Low Platelets & Hep C

Does any one know what happens next...
Husband's platelet count down to 15 -  he's been on Inteferon & Ribaviron treatment for 6 weeks, put on hold for 2 weeks waiting for blood results to pick up...

Had Interferon + Ribaviron trial for 6 mths - cleared virus for 3 months but it came back - this was over 6 years ago

He's had the virus a long time (ex blood transfusion post surgery @ 19 year - he's now 56)

any one been down this road... wondering what lays before us???

Ozzie62

[meki]

Have they given him anything to bring them up?

There are some good rescue drugs - but I don't know what his levels are as far as how much damage, etc.

I also don't know what's causing the lowering ---- did he have a baseline prior to starting TX?

[Ozzie62]

No - not yet.  
We are trying Vit K via diet & suppliments with Calcium plus Vit D & Vit K - that seems to be the only way to get it other than Brocoli, spinach etc....

Specisalist said it wouldn't hep but wouldn't hurt either... feel we have to give it a try.

Platelet Count was 40 b4 treatment commenced droped to 27 and now 15

[meki]

40 is low to start off --- Ask about meds that can help raise the levels.

You are seeing someone who has a lot of experience in treating?


Neumega might be the right answer....

I'm sorry - it's late and I'm brain dead --- but you need to ask your doctor, if your significant wants to continue tx --- he might need the rescue drugs --- and they CAN help.

A lot of folks on this board have had to have them --- so maybe someone can help you out on that ok? There are a couple of them out there --- so you might get some answers to which ones helped people the best.

Much luck.

Meki

[Ozzie62]

not sure if Neumega is available in Australia..
We read about new trial medication for low platelets & Hep C but its not available in Australia yet... thanks for your advice.. we will ask about it.

Doctor seems to have experience... so hard to know for sure??

Thought it would help to speak to others that have been down this road...

[meki]

http://www.helium.com/items/730801-human-marrow-produces-megakaryocytes

[meki]

Procrit and Neupogen...

But basically Only thing might be available is a gamma globulin transfusion ---- a few folks here have had that as well.

I don't know that there would be a difference from country to country - but there might be another name for these things in different countries.

Good luck  - OK?

Meki

[meki]

Look up: oprelvekin

Maybe y'all have another name for it over there?

[meki]

oh and here's another link for you

http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1413-86702007000700021&lng=en&nrm=iso&tlng=en

[Ozzie62]

thanks so much for your advice - appreciate any info we can get...
will check out the sites now.

[sfwandwow]

neupogen can raise it..

[sldb]

Check to  be sure that is the correct platlet count.  I have never seen one that low where they did not hospitalize the pt.and give FFP...

[Ozzie62]

Sorry new to this I don't understand the term FFP???

I know that the normal range for platelets is 150-400 - it is scary to be at only 10% of the low range...

[Ozzie62]

Thanks so much for your advice, I've looked this up - does sound like it wil help -
apt with GP tomorow for latest blood results will ask about it then if result still low.
We've emailed query to Hep Specialist also...

[gauf]

when you say "put on hold for 2 weeks", do you mean tox was stopped? That would not be a good idea at all. A count of 15 is not a good reason to halt tox.

[Ozzie62]

he was told to stop the interferon & ribaviron for 2 weeks at this stage... just got the last results from mondays blood tests platelets now 14... at least its not dropping quiet so fast... seeing gp in a couple hours

[gauf]

That sounds like a real blunder by his doc but I do not like to second guess a professional. Perhaps there is something else going on? Was he an RVR?

[gauf]

Low platelets are common on tox. and most docs don't prescribe rescue drugs until counts reach 10 or so. 15 is low but still in the normal range (barely) and halting treatment can be disastrous to the odds of reaching SVR. I must be missing something though, because it makes no sense that the doc would halt treatment.

[gauf]

Are his platelets literally at 15?!  I assumed that 15 meant 150!  If it is at 15 literally, then I am a moron and you can disregard my previous posts!

[mikesimon]

Neupogen will not help - it increases white blood cells and to my knowledge has no effect on platelet production.
Neumega is a drug that increases platelet production and it is something to consider if you can get it in Australia. It may be of benefit.
A platelet count of 15,000 is very low and some action should be taken. Discontinuation of interferon seems like the right response. Interferon often produces a decreased platelet count (thrombocytopenia) and cirrhosis is also associated with thrombocytopenia. If his platelet count before starting treatment was 40,000 it suggests that he may have some degree of cirrhosis.
Good luck, Mike

[Ozzie62]

Platelets now 14 (or 14,000) waiting for GP to talk to Hep Specialist to see what course we can take, frustrating to not have answers but hopefully they can offer some hope...

Hubby feeling very ripped off... he's had such a healthy lifestlye... no drinking, smoking and a good low fat diet all his life.. just the luck of the draw (rusian roulette) when you needed to have blood transfusions for medical reasons they didn't know about blood born virus  like HCV back in the early 70's... I had a transfusion in the early 60's so there but for the grace of god....

We just have to trust the Dr's and hope that they can give us something to hope for...  hubby's keen to try to go one with the treatment so that he can finally clear the virus.

I don't know what you mean by the terms RVR or SVR ... is there a thread that explains all the terms on this site?
Thanks for your encouragement and comments.
KB

[Ozzie62]

Hi thanks for your feedback re the drugs that have been mentioned, I had read up on them and discovered that Neumega is what we might need to pursue, our GP mentioned a drug that could help has had some success with it before with another ITP patient so we are waiting for him to consult with the Hep Specialist first... can't remember what he called the drug .. probably have different names for them here in Australia.


His ferritin levels are through the roof also but the ALT & Bil levels have dropped back a lot so that was a good sign... just hope that if we can get platelets under control so he will be able to tolerate the treatment so that he can hopefully clear the virus for good.

We dont know the geno type or viral load... was sure there were test done for this but specialist hasn't advised these and cant find them on the results that we have copies of.

Thanks for your good wishes.
KB

[FlGuy]

Take a look at this. In particular the trial sites in Australia


http://www.cl****

[sldb]

Pls. stay on  his doc about that low platlet count, this does concern me.  I believe it is the riba that causes a low platlet count.  I dont know what your husband count was at the start of tx, but maybe you should put in a call to his hep. tomorrow. Let me know how it goes.....Wishing both of you all the best....Leah

[FlGuy]

What I attempted to post was a result from clinicaltrials.gov  .  It displayed a result for a trial drug called   eltrombopag.  The intent is to determine the results of this med, intended to treat thrombocytopenia, in the presence of hcv and antiviral (soc) treatment.  There are several sites in Australia that seem to be recruiting now.  Maybe a little research.

[Ozzie62]

Hi I've heard about the trials for eltrombopag and checked it out about 6 weeks ago the trials had not commenced in Australia at that stage... will look into it again. Thanks

Prednisolone x 60 mg for 10 days is the latest development to try to get the platelet count up.
see how we go...

[sldb]

What do your husbands clotting factors look like;  PT. PTT. INR?

[mikesimon]

Ribavirin destroys red blood cells which can and often does result in hemolytic anemia. Ribavirin is not primarily responsible for a low platelet count. Ribavirin causes the premature breakdown of red blood cells which results in the anemia which so often afflicts us during treatment.

Interferon can cause myelosuppression (bone marrow suppression) which results in a reduced number of platelets, red blood cells and white blood cells circulating in the blood.

Interferon is the primary cause of decreased platelet count that often occurs during treatment.

Mike

[sldb]

Thanks. i wasnt sure thought my hep told me the reason my platlet count dropped was from the Riba.

[mikesimon]

I wouldn't be surprised if he/she did tell you that. I think if you research it you will come to a different conclusion. Interferon induced myelosuppression can result in a decrease of red blood cell production which might add to the hemolytic anemia. But the ribavirin is really the culprit when it comes to decreased red blood cells in circulation. A reticulocyte count will generally bear this out. It's a blood test that measures how fast red blood cells called reticulocytes are made by the bone marrow and released into the blood. I tested my reticulocyte count when I was suffering from hemolytic anemia and that count was within the normal range. Reticulocytes - immature red blood cells - develop into mature red blood cells in a few days and then they run the risk of premature destruction due to the ribavirin.
Platelets are impacted by the interferon - the bone marrow suppression results in a lower production of platelets. Cirrhosis also suppresses the bone marrow and thus we often see a decreased platelet count with these patients too. And once interferon is introduced the platelet count is further impacted as a result of increased bone marrow suppression. That makes treatment more difficult and until drugs like Neumega become more acceptable in the treatment protocol the only response to dangerously low platelet counts is interferon discontinuation or dose reduction. Mike

[HectorSF]

First, I want to wish you both the best and I hope your husband has been able to continue his treatment.

You say your husband started with a platelet count of 40 (40,000). Did your husband have a biopsy done before starting treatment? If your husband has cirrhosis this would explain why his platelets started at such a low level and why it has continued to dropped during treatment.

Cirrhosis / Platelet correlation:
* Cirrhosis (scar tissue in the liver) causes portal hypertension (high pressure in the portal vein)....
* Portal hypertension cause the Spleen to enlarge....
* An enlarged spleen traps platelets. (Platelet count begins to drop) A low platelet count causes blood to not clot properly. (Blood takes longer to clot.)
* Treatment commonly lowers platelets even more.

(I was infected 38 years ago myself and have cirrhosis along with portal hypertension/enlarged spleen. Before I started treatment I had a platelet count of 55,000. Since starting treatment my platelets have dropped but have stabilized around 30,000-35,000. Which hasn't been a problem for me luckily.)

Please get the information you both need in order to best manage your husband’s illness. Find a doctor who will work with you as a partner on this. Viral load, genotype, and biopsy results (current status of your husband's liver) are critical in evaluating your husband’s chances of clearing the virus (SVR) with current antiviral therapy. Depending on the status of your husband's above data can mean the difference between having an 80% chance of clearing the virus or a 10% chance!

I see that your husband has been unsuccessful with treatment in the past. By educating yourselves you will know as much as you can about the probabilty of successfully clearing the virus. It will help you both (along with your doctor) to assess the potential cost/benefit of the various treatment paths that may be available. And it will allow you to set your expectations accordingly.

All the best to you both.
Cheers!
Hector

[merryBe]

with those numbers you should have been to bth a hemotologist AND an   oncologist by now.

if you were not put on rescue drugs...get new doctors now.!!

[Ozzie62]

Results from yesterday's bloods show that Platelet Count up to 19.... thanks goodness... its going up!
Hopefully will improve some more after the full 10 days on prednisolone.

Thanks everyone for your comments and good wishes...
we need to find out more about these results...
it appears that US Doctors are more forthcoming in explaining the results than those in Australia...  just have to start asking a lot more questions...
**sldb**
Not sure where to find the clotting factors you mentioned.. PT PTT INR on the results we have (I'm sure we sound really ignorant) I don't have the forms here with me today... will check them again and post some details... as you may be able to help us understand them better.  We asked at the Path Centre yesterday but the Scientist was at lucnh and the lab assistant didn't know how to help us with our questions.

Liver Biopsy was done over 6 years ago, probably needs another one, last one only showed slight inflamation (inflammation) no cirrosis (cirrhosis) that they mentioned.

Hoping for bigger improvement in the platelet count at next Tuesday's blood tests.
GP is away for a week which has been frustrating, trying to get results over the phone!
We might email Hep Specialist with some more questions this week...
They (GP & Hep Specialist) were talking about doing something with bone marrow if the platelets dont recover but haven't explained much more about this yet... seems they are waiting before they tell us too much about the next step with all of this.

I think we need to be a little more assertive with the Dr's so that they include us more in the process, husband want some idea of prognosis etc and to know that there is hope that he will be able to continue with treatment so that he can finaly clear this virus and feel like a normal person again.

Thanks again to everyone - we realy appreciate your comments .. the information and discussion has been very helpful.

[tokyo7788]

I am the administrator of the forum which provides discussion to patients with liver diseases (hepatitis c, fatty liver, liver cancer, liver cirrhosis, and NASH liver). You can get much useful information about liver health and let others share your experiences there. Welcome to visit http://www.****.com/
Our email is ****.  
Pls feel free to contact with us. Hope it is helpful for your health.

[Ozzie62]

Hi everyone
Well we havn't had the joy we had hoped fro with the prednisolone platelet count now 18 so have stopped ... looks like we now go to the city to see a Haemototogist to get bone marrow tested re platelet production... any one been there done that???
Waiting till monday as Hep Specialist is away till then.
thought i'd post lab results for some feedback;
Liver Function Tests;
Total Protein 61 (62-88)
Albumin 36 (31-50)
Globulins 25 (25-44)
Bilirubin 23 (<20)
Alk Phos 154 (35-135)
ALT 64 (<40)
Gamma GT 166 (<60)
Haematotogy:
Red Cells
Hb 119 (135-180)
RCC 3.73 (4.5-5.50)
Hct 0.36 (0.40-0.54)
MCV 95 (80-100)
MCH 31.9 (27.0-32.0)
MCHC 335 (320-360)
RDW 17.3 (9.0-15.0)
PLATELETS
Count 18 (150-400)
WHITE CELLS
Count 2.70 (4.0-11.00)
Differential Count
Neutrophils 1.53 (2.00-7.50)
Lymphocytes 0.90 (1.20-4.00)
Monocytes 0.27 (0.20-1.00)
IRON STUDIES
Iron 18 (9-30)
Transferrin 23 (23-43)
Transferrin Saturation 39% (14-53)
Ferritin 2450 (30-620)

They think the high ferritin is an acute phase response.... any one had this diagnosis

Apprectiate comments and feedback.
Cheers for now
Ozzie62

[CyberVariant]

I have hep c and similar problems although I was on the treatment in 03 and was pretty much a non-responder in terms of viral load but I'm a variant of genotype 1a and in general I'm genetically a weird patient.

I'm not a doctor but have been dealing with this disease since I was a child and my first hepatologist told me to do my research.So I've learned some stuff along the way how to read my own labs and fix myself when my docs can't figure out how.Frig no one even knew what to do with hep when I was diagnosed.

UCdavis (California) has some information up on success rates with treatments and different methods doctors use in dealing with hep c on youtube.
Their clinical head in terms of dealing with hep c and liver stuff there seems pretty versed.Guy pretty much wrote the book on it.

Your husbands blood counts look like he's having a bit of bone marrow suppression this go round with the ribavarin.Which is prolly why they decided to take a break to see if his levels would go up.Is he on teleprevir or boceprevir as well? If he is they could maintain those levels in his system while reducing or withdrawing the interferon/riba which should help with sustained viral response.

Any information I give you look up and make up your  own mind but it might help so I'm sharing whats helped me.

Make sure he gets a good b-multivitamin and not one of the high dose ie 20,000% b12 or some other such. B-vits to help with his blood production and other system functions from brain and nervous system to metabolism.

I can personally recommend new chapter organics b food complex.However, the store brand one daily b essential usually green label at most grocers is ok.New chapters stuff just seems to be pretty darned good imho.Nutrition is an important factor when the liver is involved.

Vitamin B1, is critical for brain function and is in part responsible for brain fog or the days hep patients have where they seem kinda off.Kinda like when normal people get sleep deprived or take too much cough medicine.
Vitamin B5, has a few reports up where its been used to help with liver function and treatment of alcoholic hepatitis in other countries.

Vitamin K go for food sources over supplements it can actually be bad in overkill. I will say that its a good idea for him to have a good vitamin k intake. I.e. K-dependent clotting factors factors I-XII or 1-13 which the doctors should be checking as well if his counts are low.
If his b12 intake is high it might affect his ferritin levels but I stay away from iron as a general rule outside of food sources familial problem processing it on top of already having liver issues. Iron overload can cause liver failure.

Iron deficiency anemia isn't as likely in a hep c patient as a vitamin k issue.

So your doctors kinda threw me for a loop with that one because its old medicine.Plus since hes been on the treatment its actually fairly normal for blood counts to drop. Ribavarin basically blows up blood cells for one thing.
Not generally that bad though.

However, his enzymes would be going kukoo if iron overload was the issue and for a hep patient they don't look too bad although like a lot of medical tests they're only indicators not concrete measures especially with liver stuff.

I found some information about chlorella boosting platelets and wbc and I've been taking it for the last month and have had less bleeding issues so that seems to help a bit.

If he craves anything and I mean really craves anything its worth making a note of trust your instincts and his.

Remember doctors are people too and even though this disease has been known about for awhile they're still learning still evolving.So yes they may miss things specialists have to keep up to date more than GP's,RN's and basic medical staff.

Have faith in them but if it feels like something is off to you or being missed get a second medical opinion.
Sometimes another pair of eyes on an issue is helpful.

I think but I'll have to do more research on it the platelet drugs aren't as much of a course for liver patients because they have liver related side effects.Plainly put everything we take into our body just about goes through our liver or is processed by something it produces in some way.

UC Davis is worth investigating in the long run because they have a high amount of incoming livers as well as a live donor program.
So if he ever does need a transplant that would be one avenue to look down.

Mayo clinic generally has patient friendly information on  a huge range of medical conditions and tells you what to expect with tests as well as basic information about how the body works.

Nutritiondata which is a .com has a ton of just that another good site is whfoods also a .com. I put it that way because I'm not sure if direct urls are allowed I kinda stumbled in here while looking for answers to a related question. :)

Vitacost has lower than store prices and fair shipping rates if money is an issue for vitamins and its the exact same stuff you get at the store.

If you want to the youtube channel for uc davis paste this into the search line and it will take you to their first video.
Hepatitis C: From A to Z
The channel is UCtelevision

I'm sorry if I seem all over the place or there are any typos. I'm exhausted as all get out right now.

I hope your husbands levels go up properly and stay that way.
I wish you the both the best.

[Bill1954]

FYI, UC Davis closed their liver transplant program in 2008.

Bill

[mikesimon]

There might be a few other questionable remarks as well.

Oh and by the way, the thread is from 2008!

[Archer_]

My platelets are low 60-68 pre -treatment and I have also been scheduled for haemotological review and proabable bone marrow biopsy before tx. At 15 you should be receiving close monitoring - once you start sliding down from 20 bleeding risks can become critical, specially if cranial or osophogeal. Trials are new in Oz for Eltrombopag but overseas trials I am informed have raised some concerns about bounce back on the drug ie relative challenge with managing the immediate rate of restored platelet increase and consequential, potential thrombotic risks - this appears however to be more so with efforts to restore counts to "normal" levels. Where count recovery is targetted to levels just inside margins which are considered safe to allow for tx resumption - the thrombotic risks are apparently significantly lowered.    

[child24angel]

Correction,

UCDavis is not a place to go if you need a liver transplant. Go to another
region...that make you wait in ER..for hours, literally......10 hours while
bleeding.  If not in the waiting room, then in the hallway of the ER room.

THEY DO NOT GET IN A LOT OF LIVERS  !!!!!! they don't even have
the TP program anymore, as they didn't do enough of them.

They do a lot of Kidney TP's...not Liver, for crying out loud not live donors.

I've met  top surgeons, Hepatologist and Hematologist there......and , they are
excellent.  That does not mean  you will get a liver.  Not at all.

If you're here to give points to UC Davis , save it.  The system they run is horrible.

This post you posted here doesn't seem right , if you are indeed in the system of UCD you
would know this and not go by something on u-tube.

Yes, I would say good luck to anyone going to UCD.....you will need it.