Thats funny that you mentioned this today. I got a copy of my labs in the mail today. My platelets were 49. They have been in the 50's. My primary care Dr. ran the labs and faxed them to my liver Dr. She had written at the bottom of the page. "Borderline for continuing hvc treatment." I pretty sure that I had a conversation with the liver Dr. at the beginning of treatment they were 88 and he said that he would let them go to 30 before reducing meds. He said that I "needed" the treatment since my platelets were low.(bx was grade 3 stage 4) I'm on week 17/48. What week are you in? I think that we started close to the same time. Are you doing 48 weeks? I have had low platelets for 3years and have been in the 20's and haven't had alot of symptoms. Occationally a nose bleed and gums bleeding. The fatique is from hvc and treatment I think. Let me know how you are doing.
your right where im at 40,000 doc had me cut the pegasys dose i have bounced between 38,000 and 55,000 since week 7 now on week 17 . never had bleeding problems and no physical sx from the low platelets . our best bet for a rescue med eltrombopag is in phase 3 clinical trial (for cancer) or phase 1 for hep c.
there is 1 other opiton neumega it works but has many side effects and a almost 100% chance of anemia with in 3 days of starting lasting for 2 weeks after stoping . always wondered why they didnt cut riboviran dose when platelets droped also hope your platelets take a bounce up
There are many people who continued through tx with platelets in the 30's. My tx doc will ignore platelets till they hit 30. Hematologist, who monitors blood stuff, will not take action til 25. The comments made above about Neumega were repeated by the hematologist - he won't use it for hcv pts
I hovered between 50 and 70 throught most of my 10 months of tx. Doc did not seem as concerned about them as about the Hgb and ANC. Clotting also did not seem to be a real issue. But then again I took extra caution to avoid cutting myself and still do since I haven't cleared.
I did notice that sometimes it took longer (an hour or so more)for the bleeding to stop after I visited the vampire den for my bi-weekly CBC's.
Long story short, I ended up on Neumega just to continue tx due to a mistake. It was horrible.
My Hemo would get a preliminary lab report within an hour. It showed my platelets as 41. Had they had the platelet count manually verified before rxing the Neumega, they would have found platelets in the 50's or 60's, I can't quite remember.
First I would have the count verified.
I pray you don't have to take Neumega. The anemia is very real. I was dropping .2 a day after a big drop down into the 7's. It took huge amounts of Procrit and a long time (much more than two weeks) to get my hgb back up. But I was close to the end so I stuck it out, only about 6 weeks to go.
I'm nearly 5 mo post tx now.
A lot of GI's will discontinue but if you can get a good hemo, they are generally more willing to let you go lower. Are you getting weekly draws? You should be at this point.
I wish you luck.
I just did #5 of 24, yesterday. So Wednesday's blood work was the first since starting tx. Now they want me to get another CBC on Tuesday and I see the DR. next Thursday. I don't want to stop tx. I am genotype 2 and despite my poor liver, I think I have a good chance of beating this thing. I'm not having bleeding problems, except for the brain that melted right out my ears.
I had a similar experience, platelets were 99,000 at the start of treatment and at week 6 they dropped to 34,000. I was taking vitamin e, selenium and milk thistle against my doctors advise. I stopped taking supplements and my platelets rebounded to 70 to 80.000 ever since. Who knows whether is was the supplements or the body adjusting to treatment. You may want to see if your supplements are blood thinners or anti-coagulants.
This seems so obvious that I am reluctant to mention it but that never stopped me before - so here goes. I would always get my labs the day I injected Peg but before my injection. If you get labs drawn shortly after your injection the blood chemistry (say within the next day or 2 or 3 etc) this may distort the true picture. My transplant team insisted that I get labs just before my shot for this reason. On occasion, due to Holidays or the like, I wouldn't adhere to their instructions and my Hb, RBC, WBC and platelet count would look worse than was normally the case - particularly my platelet count. So get labs drawn before you inject if you're not already doing so. Since I would often get weekly labs the effect of the shot on my labs was obvious to me. Mike
Thanks Bill, I will see what I can find out about my supplements. And yes, mike, I had my lab work done the day prior to my shot due to how far I am from everything. Thanks for taking the time to write. Stating the obvious is a good thing for us of the brainfog!
Mine were pretty low at times on TX. Low 40's often. They would seem to cycle around, they would swing upwardly for a month, then start back down. I would not think discontinuation would be the end point. It seems a reduction in Peg as pointed out by someone earlier would be more apporpriate. More than a risk of cutting myself, I watched for accident situations since surgery would be a problem. I didn't climb ladders, was extra diligent about seatbelts, made sure the wife didn't catch me wearing her silky things, that kind of stuff.
My doc said 30 was his low threshold. Whenever I thought I was headed into that zone, things would turn themselves around. Good luck you guys.