tests fear & platelets :/

I'm really trying my hardest not to get totally freaked out by test results...I fear I'm loosing the battle :/

In short, I'm currently on my 8th week of hep c treatment (AbbVie regime), I'm on treatment for 24 weeks as I'm being treated for cirrhosis based on 2 fibro scans post treatment which were 11.6kpa in 2014 & 11.4kpa feb this year. I had another fibroscan last week which read as a (WRONGLY) whopping 16.6kpa (a big hike from a few months ago) however I wasn't confident that the operator knew exactly what they were doing and my nurse was unsure too so she very kindly gave me another fibroscan today which read at a less scary 10.4kpa...however I just had my bloods back & it shows that my platelets have fallen again and are now down to 102 :(

I had an ultrasound last month which showed my liver was normal size, smooth with some mild coarse bits, spleen normal size etc...my alt is currently 13 and the virus has been undetected (PCR 0) more or less since the start of treatment

I feel like as soon as my mind it put to rest with a better fibro score I'm now panicing over my platelets...any advice/tips are more then welcome

15 Replies

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  • You will need to accept that olatelet count. Its still in a decent range for your safety. Mine has dropped to 18 before. It hangs now around 70 or so. Hep c causes the low platelets, treatment makes them drop. On these treatment drugs, you take a leap of faith. Its no time to keep a rigid focus on labs because the treatment drugs not just the virus now affects your readings. I have been treated twice. Treatments are extremely hard about mid way thru. Hang in there.

  • Thanks catfish...I am nearly at the halfway mark too...I was hoping to finish at 12 weeks but going to stick it for the full 24 in the hope that this virus stays gone. I was just totally freaked out after last weeks wrong fibroscan score that signified a dramatic increase in a just a few weeks (thankfully todays scan showed a slight decrease!!) ..I think I'm getting overly jumpy :/

    Hope you've had some nice bike rides today :)

  • Hi, just had a great cycle. My cancer was rasiating pain badly thru my back and I think I have some ascites right now. But I am still on the planet and I can do a few things today. I had to give myself Interferon shots for a year. That was crazy and it did not kill my virus, it was killed or put in remission over two years ago on a trial drug, Olysio, they do not use it now. I think it was too much for me and gave me cancer, thats just sometthing that happens to some of us when we are treated a second time but then again, I have had liver disease long enough for it to become cancer. Anyway, I am ok and you will be too. Count on it but yes these drugs and all the stress on us from this disease can certainly make us freak out. Its a challenge to apply reason when things sure sound freaky. Yay I get to see my doc this week, maybe he will let me back on diuretics even if it is risky, they cause me to lose brain sodium. I have had to manage ascites 5 years now all on my own. At 64 I sure do not like looking 4 months pregnant in my swim suit! I put it on anyway and shut up and go on and enjoy my life. We sure learn a ot about humility and gratitude with this disease.

  • sorry to read you've been in pain catfish, I really admire your defiance (if that's the right word) to this disease! I refused Interferon, I was a bit treatment phobic if I'm honest so this is my first shot at it and it can be a bit bewildering sometimes. I'm full of appreciation for people like yourself you are brave enough to do the trails and help find a cure for this horrible virus, I'm just so sorry that it's had such a harsh effect on you

    Thanks for the positive words and encouragement ...4 months left of pill popping and fingers crossed that'll be the end of hepc...then's the time to focus on test results I suppose. Thanks again

  • Hi

    I have found platelet counts can vary. Mine have ranged from 67 to 87 all very low. Doctor never mentions them assume more pressing results l think. Just keep talking to the specialist

    Hang on in their. Best wishes

  • thanks architect :)

  • When I was on Tx 24 weeks Sovaldi/riba last year my blood counts were terrible I am stage 4 cirrhossis,huge spleen and stage 2 varices I HAD geno 3a but have been clear since the 4 week of tx I am SVR now (i finished on dec 30th) .My paltelets have not been more than 70 in the last 10 years they are currently 45 .My body seems to run pretty well at this level ,tho obviously i bruise easily .but my Liver test are all normal since I cleared the virus .but white counts and red counts are creeping slowly back up ,and even 6 month after EOT my liver is a fraction less enlarged

    try not to fret too much.After tx you should start to see a slow steady improvement ,my platelets were all over the place on Tx so try not to worry ,.the bilirubin will go up too

    Does the abbvie have ribavarin in it ?if so dont worry too much about your counts while on it as long as you don't get too anaemic(sp) so glad you cleared all the best

    Jan

  • Thanks Jan, yes I am on 800mg of riba a day on top of the AbbVie treatment, congratulations on your SVR...may you continue to get better & better x

  • I ended up with cancer as well after 2x treatments with Interferon and Riba (NED now) but these new ones seem to be working for loads of us old timers too keep going to 24 weeks it seems to work best ..if you can hang in there

  • I am currently on Harvoni and had low platelets before treatment. .mine at the moment are up and down..I was told after treatment they should steadily rise back to normal levels. .don't think it's something to worry about after SVR

  • Thanks ballie & good luck with your treatment, my team have said they'd refer me after treatment if my platelets stay low and at the moment they're treating it as a sign of cirrhosis, which I don't really like :/

  • Hi Tess hopefully when you clear the virus your cirrhosis will also improve..they do now know that there is a chance of cirrhosis being reversed after taking away the cause..I think after treatment you will see some progress in liver function and maybe your platelets will start to increase.

  • Hi , sorry to here about your frightening results seems your getting there though , I hope u don't mind me asking you but did u say your on the medication as we'll for your cirrhosis , or have I read that wrong ?

  • hi K1978, no you didn't read it wrong, I worded it wrong!!!! ooops lol..what I should of said is I'm getting treated 'AS cirrhotic' due to fibroscans being over 11kpa & low platelets hence why they've put me on treatment for 24 weeks instead of 12, they can't actually confirm if I have cirrhosis or not yet, I guess I'm just on the border line & the truth will be seen in the 12 week after treatment tests

  • My platelets run between 18 and 70. You sound still safe to me.

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