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, and are there ant treatments available that I can do
20 is very low and I'm not surprised that the doc is thinking of reducing/stopping. Have you had regular cbc's that show a trend to that extent? Typically, platelets will show a downward trend from week to week, but not a big precipitous drop. Might suggest a re-do of a cbc to validate the 20 before you consider stopping treatment. You are close to the end and it'd be a shame to end now. By the way, there is a platelet drug (Neumega) but it's not usually used for hcv patients. Someone here has used it, but with some rugged side effects - if I remember ok. I expect that you have some considerable level of fibrosis, if not cirrhosis for those platlets to be low at the start.
Wow those numbers are really low. I would do what the doctor says. I started treatment at platelet 74. Mine dropped to 50. There is not much people can do, the only thing is a bloodplatelet tranfusion. 20 is as low as they can let it go with out lowering the dose. If I were you I would try to get some vitamin K in pill form. Maybe from Atkins cause it is not easily found in pill form. Your doctor can perscribe it in shot form. But try the pill form until you talk more with your doctor. I am so sorry to hear this. I start treatment again soon and that is a corncern for me too. Take care God bless
I just recently was put on Neumega. If this cbc was a "preliminary" and not verified by microscope, I would demand that it be verified before doing anything. If it is accurate, wow, that is very low.
In my case, the preliminary said 41 on a Tuesday. After two Neumega injections (next Sat and Mon), they verified it at 84, not 41. No need for the Neumega at 84.
After the two Neumega, I crashed with my hgb going from 9.0, where is was hanging for awhile with 80 Procrit a week, to 7.6 and 7.4 nine and ten days after the preliminary cbc. Preliminary platelets were 55 and 53 respectively.
They demanded I come in for blood immediately but I just can't bring myself to take blood. I'm now on 120 Procrit per week and they are doing all kinds of tests to check why I crashed. I think it was the Neumega but doc doesn't. I had a 102 fever for at least a week after the first injection. Doc ordered an "indirect Coombs" test to see if my body is starting to reject my own RBC's because of some new autoimmune disease. Should hear today. Stool samples to see if I am bleeding out. And a couple more tests. No reduction in meds yet.
I tell you this, not to scare you, but to give one person's experience with Neumega. The NP's say it either works real well or not so well. 20 is dangerously low. I wish I had more to help you and truly wish you the best. Will just say not to mess around with platelets that low.
Your platelets are very low, yet mine have been as low as 23 and usually hang around 35, started tx at 67. My Dr. gets concerned when they go to 25, but he has said that some can handle lower platelets better than others. Ask your Dr. what symtoms you should be aware of with the platelets that low. I was able to ride out the 23 and the next week up to 30 without lowering dose.
I asked Dr way back about Neumega and he told me that it wasn't approved for Hep C patients and he would not make me a quinney pig. But apperently missmiss was rx the drug so who knows? Good luck!
Has your Dr rx Neumega for many of his Hep C patients? Were you haveing adverse affects from the low plateletts for Dr to rx. Reason I ask is I am on week 43 and have not had my platelets reach 40 since the start of tx.
i really.truly want to see&hear T. waits& i would enjoy meetin you,but i will be finishing my trx in Oct..last peg shot is on the 19th...i don't feel as if planning excursions is quite in order yet...Can yu sneak in alittle video camera for your ailing mate&bonafide bigtime fan???tom would understand,heck i do...course i'm addlepated of late..
---please excuse the thread jumping...your concerns are v serious..nothing i can really ad to allay or guide..i'm on neupogen shot for WBC decline,but hopefully just a shot every 3 weeks-GOODLUCK and i'm sure you will get some more informed responses..
Sorry but I didn't read your entire post before I opened my mouth.
You bring up a good point about sx's. With low RBC's you can check clotting factor before making a drastic decision like reducing meds. I'm not sure what to look for with platelets. I know your heart is overworked and you should be aware of spleen pain but not much else. What do you suggest looking for with low platelets?
NP just called on this morning's blood work and HGB is now 7.7, up from 7.4, platelets are at 66 and WBC is now 1.7 from 1.1. Not worried about WBC, another week of Neup with take care of that.
Doc also did a retic count=.73, normal range .10-1.80%. The retic absolute was low at 15.2, normal being 17.0-75.0 x 10*9/L. Also an indirect Coombs which came back negative.
I wish I had read your post before she called and I would have suggested the folic acid and B12 test. Maybe I should just go get some and start taking it. I'm so leary of just buying any vitamins. If you have a brand suggestion and even an amount to take, that would be great. I have a mother's cupboard store near me and grocery stores.
It's funny cause it was an MRI showing abnormal bone marrow that led me to find HCV. The retic test is testing the bone marrow's ability to produce, I think anyway. I have struggled with low HGB through out tx. Maybe there is something else happening we haven't found yet. And maybe it really was the Neumega that did this.
Either way, it will make it hard to extend if recommended by the second opinion doc tomorrow. Otherwise, three more weeks and I CAN DO IT!! Thank you again.
Do we get to put PoHCV after our names when we're finished? lol
(Physician of HCV)
man! you are really struggling with those counts dropping in spite of the rescue drugs. 120mg of Procrit! maybe they should do a test for folate, and b12 assimilation? it might be a combination of things. See if they can test you for deficiencies, I would start sublingual folic acid and b12 asap, it can't hurt to do so while you wait.
I hope things look UP soon!
I have a very concervative GI and an aggressive Hemo doc. The GI would have stopped or drastically reduced meds if my platelets dropped below 50 and doesn't like to refer folks to a hemo unless absolutely necessary and patient pushes for it. We talked and he wouldn't budge from the 50 figure. Early in tx he reduced Riba for a month while I waited to see the hemo, after sending me to ER for Neulasta. The ER trip made him to decide to refer me to the hemo, even tho I had been asking cause I didn't want to reduce meds that early in tx.
So, I really had no choice if I wanted to continue, except to lie and say I did Neumega when it was still in the fridge. The Hemo doc was working with my insurance for Neum approval once platelets dropped below 50. The kicker is they weren't really below the 50 mark after verifying the numbers by microscope. I'm not sure how many HCV patients my hemo actually treats but he is very thorough and aggressive. Cancer pt's can get as low as 20 before real concerned.
From reading this forum I don't think real low platelets are the norm. Some who start out low or some who might have something like Thallimine(sp) or are cirrotic may end up with low platelets. You're close to the end and if it hsn't been mentioned before, you must be hanging at safe levels and I'll bet you should be okay.
This sure is a learning process, isn't it! Be your own best advocate, I say. Best to you.
I never heard of b12 toxicity, so I would not hesitate to take it at any time. folic acid is restricted by the FDA to 400mcg anyway, so I would start with that. any standardized brand would do. Puritan's pride is my favorite nowadays.
Califia was taking b12, maybe she can suggest more.
go ahead and buy some anyway.
I am interesting to buy NEUMEGA for a relative who lives in Romania. Could somebody tell me how can I find the medicine, and how can I buy it in the USA and send it to them. I really appreciate your effort to answer me. Thank you very much. Please answer me as soon as possible.
I am 26 year old pakistani, hcv positive patient and also the non responder of first 3 month shot + rebvr. now my platlet going to decreae day by day. 6 month before it was 200 after three month drop to 135 now it is 80. now days i regularly getting bleeding from my teeth please any body can help me to under stand my problem
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