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276730 tn?1327966546

Aplastic Anemia

My hep/gastro man that referred me to the Univ. of Miami called me last evening to see if I got into a trial. I advised him that I wasnt accepted beacuse I had hepB years ago..which he was aware of. He thought that issue was absurd but understood they wouldnt accept me. I told him I have the Pegasys in the fridge and ready for takoff on Friday. I also told him about my 75mil VL. He was not concerned about that. What he was concerned about was that 6 of  his HepC patients came down with Aplastic anemia in the past 12 months.That usually is fatal..but sometimes can be treated.
Now Im terrified to take the Pegasys. He still wants Dr. Jeffers to try to get me in a trial I told him I just went thru this and its not goig to happen. He feels a P.I. is the only way to go...and with all the sx of Pegasys he'd rather see me not go that route. Im betwitched bothered and bewildered. Im going to crawl under a rock now and Im not coming back out. Ive had enough.
27 Responses
276730 tn?1327966546
To all the new people-My intentions are not to scare anyone- I am new to tx too- Unfortunately I think the only one I scared is myself. Im sure this aplastic anemia is rare unfortunately he told me this just last nite and I am concerned. Its also unfortunate that 6 patients have this now.
96938 tn?1189803458
Are you sure he said APLASTIC Anemia, and not HEMOLYTIC Anemia?  By the way, I thought about the viral load of 75 million.  Viral Load is usually expressed as International Units per ML.  IU units are not the number of 'copies' to get the approximate number of copies you need to multiply the IU's by 2.5.  As an example a VL of 4 MillionsIU/ML would mean 10 Million copies.  Maybe the doc was giving you the number of copies (75 Million) which would equate to 30 Million IU.  Still a big number, but not seemingly offf the chart like 75 million.  Get a copy of that pcr report yet?  If not have them fax it to you.  I know those guys have a fax machine.
276730 tn?1327966546
APlastic anemia yes. 75mill yes. I have copies of it all. I was shaken a little by the Aplastic thats
quite severe...he said he has over 20 HCV patients and 6 have Aplastic Anemia.
Im not one to get scared easily this really rattled me terribly.

I was planning to start this Friday. I cant go into this frightened. I wasnt before now I am.
Avatar universal
I did a little bit of reading and it seems that Aplastic anemia requires blood products and it's more likely that Aplastic Anemia brought on the presence of HCV rather than the other way around, due to tainted blood products.  I really wanted to read up on it more before posting to you but that's my initial impression of it.  I wouldn't quote me on it ... just saying find out more before you crawl under that rock.

Trish
276730 tn?1327966546
My virlal load is international units...which would turn out to be a 1 log higher than 8 million. Thats what I was told by my gastro/hepdoc.

Thanks for replying Im really stressed badly.Going into this with a high VL and being a 1a..and now had to be told about docs patients who have APLASTIC Im besides myself. SIgh.......................

Thank you
96938 tn?1189803458
There isn't anyone who has any sense who does not go into treatment frightened.  The emotional ingredient that needs to accompany fright is committment.  If you are not committed, don't start. If you don't start, you need to keep an eye on the med's expiration date.  And, if you don't start are you putting at risk the free meds that are being given to you?
By the way, I have nver read here (over a few years now) anyone who has incurred Aplastic Anemia for tx, Hemolytic anemia - lots.  But, that just my observation.  If you did start tx this week, you would not have 75 million next week.  Besides, it's not a matter of how many you have, it's a matter of how few (like zero) you have.
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