Ciera

[pjhep80]

my WBC is 2.6 my doctor has not said anything about stopping...

[Trish77]

Sorry for the double post......thought I'd forgot to click send so took the opportunity to do an edit...LOL.  So I'll take the opportunity to say again...good luck to you. :)

Trish

[Trish77]

I'm glad it worked out for you, a difficult decision to make.  Have you and your doc discussed neupogen?  With you being only at 3 weeks and having an ANC of 400 at this point, this issue coming up again is entirely possible and I'd at least have the neupogen discussion with your doc to determine what she is or isn't willing to do in that regard and be ready if the "Go" circumstance arises with regards to neupogen.  Good luck with this.

Trish

[Trish77]

I'm glad it worked out for you.  I would have chosen to do what you did but could never have suggested it.  Have you and your doc discussed neupogen?  With you being only at 3 weeks and having an ANC of 400 at this point, this issue coming up again is entirely possible and I'd at least have the neupogen discussion with your doc to determine what she is or isn't willing to do in that regard and be ready if the "Go" circumstance arises with regards to neupogen.  Good luck with this.

Trish

[OdinLovesLife]

I am so glad it worked out for you and that your gut instinct was right.

Best of luck from now on. Strange as it may seem maybe this will actually help you get through TX. I bet you have talked over everything with her and have her ready to look after you now!

[beeblessed]

Oh good!  I didn't have a clue, so I am glad you posted and ultimately went with your gut.  Praying your doc gets things balanced out for you.

[ann61]

Glad to hear that you got things resolved and that you did not stop tx.  Hang in there!

[belle19]

i'm so glad that everything worked out for you.  keep a positive attitude and good luck with tx.  keep in touch.   belle

[willbb]

Good news.. I think the issue that had some here  a little unsure( I know I was) was the complication of the TB...glad it worked out
Will

Hey Unc...good to see ya

[uncledudeness]

my WBC has been1.9 since week 12, and i'm at week 38 now. i was told to stop tx cuz my hemoglobin went down to 7. hopefully i will start up on wednesday. you made the right decision. telling you to stop tx cuz of your wbc being low is crazy. you still had room to go down. also dose reduction should be the first discussion. just my 2 cents. you have to take charge of your own destiny with this.