When is procit indicated?

[oneday]

What do the CBC's have to read to have procit indicated.  I heard that insurance companies require a huge drop in numbers that are ridiculous.  Is it the docs decision?  My WBC is 3.4   RBC 4.12  HGB 38.  I am just starting to feel very winded and heard from my primary care doc (not heptologist) that it's better to start early than wait.  According to these threads it has to drop a lot lower than mine.  I have an appt. on Weds. and would appreciate any feedback on this.

[doll face]

My doctor refused to start me on Procrit till my HGB dropped to 10.0 but by then I was begging him for it. Good luck

[oneday]

Correction....I was on the wrong line of my blood test.  HGB is 13....yikes.  You were all probably wondering what I was whining about......

[friole]

I am not sure how to read your hgb of 38.  The range for hgb is 12.5 to 15.5.  Perhaps you have given the Hemocrat which has a range of 37.2 - 46.7. (and I don't know what that does, exactly)

Most doc's won't rx the Procrit until the hgb drops to the 9's.  I was fortunate, and had it prescribed when my hgb went into the 10's.  When did you start tx?

[Forseegood]

Just wanted to thank you all for starting and participating in this thread. From everything I can see, treatment plans are far from standardized, and this will be very good for anyone starting treatment. thanks so much, and keep those posts coming on this thread! he he

[NYgirl]

Yup it's hemolytic anemia there really isn't any guesswork involved in that AT ALL

You totally need another opinion.  I mean what does he think it might be...? LOL that's sort of like saying I wonder what my dog is going to have a cat or a mouse when she gives birth? It's a DOG you idiot!

[GoofyDad]

Accdng to my Nurse, they wait for 11 to submit for Insurance approval. I actually started on Procrit at about 10.5 - by that time I was adjusting and felt pretty OK. Winded, not too active, but functional and not miserable. 13-13.5 was my worst spot on my slide from 15.5 to a bottom of 7. I'm back up to 8.4 and ready to Tango.

[NYgirl]

Isn't it odd when you just go up a little tiny bit you feel so much better?

It's amazing how resilient our bodies are.  I didn't realize you went down that low. No not on the down low...that your hgb had gone that far down ;-)

I'm glad you are on the way back up!

[friole]

So much of how you feel has to do with the drop in hgb, not the actual hgb.  13 is still pretty high, but if you started at 15, you would definitely feel it.  Amazingly, the body does adjust to the drop in the amount of oxygen in the blood.  I could feel every .5 drop in hgb during those first few weeks which is when mine dropped. I started at 14.6 and dropped to 10.8.  I function better in the 12's but the hemotologist is happy with my hgb in the 11's which is where it is staying with Procrit.  I think all you can do right now is get weekly or twice monthly CBC's and watch and wait
frijole

[NYgirl]

My hgb went from 15 to 9 in a little over a week - then they interceded with Epogen.

It does depend on where you go down from.  I just went back up to 15 recently, I was fine at 13.  9 was very, very bad.

Remember - treatment ITSELF is tiring.  Rest as much as you can and keep a good eye on the CBCs around weeks 3 - 5 that is when it almost caused me to quit.  It took at least two weeks for any effect from the Epogen and at that they had to increase it to twice a week to get me to start going back UP.  When I stopped dropping and stayed flat at 9 I even felt better than "when it was going down" if that makes sense.

What week are you on now?

[iceboy]

Im really frustrated now. My HGB is down to 7,9 and my doc does not want me to take the riba tonite and tomorrow, and wants me in for more bloodtests to determine what kind of anemia????. I have been asking for the epo since beginning of treatment, but itīs harder to get than gold. I feel my treatment is jeoperdized and my chances fading away.  Im totally bummed.

Have you heard of going totally off riba for such a short period. Does 24 hours make any difference. Would that break constitute that my chances of clearing go down by 25%. I have heard of lowering, but compleatly off..!!!???

[NYgirl]

I dont know the answer but man that just SUCKS is all I can say. THIS is proving the point why we need to ask BEFORE we treat if someone will INTERVENE WITH EPOGEN or Procrit!

I just do not understand it at all - except that my box of Epogen (10 vials) costs like $6000 or something for ONE box and perhaps it's an insurance question?

Maybe you can call your insurance directly and find out if they would cover it and THEN go back to the doctor and INSIST being put on it instead of taken off Riba?  I would not want to be dropped from the Riba for even a day.

I think I'd tell him "ok then I guess I'll just die and it will all be your fault because I am not going off it!"

PS I don't know if only one day would even make a difference or not doesn't some of it hang out in our bodies longer than that?

My heart is breaking for you and I am going to pray...STUPID STUPID DOCTOR!

THE EPO FIXED ME UP PERFECTLY! WHAT IS HIS REASON?  HE HAS TO HAVE ONE EVEN IF IT'S STUPID LIKE HIM?  ;-)

[cuteus]

get a new doctor ASAP! what does he mean by what kind of anemia? It is hemolytic anemia! no need for tests, Ribavirin does that to you. 24 hrs might not make a big difference, but you need a dr that knows what he is doing. This guy is playing with your health!

[cuteus]

I forgot you have the thalassemia to deal with, but this hgb drop is more likely to be hemolytic anemia and Procrit might help to keep it in check. It can't hurt to try. Others here have mentioned taking it with the same type of anemia and getting some help from it. He should at least try it.
good luck

[iceboy]

Yes, I guess I lost my guard because Im just zombie. I thought it would be OK cause I go in for tests every 4 days. but itīs not the amount of tests that counts. It was obvious where I was heading, and Im just stunned itīs happening. Im on the national health, so there is no insurance or anything like that. Just the docs descretion. To say something and defend the docs, they are probably being technical and probably very pro, because I have this Thalassemia and they have insisted all along that epo wont help me like others - but for gods sake, can I try please. I have never understood this properly - EPO is not allowed in the United Kingdom. I wander why?

Im only on week 7, but still....It feels like my life long effort to battle this... Im really tempted to keep on taking the riba - Im just thinking that might screw up this "special blood test" they want to conduct tomorrow!!? Have you heard of needing to stop the riba for a test?

Thank you all so much for responding. I feel so much better now. I was very emotional, and had to fight back the tears..

[iceboy]

Post crossed, yes you are right - I for one is convinced itīs just the same with thal or not. I just have to try. xxx

[friole]

I am so sorry they cannot see this clearly.  You are in Iceland, right?  Could they not refer you to a hemotologist to monitor the blood?  Treatment is hard enough without dealing with the anemia.  Please keep pursuing this.  I hope they will at least try
kathy

[NYgirl]

I am so sorry I can't imagine how miserable you are but if you keep taking the Riba most likely you are just going to continue to drop.  I too forgot about your Thalessmia (spelling?)

This doctor owes it to you to try SOMETHING to help I just do not understand.

[beamishboy]

sorry to hear about your situation....i hope all this is sorted out real soon..GOOD LUCK

[cuteus]

Good point Susan, it can be, if the hgb bounces up too high above your normal.
on that note, Nygirl, I wanted to warn you about the hgb increasing too much above that 15 you are now.  Too high it can be dangerous also. You might need to space the shots or cut back on the dose. consult your dr on this soon, please. The procrit insert makes the same warning.
be well

[susan400]

Please remember that Procrit has it's own side effects.  It's not a side-effect free drug.  There are possibilities of blood clots, increase in blood pressure, stroke, etc.  This is why the doctor want to err on the side of caution.  It is an excellent drug to help the anemia.  My white cells are really low, but my doctor won't prescribe any Neupogen until they fall even lower.

Susan

[iceboy]

Hi

I went to the hospital this morning and they seemd to be preparing to admitt me. They did order in blood for transfusion, but I hope it doesnīt come to that. Good news is that I got some erytropoietin (darbepoetin alfa) (brand name Aranesp). The bad thing is that itīs still not obvious hemolytic anemia (according to the bloodtest, I guess the reticulocyte count). I only spoke with the doc on the phone and he said it could be side from the interferon? still he does not want me to start on the riba until I get up to 8,5. (gives it til friday)

My progress so far is;
1b 23years+
vl 1.100.000
4 week 4.000

All the best my friends.

[jmjm530]

Ice,

Sounds like you're making progress and don't be afraid of the transfusion if required, as it may get you back on the riba faster.

Stopping riba and transfusing does not mean you won't SVR. In one Sweedish high-dose riba study, two patients had two transfusions each and both SVR'd. I'm sure they were off riba during the window transfusion window. You gotta do what you gotta do. Your docs seem on top of things now but maybe a little slow with the Procrit although I really don't know a lot about thalassemia anemia.

Are you saying your viral load was 4 IU/ml at week 4? It's an odd number but maybe you're using a different scale. Did they say you were non-detec? Also, I forgot if you biopsied or not and what level of fibrosis you have.

All the best and let us know how things work out.


2Irish,

Thanks for asking. Having good and bad days. I'm taking my 45th shot tonight and right now the plan is 52-weeks but don't hold me to it :) For now I've decided against increasing the riba beyond my current 1200mg/day because of my sides.

-- Jim

[Mister beagle bailey]

If I remember right you have Thalassemia anemia like me. Did you take the procrit?  Were you given any thing else for it?  My prayers are with you, please keep me informed.

BB

[iceboy]

jim, sorry we have the ., reverse... Itīs one-million-onehudred-thousand and dropped down to fourthousand IU/ml

Beagel, Yes this stuff im talking about in the previous post is procrit equalent. just different brand name I guess. How are you doing. You did start tratment, yes. I donīt stay as much as I want to on the board. I have a little difficulty reading now.

[2irish]

good luck to you.  i think your VL drop looks really good.  i had a dose reduction for 18 days after week 4 and i was still undetectable at 12 weeks.  i am sorry about the hosp. visit but if you need a transfusion don't fight it.  it will help you.  please tell the doctors about your eye problem.  good luck, we are all pulling for you!

[Mister beagle bailey]

Yes I started treating Sunday.  The first night was bad, chills, fever,etc. But that only lasted to the next morning, now I feel really good so far.  I'm really surprised how I feel.  I just hope it lasts, I know with this anemia I will have problems down the road. How many weeks on tx for you?  

BB

[jmjm530]

Sorry about your problems. You're in a difficult spot and the thalassemia is obviously complicating things. Whether or not Procrit is indicated in your case -- or whether you can realistically get hold of it in Iceland -- seems less important at this point than the impact of hgb 7.4 on your overall health.

I'd follow your docs advice and lay off the riba for a couple of doses while they run their tests which hopefully will give them a better bead on things.

Have they talked transfusion at all as you're getting very close to transfusion numbers? In terms of how agressively to pursue this, I'd weigh in other factors such as genotype and fibrosis stage and of course how you're holding up. We all want to get rid of the virus but treatment becomes counter productive when it does more harm than good.

All the best,

-- Jim

[2irish]

jim, was looking for you yesterday.  glad you are back.  getting around a bit more now?  are you feeling better and better?  did you make your decision on when you'll quit?  questions, questions, questions...

[Mister beagle bailey]

They shut us all down, there has been know new threads today yet they are not allowing any.

BB

[cougareyes]

I'm sorry in the above post there was more than one conversation going on, and my posting was to Kalio1.  Peace

[NYgirl]

Too bad all the people who actually came her with questions and for support and to reach out are now unable to and may believe that they have to face this alone.  It is heart breaking.  How can someone DO this to people they don't even know. It is mind boggling to say the least.

[Mister beagle bailey]

Cougar-- no offense taken, I know it get's confusing.  
Peace

BB


Kalio1--I think it may be the imposter, every thing was fine till he/she came on.  I didn't relize that someone could do that either.

So far I'm doing good. I just hope it keeps up, time will tell.

BB

[Mister beagle bailey]

It is a shame that this happened, I hope things get back to normal soon.  All of us need to post questions to get through this.

Let's hope it will work out and that Med Help is fixing it.

BB

[NYgirl]

BEST ADVICE I've HEARD!

I haVe to think of a question now...the one time I don't have one?  What's up with that?

[andyarundel]

How about these questions?

Why in heavens name would I get the impression that only I can decipher exactly what other people are posting about.

Is it because I am a born again Christian. What is a born again Christian anyway? Are they better than others who claim to follow the various philosophical teachings of Jesus of Nazareth? Is there a list of Christian things one can pass and be graded on?

Before you make accusations about others education, do take this little thought into consideration. Religion is a philosophy. Some may have far more education than some little bible college doles out. Some may even have doctorates conferred on them in the subject. If you wish to worship some invisible cloud being, that is your right and prerogative. Anytime you wish to debate scriptures in whatever version of whatever bible, bring it on. If you wish others to believe your claim of being educated, act like it rather than trying to give out bible lessons. It does not look good upon your stature on this board.

[cougareyes]

I'm no bible scholar but check out 2 Thessalonians 3:10    Peace

[Lynne5477]

RE:  Your ? on skipping Riba.
I completed tx over a yr ago and it seems I remember something about taking 80% of the meds is almost as good as 100% of the meds.  I think they did some studies and figured out how many doses patients had skipped or something to that effect.

Good luck to you.  And I hope your Hgb increases quickly.

[beamishboy]

Good Luck with the anemia issue..Sounds like your Doctor is taking every precaution..So, i guess i can't rationalize a trip to Iceland to shake things up-darn!! Heck i  sure wanted to check out the thermal greenhouses & hotsprings( & those icelandic bathing beautys.).I have heard they are very fond of mature medicated anemics wracked with occasional bursts of rage..followed by massive depression,interspersed with hotflashes and delusions.............Seriously,hope all gets sorted out for you- Take Care,tommy