Hi..I'm new around here..Low blood platelets are keeping me from my treatment

[Lady E]

I began Combination Therapy on July 13th. I have cronic Hep c, type A-1. After the 4th week, I was told to get off the Ribavirin due to low blood platelets.  I continued the Peg-Intron for one more week until my doc told me to get off the shot as well. He said my count went from 130K down to 60K.  I've had 3 weekly blood tests now and they are telling me that my platelets are critically low. Isn't there something my doctor should be doing for me to build that back up????  I was finally getting used to the treatment at the 5th week, and now I had to stop it.  Is this common?  I just want to kill the beast now that I've done it and found that I can somehow deal with this treatment for 48 weeks. I'm wondering if my doctor might be inexperienced in this type of treatment, and do you think I should get a second opinion?  Thanks, Eileen

[cuteus]

unfortunately many drs still discontinue tx when the blood counts go down and are afraid to be aggresive (aggressive) with this tx.  you did not mention  what your biopsy results were. if you have mild damage, you have a little more time than those with advance stage disease.  one great site to read and print from to show your drs is projectsinknowledge.com, it has various articles on management of the patient on tx,
such as this one:
http://www.projectsinknowledge.com/Init/G/1603/index.html
inform yourself well to present your case, if you want to finish what you started. You might need to search for a more aggressive dr.
I had three before I ended my tx.

[Kalio1]

Welcome to the forum, sorry you have Hep C. We all either have it or had it. How low were your platelets? You could be right and the doctor isn't very experienced with treating Hep  and that can affect you so much. I have "low" platelets too and I am on week 48 so it is possible, but mine aren't very low.
Do you now what yours measured at?

[FlGuy]

I'm also platelet challenged and will go thru treatment (TX) again soon.  I went to a very experienced hep c doctor who gave written instructions to the local doc who will administer the treatment do over.  He was very specific with respect to platelets, allow them to go down to 30 (which is 30,000 in the scale that you described in your level).  There is a drug out there (Neumega) which can raise platelets but it's not receommended, nor frequently used, with hep-c treatment. Most likely, your doc won't use it.   Many doctors will use great cautiuon when dealing with these meds for hep c, they are powerful as you know.  Other docs, those who have a lot of expereince with hep-c, realize that a more aggressive approcah is needed and push the envelope a little more. It's unfortunate that you had to stop so soon but it's probably better than to have been stopped many more weeks, or months, into treatment.  It may be a good strategy to find a doc who has a lot of hep-c experience, make a new plan that includes dealing with such situations and then give it another go if treatment at this time is imperative for you.

[mikesimon]

I'm sorry that you're having this problem. My understanding is that Peg-Intron and Pegasys are more responsible for the platlet drop than is ribavirin which is generally the problem with decreasing RBCs and/or hemoglobin. If I'm correct the ribavirin decrease might not have been appropriate but I don't know you RBC or Hemoglobin numbers. Different doctors follow different protocols with regard to platelet count. Some react once the platelets reach 70,000. More doctors worry when it gets to 50,000 and some are okay with 30,000 count. I treated with 24,000 and no one was concerend but I am a liver transplant patient and it seems as though they don't worry as much about us. Your decline from 130 to 60 in 5 weeks is fairly sudden and if I understand you right you haven't seen your most recent labs so they could be worse. Some people here have taken neumega and reported that it helped their platelet count some but I have had no experience with it and don't know anything about it. I'd try to sit down with your doctor and attempt to work around this problem without stopping or making big dose reductions. If you understand the risk and are willing to try and your doctor doesn't think the risk is unreasonably high he may work with you. Platelets do jump around some and yours may increase in a week. Mine dropped from 180 to 66 in 8 weeks and then without dose change went up to 77 in one week. They can move around and rebound some if you're lucky. Good luck. Mike

[SlideJames]

Welcome Ladye, you've struck paydirt! This forum is very informitive. I am new also,1a.
Haven't started tx yet, but getting ready. I've learned more in 1 month, from these "forum people" than an entire year on my own. These people will care more about you than some of your best friends, because they're in the "trenches". They know how you feel. Sometimes they ***** at each other over silly things, but pay no mind. Keep reading and posting. These total strangers will catch your fall, as they catch mine. they'd never admit it, but they all love each other!

Hope you all heard that!
Love, Slide James

[Kalio1]

Sorry about that, I missed where you had posted your numbers. My doc will go as low as 30. I believe you can have platelet transfusions but I don't know how available that is. So far I havent had to go there.

[tulsatime]

Hi and welcome. When I started treatment last time mine were 77. They dropped to 52 around wk 4 of treatment. Then back up to around 80. Mine hovered between 50 and 80 all through treatment. But they did not take me off. I am starting again since I relapsed  and mine are at 70 now. In my opion, you need another doctor. Hope this helps, Take care and Good Luck, Debi

[sfbaygirl]

My platelets jump around week to week. One week they will be 70 the next 114, so I hope they aren't basing your stopping tx on one test.

[GoofyDad]

Mine started at about 120. Dropped to 40 or so, then would seem to cyle between about 40 and 75. I also believe it's the interferon that suppresses the platelets, not the riba.

[Lady E]

This forum is awesome!! I'm so glad I found all you guys..at last, people I can relate to as far as killing the beast.  I have decided to try another doctor whom I had seen 2 years ago when I was first diagnosed with Hep C.  He seemed much more knowledgable, just farther away in distance.  I have an appt. with my current doctor tomorrow..I will probably tell him all of my feelings about his possible lack of experience in this deal.  THANK YOU ALL for your opinions!!! ((Hugs to all)) E

[Bill1028]

During my first round of treatment my platelets bottomed out at 35,000 at 6 weeks, and my doc wanted to reduce the peg to 135mc(I didn't).  The doctor said the body is still adjusting to treatment and the platelets should rebound.  He was right, the platelets did stabilize between 60 to 80 through the balance of the 48 weeks.

Here is more information on what lowers platelets:

http://www.itppeople.com/warnings.htm

Warnings- Drugs and Other Substances that lower Platelet Count
Below are a list of drugs and other substances that may reduce blood platelet counts in some individuals. Reactions vary.

According to an article by Dr. James George, "Quinidine, quinine, sulfonamides, nonsteroidal anti-inflammatory drugs, and gold compounds were among the most frequently reported drugs..." (that cause thrombocytopenia).See http://moon.ouhsc.edu/jgeorge for more information.

This is another reason why most doctors don't want us to take herbal products during treatment.

[Lady E]

Hi everybody and thanks for your replies, support and sharing of info. After reading your replies to me yesterday, I just felt SO much better knowing that people just like me can share this stuff!  I'm still smiling about it. Also, after seeing how everybody posts their blood test stats, ALT, etc. I realized that I didn't even understand most of it..(another reason to decide to change doctors, because he should have provided and reviewed all of this information to me..am I right???) Anyway, I made an appt with a new Dr. today..for next Wednesday. This is my original Dr when I was first diagnosed with "The Beast" about 2-1/2 years ago.  He was great, and specializes with Hep C's.  At that time I was working in NH so he was convenient to go see from work. But when I left that job, and 2 yrs later decided to have my liver re-biopsied to see if I needed treatment yet, I found a new doctor in my home town for convenience's sake.  I guess this was probably a mistake *sigh*, but I'm actually thrilled to be going back to the dr. I liked. I HATE that I had to stop treatment after 5 weeks, and I'm not ready to give up on it.  After all, it took me 2 years to think about it.  When I was initially diagnosed with Hep C, I was told I was "on The Fence" for needing treatment, and because of my busy lifestyle, he advised me to get another biopsy in 2 years...so I did.
BTW, for those who asked..My Platelet levels are down to 60 from 130.  My current dr. says that my history shows a below normal level through the years, but nobody ever paid any attention to it.

OH! And I read where somebody mentioned Oprah in one of the forums. I just wanted to mention that about a month ago, I emailed her asking if she could do a special on the virus and treatment of HepC. I haven't gotten a response and wonder if I ever will.  Cmon Oprah!!!!  I think it would be awesome to have some of our information and opinions on a special show, namely Oprah.
Keep smiling!!!
E

[upnair]

My mother was diagnosed with hep c and I am worried. She has low platelet count of 68 with 4wks of retuxin iv treatment. She has blood test weekly.  Dr. wants to start her interferon combo treatment next week and next day try the retuxin treatment for her platelets again. She has had a sonogram of her liver and a nuclear scan but they have done nothing else. Everything I have read suggests a liver biopsy, should she have one before she starts this treatment? Dr. doesn't even know what is causing her platelets to stay low. I want her to go to a Hep c dr. but she says she doesn't have the money with no insurance. My sister and I have offered to pay for another Dr. Is this standard with all Dr.s ? I am worried that she doesn't have all the info she needs. Could someone please help me, give me some advice ? I am very worried about my Mother. Thank You so much.

[Bill1954]

Hi there, this is an interesting topic; you should repost this question in a new thread by scrolling to the top of this page, and clicking on the green 'post a question' button near the top. This will get lost in this two year old thread,

Bill