Aplastic Anemia

[charm27]

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.

[charm27]

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.

[FlGuy]

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.

[charm27]

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.

[Trish77]

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

[charm27]

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

[FlGuy]

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.

[charm27]

Thanks for your reply.  My doc said was due to the Peg and Riba this can happen. Its just ironic that 6 patients of his got  this from tx unfortunately. Three out of the 6 did 72 weeks he said.

[charm27]

I know I have never heard of Aplastic before on this forum either or anywhere else pertaining to HCV.
ALot of things happen that we are not made aware of. I was just told this at the wrong time. WIsh he didint tell me. I want to start now. I guess I just have to pull myslef together a little more. Ive been thrown alot of crappola the past few weeks and nothing has gone accordingly.
Im really not overconcerned with my VL.
Just everything ya know??

[FlGuy]

Think you should call the doc and specifically ask him what he said, to put your mind at ease.  When you read here that people are getting Procrit, it's to battle the anemia that can come from treatment. 6 out of 20 seems like a fairly high rate, but not exorbitant.  I had it myself, or more accurately avoided it with a procrit-like drug.  It's more the riba that causes anemia.  My understanding is (anyone jump in and set me straight) is that red blood cells have a life of a couple-few months in which they do their thing.  Riba cause the RBC's to 'pop' into oblivion - and die off at a younger age.  Bone marrow cannot keep up with the production of RBC's to replace those which die at a young age.  The result - anemia.  The remedy - Procrit like stuff which encourages the production fo RBC's to keep up with the death rate.
Call ht the gastro doc and re-ask him about the anemia.  There are several types of anemia and maybe he just mis-spoke.

[charm27]

I put a  call into the office already. He will call me back. APLASTIC sort of sticks in your mind the way SICKLE CELL Does..you know? I know I heard right because we discussed this for over 20 minutes last night. Actually I thought he was surprised as to having 6 patients with this. When he discussd anemia I said well..procrit is given He said yes however this is APLASTIC.
I will post later when I hear from him he's an angel an a very reputable man.
thanks so for replying-bad night

[frijole]

http://en.wikipedia.org/wiki/Aplastic_anemia

In aplastic anemia the bone marrow shuts down.  The red blood count, white blood count and platelets drop.  It is an autoimmune problem.  Now, we know that hep C treatment can, but not often does, cause autoimmune problems.  I think this is curious.  I don't understand why 6 paitents would get this but I am sure we do not have all the facts. Were they Dr. Jeffers' patients, or your GI's?

You are scaring yourself to death and others, I am sure.  Why do you have Pegasys in the fridge if you haven't started treatment and are being considered for a trial?  I don't understand.  Once you take the shot, the anxiety lays down.  Many of us get anemia, but for most of us, it is controllable.  
frijole

[charm27]

very long story I did not bring all this nonsense on myself  just a crazy situaion. Getting it from all ends. My hepatologist called me last evening and asked if I got in a trial I replied No. Starting Peg on Friday, I dont mean to scare anyone to death I just needed to question what was told to me .
I know all about the anemia that we all can get. Thats why I questioned the APLASTIC  anemia because I never heard it mentioned here in the forum and my hepatologist that referred me to U of M made me aware of this last nite. So I questioned it. I didint mean to scare anyone. I couldnt possibly tell you the entire scenario it would take too long.
Friole-sorry if I ruffled your feathers-just a ridiculous situation the past few weeks.

[charm27]

Getting back to you. The nurse just called me Yes I understood correctly.

[ladywhy]

I cannot believe the # of hurdles you have had to jump through since getting ready to BEGIN tx! Oy vay! I have been paying attention to all you have already gone through and I know that you are not trying to scare anyone...you just need support like the rest of us.....
You will get past this too. I'm rootin' for ya!
HUGS
Y

[charm27]

I cant belive it either stupid stuff ....its all boils down to timing. Everyone's timing has been off the docs. changing to Cobra...yadi yadi. Nothing hass been jiving. Thanks for your root! Boy can I use it.
These past few weeks have been bizarre.
Thanks alot :} :}

[frijole]

Sorry to sound abrasive.  I would just like to know more facts as this is so out of line with anything I have read before, and the doctor sounds like an alarmist.
frijole

[nygirl7]

I agree with the other guys I've been in here for a few years now and haven't ever heard of one person with aplastic anemia.  Yeah we do get hemolytic anemia - maybe he said the wrong thing (doctors do that a LOT).

I bet he meant to say hemolytic and just mispoke.  Lots of us have battled with that one and it's no fun but no reason NOT to do treatment.

Can you call and check?  Considering nobody who actually HAS HCV has ever heard of anyone having this before and nobody was EVER warned about it...it's a bit odd and like frijole said he sounds like an alarmist to me too.

[Lonestar823]

Charm, Perhaps frijole has a point in that your doctor just may have been in an alarmist mood that day.  The words Aplastic Anemia aren't words you'd easily misunderstand.  I heard them at the end of my treatment and I'll never forget them.  Aplastic?  I don't know, it seemed an odd word to me and so I'm sure I wouldn't forget it.  I was very anemic and doing three shots of procrit a week the last six months of treatment.  One day in my doctors office his nurse was helping me out with something and I started to ask about the anemia.  She talked about bone marrow sometimes shutting down after such a long treatment, (I did the long haul) and explained that's why my blood counts had been so low.  She didn't say I was suffering from Aplastic Anemia but she likened it to Aplastic Anemia.  Maybe that's what your doc meant.  Anyway, I lived, and if my treatment hadn't been successful, hard and long as it was, I would have done it again in a heartbeat.  You really don't need this headache just before starting.  

[charm27]

I know what each and every one is saying...he was never an alarmist..just wanted me to beware of "what could develop". I know this is NOT common whatsoever. And your probably right he too was in a "mode of alarming me obviously". What can I say? Its been a crappy month one thing on top of the other. Hopefully this too shall pass fast. :}
]Thanks for all your comments)

[frijole]

I r just read your profile and wanted to congratulate you for completing what must have been a very grueling treatment - 73 weeks on infergen.  My hat goes off tos you.  Are you officailly SVR (6 months post?)
frijole

[alagirl]

OK.  First of all.  The patients undoubtedly do not have permanent aplastic anemia.  They probably have severe hemolytic anemia brought on by ribarvirin usage which is very common.  They also have a reduction in platelets and a reduction in white blood cell counts.  These are all very normal side effects of interferon and ribavirin.  Interferon and ribavirin can cause low platelets.  Interferon almost always causes a reduced white blood cell count and we have addressed this many times before.  Ribavirin can and commonly does cause hemolytic anemia, sometimes severe but by no means untreatable, and NEITHER are any of these things an impediment to treatment if managed correctly.  Now, who and what kind of doc do you have?  Because it concerns me he is not already well aware of this.  But get him on the same page.  And get a hematologist, if you have trouble with your counts, who has experience with HCV patients.  Ok?

Secondly, I will tell you that even with me, who WENT INTO THIS with anemia of chronic disease AND had to have two units of blood transferred last week because I got as low as between 7-8 hgb, I am pleased to announce that although it has been rather hellish, I am now up to YES, almost an 11 hgb and I am at 36 hematacrit.  I was going to break the news in a big post but this is as good a place as any!

Now, and you may want to pass this on to your doc, my hematologist, and I know NYGirl's doc did this also, put me on a WHOMPING 80,000 units of procrit per week (1 shot twice per week) until we get me stabiliized at a healthy hgb and know I am going to stay there, and then I will reduce to 60,000 units per week (which is where Jim's doctor had him during treatment) and if I ever get past that, maybe I can move back down to 40,000 units.  We'll see.  The important thing is, low blood cell lines can be treated with very prompt attention and aggressive use of rescue drugs and your alarmist doc needs to understand how all this works or you need to find one you feel comfortable can get you through this.  Because you CAN do this!  If I can do this, you can do it.  Trust me on that.  I am a huge weenie.

[alagirl]

aplastic anemia basically really means in essence - that all three cell lines are retarded.  That's not actually the word I want, but you know, riba lol

At any rate, people are of course going to have reduced wbc, hgb, and platelets due to the treatment drugs.  So "technically" a doctor could call that aplastic anemia but truly it's an artificial aplastic anemia, and there are ways to increase every single set of cell lines with helper drugs, and I think we've discussed here before that there isn't even a lot of evidence to suggest that helper drugs are necessary for the wbc line except in the most egregious of cases.  Mine dipped down below 2 certainly, but eventually it came back up to almost 3 again, and seems to be holding there just fine.

The red blood cell lines, rbc, hgb, and hct are going to dip to one extent or another on EVERYONE and this most commonly begins the 2nd or 3rd week in.  

It concerns me a bit that her doc is calling these issues, taken together, "aplastic anemia" when they are all just normal effects of the tx drugs.

[Lonestar823]

Thank you frijole.  Yup, I just found out three weeks ago.  svr, one year post. I still type it in small letters like a whisper, just in case it changes it's mind. ; ]

[Lonestar823]

I'm sitting here with a big grin on my face.  Here's a wink & a smile for you too!  ; ]

[FlGuy]

The way you put it, kinda makes a little more sense to me now

[alagirl]

I still type it in small letters like a whisper, just in case it changes it's mind. ; ]
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Shout it.  Fair winds in the svr sails I hear :)  Congrats!  Gives those of us still going through tx good things to look forward to.

[alagirl]

all of that said, let me be the frickin first to tell you that it is important to PAY ATTENTION to your red blood cell count.  If it were me, I would be dosing with at least some amount of epogen from the beginning of treatment the loss or red blood cells is so common, however, sometimes insurance companies won't sign on for that.  I would definitely say charm, to get tested at least once a week for cbc's in your early treatment especially.

You don't want to end up in the ER like me and Jim and a couple of others so get help quickly if your red blood cell line falters.  Which it probably will to some extent.  Everyone's differs and a lot depends what you have going for you to begin with.  For me, unfortunately acute hep c had taken my count down just prior to starting tx, plus I HAVE anemia anyway, so it wasn't a good scene but other people start out with counts like 16 hgb and they tend to fare better I think.  Discuss though with your doc if he might want to start you on some procrit possibly at the beginning if he is concerned about your count, and if not, if he will at least start you immediately if there is an issue.