After only a week and a half of treatment a blood draw has shown a low platelet count. They've scheduled a doc appointment Monday. That's all I've been told.
I understand what platelets are and their function, etc., what then does this mean for treatment?
Do they reduce dosage?
Is it possible they will pull me off treatment?
I am stage 4, with cirrhosis.
I hope you won't get pulled.
Being stage 4 a low platelet count is not surprising.
Did you see your baseline platelet count? I wouldn't expect to see a significant decrease in just 1.5 weeks.
You know that a very low platelet count as a risk for bleeding.
The questions are:
1) How low is your platelet count?
2) What is your doctor's threshold for stopping treatment?
My doctor allowed me to treat with a low platelet count which many doctors would likely have been very uneasy with - they probably would have stopped treatment.
I think my doctor looked more at prothrombin time than he did platelet count.
Really it's up to your doctor and what he is comfortable with but I think most doctors treat as long as the platelet count is at 75,000 or higher and a lot of doctors are comfortable with > 50,000.
I forgot to mention that there is a drug Eltrombopag that increases platelet count and has been used with HCV patients. I am not sure whether its use is off label but it was earlier. I think someone mentioned that they were in a trial that used Eltrombopag but I am not certain of that. Apparently the drug increases platelet count sufficiently to allow patients to treat who otherwise would have had to stop treatment.
I don't know the platelet count. They don't exactly volunteer information and I'm still new enough to this situation as not to know what to ask, keep track of, etc. I feel very lucky to have found MedHelp and this group. Reading peoples stories, doing some follow-up is slowly giving me an education.
When I went to the next visit I asked for copies of my last labs, then entered everything into a chart. It made me feel a little more in control. Guidelines in my TX were to reduce interferon when platelets got down to 50,000. I was reduced for 2/3 of TX, but reduction started after I had been clear for a while, and had no effect on me staying clear on PCR's.
They will not pull you unless they try for a while to get them back up into safe range and are unable to do it. Avoid the antidepressants Celexa and Lexapro as they may lower platelets, especially Lexapro. Not an issue for most folks but use something else if you have low platelet issues
Thanks newleaf09. I'm sure you are right, or at least hope so.
As it turned out I've had a kidney stone for an entire week prior to that test. Just passed it today actually. Do you or anyone think it might lower platelet count?
Haven't come across that connection but think it is worth doing an internet search to see if there is a relationship. Your platelets should not drop so early in interferon treatment. That should take longer than a week and a half.
IFN reduction is a common way to increase platelets. I was on reduced IFN for 2/3 of TX for low platelets. I was not reduced until after I had cleared the virus from blood and had no ill effects from the reduction. Just caused a little anxiety waiting for the first few PCR's after the reduction.
I'm thinking of starting a new thread as soon as I pull myself together. IFN = Interferon?
2 days after the second shot I had a blood draw. Today they called me in. My platelet count is 63,000. I was told there is no diet, there is no medicine to bring them up. After blood draws on the 28th and after the holidays I'll be called in once more. Though he had said in general discussion they let it go into the 20's, he later said the cutoff was the 50's. When I cross that magic number they will take me off treatment. After that it's a liver transplant. I said the chances of that are nil. He did not reply just turned his head. I have never been offered a molecule of hope. Nothing about restarting later, nothing. So in essence if the count goes down further they will send me home to die. I must tell that this is a what used to be called a charity hospital. Treatment is free, drugs are through a program of Roche. This is to say I don't think I have the options others who have good insurance might (no complaint against them, just stating it as a fact) so a suggestion like see another doctor isn't possible.
Sorry forgot to add all the blood draws prior to starting treatment were all below normal 90's, 80's, barely 100.
I wasn't stage 4 but 2 weeks in my platelets dropped to an unsafe level and they were going to stop the tx but within 2 more wks, they started to come up on their own and I was able to go on and complete the tx. I remember it well, it was a couple days before Christmas last year and I was so sick at the time I wanted an excuse to quit.
Make sure you keep all copies of your labs and if it continues to drop fight for the helper drug.
Dose reduction of IFN (interferon) is different from dose reduction of ribivirin. After 4 weeks your body gets pretty saturated with both. Studies show that reduction of riba can decrease the odds of SVR (sustained viral response). It's always best to be at full meds but you can still cure the virus on reduced IFN. I was overly responsive to IFN and by the end of TX, at 28 weeks, I was down to 30,000. I started at 136. I STAYED reduced starting at 8 weeks. Only got back up to full dose a few brief times. Ask for dose reduction rather than being stopped. They will still have to give you a few weeks more just to see if the dose reduction is working.
I don't think my count should have been so low (even though I did have cirrhosis...it had been 154 6 weeks before TX) , but I was prescribed an antidepressant that was a platelet killer, Lexapro, and had a lot of bone marrow suppression by the IFN. DO not take either Lexapro or it's sister drug Celexa. Also look at the info for any other drugs you take for 'reduced blood counts', the euphemism for drugs killing platelets, neutrophils or hemoglobin.
Treating at a charity hospital, you will not get eltrombopag and since it is not labeled for use with HCV therapy, you won't get it from the manufacturer for compassionate purposes.
This will sound crazy but the day before your next blood draw, go out and run around the block. I know it sounds impossible to do on TX, but exercise is the only thing that will artificially cause higher platelet levels. My bone marrow stayed suppressed after TX and the count only got anywhere near normal (127,000) after I started going to a gym and working out. Hang in there. I'm pulling for you.
Just for the record - I am definitely not recommending this approach to a low platelet count.
Exercise isn't the only thing that will raise platelet count.
Tissue trauma, infection and inflammation will also increase platelet count.
After my motorcycle wreck my platelet count soared and that was when I was taking drugs that cautioned that decreased platelet count is a common side effect.
After the trauma resolved my platelet count returned to normal.
not to hi-jack this thread but newleaf, I thought it was the inf that should stay constant - do you have any thing I can refer to about this? Not that I should worry at this point (my six month SVR test will be in April) but I did a riba reduction at one point during tx.
I also got low levels of platelets as early as you, if not earlier. They cut me down to 90 µg peg, half dose, and I finished the whole treatment with that dose. They tried to increase a bit after a while, but I dropped under 50 right away. If you stay under that for a longer period you can damage you bone marrow, so they will have to follow close up on that. I did bloodwork every second week. Good luck!
James, based on what I can understand about your current health situation I have made a few comments that I hope you will find helpful.
You mentioned that your before treatment platelet count was 90's, 80's, barely 100.
That you dropped to 63 isn't abnormal especially if your platelets were in the 80-90 range.
You seem to be confused as to why your platelets are so low. Have you asked your doctor about this?
At what stage is your liver disease? Platelet count can be used as a surrogate marker for cirrhosis (stage 4), with levels less then 125 to 150 suggestive of cirrhosis. Did you have a biopsy? Do you have cirrhosis? If you do has cirrhosis I would assume it is compensated as you would be able to treat if your liver was decompensated. Even if you have cirrhosis you can live many years before needing a transplant. Cirrhosis is NOT a death sentence.
I have compensated cirrhosis and my platelets dropped to below 20 after 12 weeks of SOC treatment. Since the treatment was not working (virus count never dropped more than 1 log) I was able to stop treatment after week 12 and didn't suffer any health issues having had my platelets so low. No bleeding issues or anything.
Each doctor has their own cutoff point where they don't feel comfortable going beyond during treatment. They don't want to cause more harm then good. Beside they may be legally responsible should they harm you.
Don't give up hope. There are a number of us on this forum in the same position. Time running out as our liver disease advances and no ************** that works for us. Even if current SOC treatment had worked for me (which it doesn't as I am a non-responder) I don't have enough platelets to go through current treatment. Normally my platelets are around 75. I am waiting for the new PI drugs. Plus a drug that will be able to keep my platelets from dropping into dangerous levels. Hopefully they will be available in the next year to year and a half. According to the latest trial data, Telaprevir has a 40% chance of SVR for me and other non-responders regardless of cirrhosis. With current treatment the chances are much lower. About 10% as far as the data I've seen.
What you can do now:
* Try to continue treatment for at least 12 weeks if possible. This will give you very important information about what category of responder or non-responder you are. Then when the new meds arrive you and your doctor will know which treatment if most likely to work for you.
* Ask you doctor what stage is your liver disease at.
* Stay as healthy as possible. No alcohol.
* Get a copy of all of your medical records.
* If you feel your current doctor won't help you, see if there are other hepatologists or gastroenterologist at the hospital. There should be more than one. Who is his backup?
* Are there any teaching hospitals or transplant centers in your area?
You said no chance of a liver transplant. Why?
Transplant is always the last option if nothing else works. It is not a pleasant thought I know, but we are lucky to have that option available. Remember not that long ago a successful liver transplant wasn't an option. Plus there are many advances being made to get rid of HCV in the new liver. So never give up hope. Yes it gets difficult at times. None of us ever planned any of this. But it can give you a new perspective on life and help you to appreciate every day and all the good things we have in our life. And that is not a bad thing.
Hang in there.
There are many good people on this forum that will help you get through the tough times.
Thank you all for your comments. newleaf09 - my running days are perhaps behind me .. well ok, I never had any running days :) .. BUT since you posted I've gone back to walking, did two miles, will build on it as weather permits. Also will add weights and I can borrow a stationary bike. I'm spitting blood these days, even before treatment it would come and go. Maybe if it goes away after a few days of exercise that will be an early indication the platelet count has gone up a bit. Thanks it gives me something to shoot for.
HectorSF - the Doctor, a new one every visit, tried to explain a connection between the liver and spleen. The spleen is likely the one using all the platelets. I know I've read a bit about it in these forums but haven't had time to go back and really pay attention.
I am ESLD stage 4 with cirrhosis. From the hints I get it's pretty advanced. I had a biopsy, one comment was 'your liver is orange.'
Don't know if it's compensated or not. I have ascites, edema, fatigue, but that's about it so far.
SOC treatment ? PI drugs? Sorry still learning the jargon.
It is a charity, or what used to be called .. but yes it is a teaching hospital.
Alcohol was never a problem, Beer only, less than a case a year. Easy to stop.
Transplants are expensive. The hospital isn't going to pay for it. With a waiting list for livers it's hard to imagine an old (58) broke guy like me making it to the top of a list.
Those last two thoughts are very true. As I sort myself out I can only hope to find the words to help or comfort others as the good people have me and as I have seen them, on many other threads, help others.
Why low platelets- When liver disease is present, the spleen can become enlarged (splenomegaly) and trap many more platelets than normal. Because a greater number of platelets remain in the enlarged organ, fewer platelets are circulating in the bloodstream.
You say your spitting blood? Is this because your gums are bleeding because of low platelets and high INR? Since you have cirrhosis, stage 4 liver disease (which causes portal hypertension) your should be taking a beta blocker such as Nordolol/Corgard which helps to prevent varices from bleeding by lowering your heart rate and blood pressure. Also be aware that you should not perform strenuous exercises such as weight lighting as it can increase your blood pressure to a point where your varices will rupture. Light weights for toning should be fine but I would check with a doctor first.
I assume you are being monitored for HCC (liver cancer) ever 6 months. Liver scan. This is something that all of us with cirrhosis need to have done as we are more likely to develop liver cancer as time progresses as we live with cirrhosis.
Your cirrhosis is compensated. I have ascites, edema, fatigue. You are in about the same condition as myself although I've only had one episode of ascites which happened after I had surgery for something unrelated to my liver recently.
Maybe someone on this forum who has had a transplant can provide more details that can help you find a facility in your area? Transplants are based primarily on the degree of your illness. I am 57 myself and am connected up with a hospital that does liver transplants should I need to go that route. You should to talk to someone who will get you into the transplant program either at the hospital you are going to or another.
Here is a link to learn more about getting on a transplant list at UNOS.
Here is a link to a patient's guide for managing cirrhosis and its impact.
Thomas D Schiano, is part of the expert forum. Liver transplants are one of his specialties. Maybe you could post a question there or search and find some answers in his posts. Here is the link:
Very sorry for waiting to answer. Had a blood draw on the 28th of Dec and had hoped to get a platelet count to report. But .. haven't been able to get anyone to respond, after 3 calls now. This isn't the determining test though. Originally I was told that would be just after the first of the year. Now it's the 20th of Jan. Guess the doc's are on vacation. In any case I've been feeling alright, been walking, if not running, as per newleaf09's suggestion, most every chance possible. Just a couple miles at a time but, you know, it does make me feel better. If fact some days I feel pretty good. The walking seemed to gradually clear up spitting blood thing, then two days later I woke up with bloody drool on the pillow. Sigh. That day I felt really good, euphoric almost.
HectorSF : my blood pressure is insanely normal, always has been, well I presume so, if drugstore pressure cuffs are any indication and of course since I've been going to the hospital starting in 08.
They did a EDG? A stethoscope down the esophagus and into the stomach. They found nothing as far as varices go. I guess that does just leave the gums. I was using the lack of bleeding as a rough gage of platelet count. So after a couple days clear, it was disappointing waking to blood on a pillow.
I'll check into the links you and YuK give about liver transplants. Right now I'm just worried I'll be able to continue treatment to week 12, and then, of course beyond it.
Thank you all. Hope your Christmas was the best possible and the New Year brings everyone what they need.
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