Some questions before doctor's appointment tomorrow

[Bovary73]

Hi,

have an appointment with tx doctor tomorrow. First of all it's for bloodworks (hgb).
Friday was my 16th shot (have 12 more). My hgb is at about 8.5 and I just can't handle the anemia anymore. I've been at about 8.1-8.5 since week 6-7 now and don't have any extra energy left to deal with the anemia.
I'm struggling with all the sides because of this (short breath, heart pounds fast etc.) I feel that this is the limit of what I can handle. My body just can't take it anymore.

I don't want to quit, but I can't continue like this.

As some of you know, my doc don't want to give me Epo/Procrit.

My questions for tomorrow are:
- why the **** can't I get rescue drugs for the anemia?
I'm just not satisfied with tx doc's answer to this: that my erythropoietin levels are already high (140) so giving me more of this hormone won't have any effect on my hgb. I just don't understand why most of you people in here who get Procrit, benefits from it, while I wouldn't? Anyone have any knowledge about this? Erythropoietin levels and rescue drugs?

- my other question is: why does he not want to reduce on my meds? I'm on 800 mg Ribavirin (being petite). He says because of the already low dose he does not want to reduce.

I talked to a doctor (a friend) about this, and she said that I at least should ask about transfusions every week instead of every second week. I mentionned this to my tx doc and he said that this is not a good option because of the risks of transfuions as well.

So: he gives me no options than just hang in for the rest of tx with a hgb at 8-8.5. I can not handle it any longer. I need a plan, something to help me out of this.

Anyone with knowledge about this who can answer?

Really need some facts before meeting my doctor tomorrow.

I'm so exhausted right now so sorry if my writing is bad. Hope you get the point. And if anyone has some "aswers" to how this should be handled, please write.

Thanks :)

[flcyclist]

You are strong and you will get through this.  I can hear it in your words that although your struggling, you have the determination to get to the finish line and give yourself the best opportunity for beating this.  As you say with your doctor, it is what it is.  That is unfortunate and frustrating, but if you can't change their mind or have the opportunity to switch to another doctor, then you must push on.  A biweekly transfusion sounds like your only relief and hope that makes you feel better, even if for only a short while.  Hang in there.  This will all be over soon.  

[Bovary73]

Willb: I forgot to answer to your post here concerning hgb at 9.6 that was mesured the 23rd of april. I had a BT on the 12th when my hgb was at 8.7 This last round I waited 18 days insted of 13-14 days between the transfusions and it dropped down to 7.3 yesterday (30 April). So it seems theres a "pattern" of hgb dropping down to a level when BT is needed every second week. That meens I will probably need 5 more..just a question: after the last pills are taken (my end day is the 20 July). Will I be needing BT after this to stabilize the Hgb? Or will it rise by itself right after tx?
Flcyclist: thanks for thinking I'm strong...I really don't feel that way right now..and I don't understand how my story can be inspiring others...I feel like this is the bad story about how doctors treat us differently..and my fight between the information I seek on my own (here) in conflict with what my doctor says. Frustrating. I just give up that fight right now and feel I'm closing my eyes and hoping to come out of this and win the fight against Hcv.
Idyllic: I know that Rex is in Europe and he get's Procrit for his low hgb, so my doc's arguments doesn't seem to make any sense...but I just can't argue with him about this...we don't have the possibility to choose doctors here in Norway, and we don't have specialists in hepatitis C. He is just following the "protocols" for how we treat in Norway...not the protocols for Boceprevir...so. That's just the way it is around here.

When all this is said: I'm still having good days, when I can forget for a while that I'm not ok. And it's spring, everything around us blossom, the sun is finally showing it's warmth and it heals in some ways. We will eventually get through this, all of us. Being in this fight takes all our energy, all our attention, and it's hard sometimes to think positive. But we have to. I'm a bit sentimental right now, but I'm ok. Have a nice day, all of you wonderfull people in here. I couldn't do this without you. Thanks!

[Idyllic]

Finally your doctor has come round!! You had to have felt like the walking dead for the past couple of days! I honestly do not know how you did it. I agree you are truly an inspiration for the rest of us to hang in there and soldier on!  I hope you recover your energy very very soon♥

_____________________

It's not just how dangerous low Hgb is or how at risk one is, in many of the studies & literature "Quality of Life" is a factor taken into consideration in deciding when to intervene with Procrit or Riba Dose Reduction. I keep thinking about your doctor's comment how in the US doctors use too many rescue drugs but so far what I have seen has been consistent with Incivek/Boceprvir the prescribing information. It's just an interesting statement. Boceprevir and Telaprevir are now approved for use UK and it'll be interesting to see how doctors there (or the NHS) deal with intervention when Hgb levels plummet.

[flcyclist]

I can't imagine what the low 7's must feel like.  You're one tough cookie.  It is good to hear that you are no dose reducing and giving yourself the best chance for SVR.  I hope you can hang in there for the remainder of tx and your hgb will level off and allow you some relief for a while.  Hearing your story provides others struggling with tx some inspiration.  Best to you.

[Bovary73]

Back again from hospital and got 2 units (400 ml x 2) of blood. I feel so much better now! Wow! It's wonderful. I will enjoy this as long as it lasts and it will keep me going for some weeks hopefully til next round. This was my 5th BT.
My mother is taking care of our kids for a few days so now I am going to lay on the coach and get some massage of feet from my husband :)
Falala, I hope you will get help with your low hgb. I think for some of us, it stabilizes by itself after a while. In my case it don't, but the transfusions helps out and makes it manageable for some time.
I'm not reducing on the meds and my doctor says that it's not dangerous with my low hgb, only uncomfortable. I have no heart or lung desease and to know that it's not dangerous, helps me out a bit. 11 more shots now and hopefully UND through the rest of tx - and SVR in the end. It will all be worth it :)

[FaLaLa137]

I'm sorry to hear about the troubles with the HGB levels.  I'm watching your situation closely as my last labs were 9.6 and I have been steadily decling as well.  I can't imagine having such low levels and having the young kids....they are a lot of work without any energy of your own.  keep us updated.....

[Sentinel13]

Hi Bovary: I just read your post for the first time. So sorry to heard of the roller coaster hemoglobin.

Even if a does reduction in riba helps a little, there is something about your body that keeps driving the hemoglobin down where regular transfusions are necessary. While I empathize with you regarding the anemia, given your situation, it's possible that a dose reduction in riba may only delay the next transfusion by a day or two.

According to the following presentation, both the protease inhibitor and the riba are necessary because they attempt to eradicate different aspects of the virus.

http://74.43.177.57/courses/2010/pg/pawlotsky/player.html

It's so very frustrating for you trying to raise little ones, and run a business, without energy.

Sorry, no words of wisdom for you.

V/r,
Glenn

[1oftheclub222]

How many more weeks of treatment do you have to go?

I know people have said that reducing to 600 mg probably wouldn't do much, but if your doc is ok with it, I would try.  

You do kow that staying the course is not working for you, the main goal is to try to complete treatment.  

My doctor told me that the Rib does it's most work in the first few weeks, and studies have shown that reducing Rib if you are UND early hasn't proven to be detrimental to treatment.  Just my 2 cents....Hope you feel better soon...

[LookingForward12]

I don't blame you for feeling fed up with all of this! When my hgb was at 7.7, I could barely stand up. That was when my doctor finally put me in the hospital
For a transfusion. I  received four units at one go, which t  my hgb up to 13.4. After one small dip to 9.9 it has been holding steady in the 11 range. Of course, my RIBA was interrupted for four days at the transfusion and then subsequently reduced.
How much of a transfusion do you usually get? Number of units?

[Bovary73]

Just a little update after my bloodwork today. I called the hospital when I came back home to find out the results and my hgb is down at 7.3...I'm so fed up right now. Waiting for the doctor to call back to see if I can get a transfusion today. I haven't reduced on the Ribavirin yet. I'm so fed up right now of and scared of the hgb getting so low again. This is the first time I've been that low.

[Idyllic]

At least your doc is willing to intervene if your Hgb reaches 8.5,  My levels are higher than yours at 10.1 and I investigated the possibility of Procrti with my Insurance company just so I would be organized I went lower but I seem to have leveled off at 10.1.

In my particular case I did not actually purse the matter with my doctor however since I knew does reduction would be his first suggestion and I don't want to reduce my RIBA.

It's an inconvenience and I tire easily. I am unhappy I cannot train at the level I am accustomed to but if I think about it I know it will bum me out. I just come on line and see how everyone else is coping and sometimes that helps.♫

Hang in there Doll!! I hope you check in once in a while so we know how you are doing especially since things could change more rapidly not that you are on the Vic. ♥

[1oftheclub222]

Just wanted to say I hope you are feeling ok today, it's been 2 days now since you first posted this...that's two days less you have to go now...just take it one day at a time and do the best you can until you can't anymore...that's all anyone can do

[willbb]

I would agree with cando on the Riba reduction to 600 from 800 at this point would most likely have little effect as it very well may be the Vic. that is most casual of the  low HGB.
I see you posted on the 22nd that your HGB was 8.5 and now without doing any intervention it is 9.6 ,therefore hopfully stabilizing.

I see you doctor made this comment:
"That in US you tend to use more drugs (rescue drugs) but that it's not necessarily right."
There is something to be said for his logic on that. For most patients doing HCV treatment "moderate anemia " levels " are not dangerous.
Unless one has certain heart or lung issues (hopfully tested for by EKG) prior to treating a HGB of 9.6 is  usually not dangerous.  It can sure make you feel lousy and effect quality of life somewhat ,however for most can be sustained without ceasing tx.

Hopfully the HGB. has stabilized for now  it sounds like they are testing it frequently and it it drops again,below sustainable levels ,because you are having a good overall response to treatment it is crucial you and your doctor do whatever it takes to continue .(either another BT ,Epo introduction , possibly reducing the Riba. or combinations of ...)
Best of luck
Will

[1swimmer]

Hi there!
I am following your posts and wishing you the best. I am interested in the DR conversation because is busy topic w/ this treatment. Information for me is important. I have no problem sharing info w/ my doc.
So, hang in there!
C

[can-do-man]

When i was on Vic even with two shots of 40,000 procrit a week in the 9's was has good as it got, to me its looks like you might have become stable since you have not reduced and not added procrit. Myself i just don't think reducing 200mg will make enough of a difference in how you feel. Even if it got your hgb to 10.... Nor do i think reducing 200mg will effect your outcome.

Myself I would stay on the same dose but the most important thing is being able to stay on treatment........ Your in a tough spot, best to you in whatever you decide.

[Bovary73]

Hi,
here comes a little update after my meeting with the doctor.
My hgb yesterday was at 9.6 and therefore I didn't need a transfusion yet. Have a new check in a week to see if it's needed then.

When I referred to what I've read about erythropietin levels under 200 can qualify to get Epo/Procrit (mine is at about 140) he said that in Europe we treat differently compared to the US. That in US you tend to use more drugs (rescue drugs) but that it's not necessarily right. He said that giving me Epo would be like whiping a donkey that is already running as fast as it can up a steep hill..that it's just not good for my body right now is what he's trying to tell. I was so exhausted that I just run out of arguments.

I then asked about reducing on the meds (Ribavirin). He said he had consulted with some of the experts on this in Norway and that they dindn't have enough material (research) on people already on low doses being reduced.

I said that this is a matter of being able to go through treatment for me. That I can't handle being so low on hgb for 12 more weeks. I said that I was willing to try and reduce from 800 to 600 mg. We sort of agreed that this is what I am going to do. But it doesn't feel like he's approving it.

When it comes to BT, he said that there's always some risks with it. He said that it's like a transplant, that I get tissue from the donated blood each time and this is not good.

So, he does not come up with any rescue from low hgb. He can offer BT when needed (when I'm down at about 8.5).

I took the doses as usual this morning, not feeling comfortable with reducing after talking to him. I just don't know what to do. Should I just reduce and take that risk on my own, without even knowing if it helps?

I'm about to realize that I will just have to deal with this. There's nothing else to do. I will have to crawl my way through the rest of tx.

My doctor does just not respond to the information that I present to him through what I learn from you guys.

As long as it's not dangerous to be anemic, I will just have to accept that this is the way my tx will be. I can't change the politics of health care in Norway. Too exhausted right now.

You are all so helpfull here and I learn so much from you. Being ignorant is sometimes easier. Not seeking information on my own. Just trusting the doctors.

So; you don't think a reduction to 600 mg would do any good? Then I just stay on the 800..?

[Idyllic]

Hey Lady ~ I have been thinking about you and wondering :how your doctor's appointment worked out. I just noticed you are taking the Victrelis. That means the longer you take it the lower your Hgb levels could go.

Also, there was this tid-bit in an article I read:

"Anemia is a known ribavirin-related toxicity exacerbated by the addition of TVR or BOC."

http://www.natap.org/2012/HCV/021512_01.htm

This is perhaps the reason Riba dose reduction tends to be the first line of treatment for anemia. The other aspect that is frustrating is that Hgb of 10 g/dl is the level at which action may be taken to address anemia if need be.

I wish I understood more about BOC and what possible reason your doctor seems to be unconcerned by your declining Hgb levels - especially since recent studies have confirmed Riba dose reduction/EPO does not negatively effect SVR levels in folks who are UND.

http://hepatitiscnewdrugs.blogspot.com/2012/04/easl-anemia-management-strategies-used.html

I was wondering if it was too late to print these two articles and have your doctor read them. Maybe that seems a little pretentious (I'd feel awkward doing it!) but I would hate to see you discontinue treatment because your anemia is not being effectively managed. On the other had, Frijole's suggestion to get a referral to a Hemotologist is a good one!

Hope you post soon & are doing OK!

[frijole]

See if you can get a referral to a hemotologist - a blood specialist.  I think maybe your doctor is in over his head here.  If you were not getting the transfusions I think you would have to quit treatment.  It seems to me the epo is a steadier way to go but if he wont rx it and won't give you a referral, try to get one from your regular doctor.  I just don't see how you can do this, remaining in the 8s and like flcyclist said, with VIC the anemia is not going away.  I am on week 35 with VIC and have never had hgb in the 8s but even now, at this late date, it has dropped again into the 9s.  So keep pushing.  Get a copy (online of the dosing info for Procrit and show it to your doctor.


good luck
frijole

[Idyllic]

Going to 600mg i don't think would help any as the Vic is the main problem and one can't reduce that.
___________________

This is a really interesting post. There have been a few articles recently how RIBA dose reduction does not effect SVR while on the new PI's yet it apparently doesn't matter since it is the PI causing the anemia? The protocal even seems to be reduce the RIBA before Procrit or possibly even BT.

Actually, the most recent article refers to Incivek not Victrelis (which is what Bovary is taking). From (EASL) 2012:

"Since ribavirin dose reduction was the mainstay of anemia management in the telaprevir development programme, these data suggest that reducing the ribavirin dose did not impact SVR rates."

______
A lot of people seem to assume Incivek & Victrelis have more similarities than they apparently actually do. I wonder if it because there is only a handful of folks taking the Vic?

[can-do-man]

Sorry to hear this and i really hope something can be worked out as you have come way to far and have very high odds on gaining SVR to throw in the towel now. I'm not sure being that your on only 800mg of riba that even a slight reduction in dose will help much. Going to 600mg i don't think would help any as the Vic is the main problem and one can't reduce that.

If he doesn't think procrit will help then maybe you can talk him into a BT of a few units to give you a boost for a few weeks, if all fails one can reduce on their own and much better then just having to stop. Good luck, you have come along way girl.

[LookingForward12]

I think you should arm yourself with the research and present it to him. I was surprised that my doctor waited so long to do something. The first Procrit shot I received at 8.5 did no good and I continued to drop down to 7.7.....i couldnt even stand up! This was at week eight of treatment with Incivek. I ended up going in the hospital for a four unit transfusion. This caused my hgb to rise dramatically to 13.6 - after dipping to 9.9 at week 12 and receiving a Procrit shot, I have been hovering around 11.4 ever since. He also reduced my ribavirin to 400 mg.
Be firm and be strong! I'm rooting for you!

[flcyclist]

Also came across this: EASL-Anemia Management Strategies Used With VICTRELIS® (boceprevir) Combination Therapy.

"The rates of SVR were 71 percent for both groups: those patients whose anemia was managed by ribavirin dose reduction (178/249) and those patients whose anemia was managed by the addition of erythropoietin (EPO) (178/251)."

http://hepatitiscnewdrugs.blogspot.com/2012/04/easl-anemia-management-strategies-used.html

[flcyclist]

So sorry to hear you're going through the anemia.  Many doctors won't consider transfusions until the hgb goes below 8.0 due to their associated risks.  It sounds like you're having a transfusion about every 2nd week, so it sounds like your doctor is willing to compromise.  Some people tolerate these lower numbers better than others and it sounds like your doctor is hoping you can tough your way through this.  

http://www.anemia.org/patients/feature-articles/content.php?contentid=000482&sectionid=00015

The prescribing information for Procrit states the following: "Treatment of patients with grossly elevated serum erythropoietin levels (e.g., >200 mUnits/mL) is not recommended."  Since your level is currently at 140, perhaps your doctor would be willing to consider Procrit to see if you respond.  Unfortunately, it does take at least a week or two to respond, so even if the doc allows it, you'll be toughing it for another two weeks until it kicks in.  It may be worth pursuing.  

http://www.aasld.org/patients/drugalerts/Pages/Procrit.aspx

Since you are using Victrelis, your hgb will likely be an issue for the remainder of tx.   According to the prescribing information for Victrelis (section 5.2),  If hemoglobin is less than 10 g/dL, a decrease in dosage or interruption of ribavirin is recommended; and if hemoglobin is less than 8.5 g/dL, discontinuation of ribavirin is recommended [see Adverse Reactions (6.1) and Clinical Studies(14)].  If your doc won't prescribe Procrit, this sounds like the next logical choice.

http://www.victrelis.com/boceprevir/victrelis/hcp/dosing-for-victrelis/hep-c-treatment/#            - go to the prescribing information link from here.

If your doctor isn't willing to budge on administering Procrit, I'd strongly suggest the reduction of ribavirin to 600/day.  The good thing about a Riba reduction is the resulting increase in hgb could be very quick and you may feel some immediate relief.  The last alternative is an interruption of Riba.  Since you're a Geno 1a (same as me) and didn't have a und until week 8, I'd be cautious with stopping the Riba unless needed.  

I really feel for you.  Coming this far and feeling like quitting must be an awful feeling.  I sincerely hope you can convince your doctor to take some action, rather than just expecting you can tough this out.  If the doc understands you can no longer continue, perhaps they will consider some alternatives.  

Wish you the best and hope you can hang in there.  :)

[Idyllic]

Your Hgb levels are around 8 - 8.5 and your doctor won't do anything? Not even a dose reduction? I have read that Riba dose reduction does not reduce chances of SVR when taking Incviek - but that is the Inceivek stage. I haven't really seen much assurance of Riba dose reduction when taking just the Peg & Riba.

I wonder if that makes a difference? 600 might be right if you are petite.

I am not sure what to suggest but there has to be a way to reason with your doctor. It sounds dangerous and risky to try to function at that level. I have a huge set of stairs in my house that even people in shape dread. I can't imagine trying to negotiate them a few times a day on Hgb levels like yours. And forget about driving! I am not trying to freak you out but is there a way to point out things like this to reason with your doctor?

I am certain more experienced members will be able to offer insight. The things is the time difference has me a little concerned since you are in Norway but I bet some folks will be on line soon.

I hope this works out and you are persistent about this.