Hi, How low was your platelets?
Is this a Primary Care Doctor that is giving you this advice? Many times they just aren
Ooops, getting my bloods mixed up. The concern with platelets isn
my platelets are hovering around the 130's and no one is remotely concerned, except of course me!! I agree with billy 54, you need a more knowledgeable DR, and let us know what your bloodword is:
NEWBIES: very important advice; you may very well have to jump Drs, they come and they go, especially in a small town like I live in. You pay for your bloodwork results, they belong to you. walk right into the lab the next day and ask for a copy-every single time. Even if your not tx, you maintain your records, take a copy to the new Dr, and monitor yourself. You have one patient, they ALWAYS have too many! I recently went to a specialist consult, and I have a spread sheet with 11 years of the pertinent results, alt, ast, PCRs, etc. (nice graphs too) The Dr was more impressed with the spreadsheet than anything- it allowed him to quickly assimilate 11 years of bloodwork, as well as the tx results. Good luck,
As you probably know I am on half dose Pegasys and 200 mg. ribavirin (started June 6th) and my platelets have dropped from 185,000 as of May 25th to 115,000 as of July 3rd. I'm not worried about it because when I was treating at full doses my count was 25,000 but I am somewhat amazed that they would drop so much so quickly on such low doses. I just didn't expect to see this kind of decrease but, as we know, these drugs are not innocuous. Mike
So, can you tell that the dose is reduced physically? Or is it all or nothing? Hope it does what you need it to, with minimal sx,
I don't have anemia and at this dose of ribavirin I don't expect that I will. As far as the Pegasys goes it feels about the same as I remember it when I was taking 180 mcg.(isolating the effects of interferon from the ribavirin is difficult). My enzymes dropped for the second consecutive week so something seems to be working. I can't believe that I am saying this but I don't actually know why I am doing TX. My serum is and has been undetectable since 2003 and I stopped TX in 2004. I get Heptimax tests monthly so I know I have been serum undetectable all along. My biopsy June 2 showed 30 IU/ml HCV in the serum obtained with the tissue sample and it showed mild to moderate fibrosis. Maybe my surgeon wants to try and reverse the fibrosis or maybe he has some plan for the small amount of HCV in my liver. He said he wanted me to treat for 6 months. We talked for 45 minutes about everything except why he wants me on the TX. I was more interested in why there was the HCV in my liver etc. and also mistakenly thought that 90 mcg. Pegasys and 200 mg. ribavirin wouldn't affect me at all. I am going to explore this with him this week or next because I would really like to stop this stuff and see what happens once my enzymes normalize. Mike
Quick Hi Mike hadn't talked to you in a while. I reduced my Pegasys from 180 to 135 because platelets had fallen into the 40 and doctor was going to pull me from treatment. Didn't make me feel any better but my platelets have gone up to near 100 and holding. I guess I will tell the doctor about the dose reduction one of these days. Hang in there my friend. Dale
gosh...a spreadsheet? with all your test results? i am sooooo jealous. i've got some stuff from Quest stashed in with my underwear but i've been pretty slack about compiling my medical records. i'm gonna change. i mean it dammit. it's my life. i'm takin' control. thanks fishdoc.
Yup, and the older you get, the bigger the sheet..but we literally have such a turnaround in Drs in these small towns, that you can't count on them being there, here today and gone tomorrow, literally...excel is your friend, you can graph the results in a nice bar chart.... good visual aid to show progress and make you feel better about tx!!
Different doctors react quite differently to platelet count. I never heard a word about platelet count when I was treating and, as I said, mine were in the 20s for much of treatment. Sometimes I think that my transplant center has vastly different thresholds and protocols when it comes to TX than do most hepatologists. For instance, when I started treatment in 2000 with regular interferon 3x per week I never got any instructions at all. Just a box of meds with orders to subcutaneously inject myself. While on Peg-Intron when my hemoglobin got to 9, I got a box of 10 - 40,000 unit vials of Epogen in the mail. No video or demonstration for instruction - just an oral order to inject subcutaneously twice a week. When I looked up the price and saw it to be around $4,800 a box I was floored. I hope that you can get your Pegasys back to full dose if that's what you'd like to do. And I hope you get through this and reach your SVR goal. Good luck. Mike
Fishdoc: The Dr was more impressed with the spreadsheet than anything
Gee. I would have thought the hairy ears and neck would have made a bigger impression.....
Mike: I'll be interested in hearing more when you learn what results they hope for the 6 weeks. I get the sense that there's a lot to be learned here about persistence, etc. Thanks for sharing it with us.
I cringe everytime UPS runs and is carrying a perishable box. I'm lucky in that that insurance covers a great deal of it but I always think of those that have no coverage. I went through the 3x a week interferon a few years ago. Didn't work for me and pulled at the end of 4 months. This new treatment of Peg/Cop is showing positive results but my doctor is a stickler for following the drug manufacturers protocol and platelets below 70 mean. I had labs yesterday and if platelets hit 100 and I think they will I will add that 25% of Peg back to my Friday nights. This is my last walk down this trail of less than 50% chance of success drugs anyway. It will be what it will be at this point. I'd rather have some quality of life and the virus than another dose of this cr*p. 16 weeks left to go. Dale
Actually, it was the scars that had him rivited!! Knee surgery, nnooo, you've never had knee surgery?? NNNoooo, what are all these scars from.... Well Hell Doc, barb wire fences of course........yyuurr not from round harr are ya now??
It is hard for me to understand the vastly different protocols regarding platelet count and TX. I would have been thrilled with 70,000 back when I was treating. My surgeon never even mentioned my low platelet count unless I did and then he would just shrug it off. I think some docotrs are just scared or not experienced enough to deal with a patient who has a low platelet count. I never heard of 70,000 as a threshold - I have heard 50,000 and 30,000 but not 70,000. Is that number in the product literature? I know of some doctors who get worried at 50,000 but I can't recall anyone who wanted to modify TX at 70,000. I guess it's each to his own. I hope you can get up to dose and finish strong and clear this time Dale. I really wish you good fortune this time around - SVR for you. Mike
Hey Mike, Thanks for the well wishes and right back at you. I did not see this on a publication only verbally from him that 70 was a threshold. I made the assumption knowing what a stickler he is that him saying 70 was as low as he was comfortable with and gambling with it was medical protocol. Sorry for misleading. It was an assumption on my part but a question I will ask. Dale
I went today and got copies of my bloodwork. The blood drawn last week show my platelets at 132. Last year at this time they were 167, and the year before the test showed abnormal because of clumping. So far I have only seen my family MD, but I have an appointment Tuesday with a liver doctor. Does anyone know at what count platelets usually are for someone to be treated with the meds? My viral load, etc. results aren't back from the lab yet. Thanks for all your help.
I am type 3 and am at week 17 of a 24 week treatment, my platelets when i started was 156 it is now down to 20.
My treating doc (liver specialst)has told me not to do the injection this week.
Has anybody else had this told to them
try to post in a new thread or an upper existing one, hardly anyone comes down here.
Gee cuteus, this place is getting too popular and I just found it too. It figures. Mike
OK, I posted a picture of me and my grandbabies on the aussie site. I must say that is pretty cool, to be able to put a face to a name...we should have that here.........I have a good shot of ribarash.... think I should send that??
Just saw your post on bizarre growth! LOL Yes,,,I have to agree with all,,,eyebrows totally wiry and thick! lol Its hard to believe a drug can do that to a person but yes,,,,thinning on head so bad that when winter hit and stepping outside,,,,I could feel the cool breeze! Eyelashes were long thick and beautiful,,,,Hard to wear my reading glasses because they would swish back and forth across glass. Everything turned back to normal after tx was over,,,,,And yes,,,,the unmentionable,,,thinned alot and just about time after tx it started to get its "body back" as Vick says LOL I decided to take the plunge and go for the Brazilian touch!! What a delight! I feel like I am starting all over again in life haha So,,,,to your answer,,,,I can't honestly say because I decided to go for sleek and sassy!
Fish,,,,where is the Aussie Site?