What are rescue drugs for?

[SisterHelp]

My sister has had HCV for 28 years (she is 45 now) and her PCP told me it has been pretty much stable the entire 28 years (but he was just looking at forwards that my sister's hematologist had sent to him).  Is it uncommon to be "stable" for this long?  I have recently become involved with her medical issues and have been giving myself a crash course on HCV.  She is in the middle of changing Hematologists and the next available apt. her new doctor has is in July.  Her PCP did have some blood work done on her and her viral load was a little over 7 million but all her liver counts were normal.  I don't know her genotype, her grade or her stage.  I guess I'm going to have to wait till July to find out because her PCP couldn't answer any of these questions.  My sister was never willing to do Interferon therapy because she was afraid she would be unable to work.   Now she is unemployed and I thinking that she should go for it this summer.   On this forum, people mention rescue drugs.  Why would someone undergoing treatment need rescue drugs?  What are the rescue drugs for and do you have to stop treatment if you need them?  My sister lives alone but I am only 2 miles from her.  So I can help her as much as I'm able to.  

[SisterHelp]

If a HCV patient's platelets drop to low during TX can't they get a platelet transfusion?  Is there such a thing?  If I have the same blood type as her I would gladly donate.  I am a regular blood donor.

I will collect all her past labs and biopsy findings and post again when I have more info.  Thanks for all your help

[FlGuy]

The tx meds have a long list of potential side effects (see pegasys.com or pegintron.com), including some psychological ones.  Many people of this forum have been under various medications going in to treatment and other have used various meds (ADs mostly it seems) while on treatment.  It's a subject that you should explore with the doc.  Many people have used the programs of the med makers.  I forget which is which but Pegasys (Roche) has one as does Schering and I've read they are very helpful but have their own set of requirements that don't seem so onerous for free or reduced price meds. Just  another item to be checked on the list.

tsh is thyroid stimulating hormone, a thyroid test. It's a separate test that is not in the other panel tests.  Some docs will want to get a baseline since the meds (I think it the peginterferon) that can affect the thyroid and many people have reported those kinds of issues.

Geno type is a significant piece to know, it has a lot of bearing on treatment duration.  

[SisterHelp]

Hey FlGuy - That is a great website that you recommended!

[SisterHelp]

To FlGuy,
Unfortunately, I do not have any musical talents.  However, many other engineers that I work with are very musically talented.  My office mate is a fabulous violinist and another guy I use to sit with was a concert pianist.  Math is also not my strong point.   I do however have a very organized and logical mind and think that is why I have found success in the software field.  

Once my sister's doc gets all her records I will make a trip (with my sister of course)
and get all her past labs.  The tests that you suggested (excluding the geno-typing) I think I have in front of me (which were just done a week ago).  The tests include Hematology, Differential(absolute count), Hep B Surface Antibody Quantitative, Comp Metabolic Panel,  and HCV Viral RNA Quant Real-Time PCR.   What's tsh (I don't see that)?  I'm sure that her old Hep doc must have done geno-typing on her and that will be in her records.  My sister is due for a biopsy this summer as her last one was done in 2004.   My sister was also inoculated for Hep A and B last summer.  I have failed to mention that she is on Citalopram for anxiety.  This comes from our father who had generalized anxiety disorder and PTSD (post traumatic stress disorder).  I also have generalized anxiety that is pretty well controlled with Citalopram.  Do you think that this is going to effect her if she undergoes TX?  I know that there can be mental side effects but I haven't heard too many people undergoing  TX, in this forum, complaining about them.  Should she get involved in the "In Charge" program?  Is this program helpful?  I'm also going to have to investigate some financial help for her if she starts TX.  As I said before, she is unemployed and waiting on a SSD claim.  She does have COBRA but it is expensive and the insurance has a $3000.00 deductible.  I am currently looking into Mass Health for her (MA now has mandatory health insurance - you must have it or are tax penalized). I have gotten some useful information from other threads regarding financial assistance for qualified patients from the pharmaceutical companies.
All your suggestions are excellent and I am getting organized for our first meet in July with her new doc.

[FlGuy]

I'd make a suggestion since sis getting to see the hep doc seems to be a tough ticket.  Gather any labs reports that she has or can get and put them in some order, chronological might help.  Then, a few weeks before the appointment talk to the doc's office to get lab orders for a current view.  They will likely order cbc, liver panel, geno-typing, pcr, metabolic panel and maybe tsh. The pcr takes about a week.  If you have all this done before the appointment then the discussion will be more relevant.  The only piece missing will be the biopsy which he will probably not order until he sees her.

I have worked in the software development realm, though not a developer myself, for many years.  During that time I have taken an informal survey of people (actual developers or technicians) and have found that the vast majority have some music- related talents. You are now a part of my survey. Do you?  I think it's all math-based and think that's the commonality.

[FlGuy]

Where many doc's use a lot of varied data to make a 'guess' at relative damage, and I think appropriately so, my doc see a little more relevance to things like platelets, muscle tone, appearance of things like spider nevi and ast/alt.  After the biopsy he was kind of proud of his initial assessment and said 'See, I told you you had significant damage'.  I was duly unimpressed by his crowing at my condition.  Generally speaking, I see that people who have advanced fibrosis more often than not have lower platelets.  At 171, I think, sis is in the normal range but in the lower end. Normal range is about 140-450 if I recall.  I was averaging in the 120 range for a while and it then dropped over 50% on treatment.

One thing to note is that platelets take a beating on treatment.  Unlike red and white cell rescue drugs there are non for platelets.  (a little caveat here: there is one in development now and another that is used for cancer patient but docs won't use it for hcv since it cause anemia and it's not approved for hcv).  Low platelets is a reason to stop treatment so it stands to reason that people with decreasing platelets may have another reason to treat sooner, rather than later.

My reading hints to me that fibrosis is reversible but the opinion of reversible cirrhosis is not universal.  My personal feeling is that if I have halted any more progression with treatment and there is neither advancement or reversal, I'd be a pretty satisfied guy with my status quo.

Here's a web site that has a lot of readable information that even I was able to follow.  It also has references to other sites and data for further research.

http://www.janis7hepc.com/

[SisterHelp]

To: FlGuy,
I am a total believer in being educated about one's medical conditions and then making educated decisions based on that knowledge.  In my own case I have often questioned doctor's therapies or decisions and together we have be able to come to a compromising treatment.  Although medicine in not the field I work in, I am a software engineer, I am very interested in it so catch on quickly.  

My sister's platelet count was 171.   From my research so far I have learned that there is a relationship between the platelet count and the degree of liver fibrosis in patients with chronic HCV.  The definition I found for fibrosis is "Fibrosis occurs when excessive scar tissue builds up faster than it can be broken down and removed
from the liver.".  I have to admit that I am not entirely clear about the diff between fibrosis and cirrhosis. I think that cirrhosis is the end stage of Fibrosis and that early stage Fibrosis is reversible but cirrhosis isn't.  What do you think about my sister's platelet count?  Does her count mean anything to you?  
Thanks again!

[FlGuy]

Many other signs and symptoms can accompany hcv.  Good thing is that a hep doc will have knowledge diverticulitis and other stuff in that particular neighborhood.  I was also dx'd with Barretts, Gerd and a couple of others which the doc ascribed to hcv but I'm still not totally convinced. Different docs have different approaches on when to treat.  I had hcv for about 30 years before I was diagnosed and never had any significant cage-rattling symptoms.  After all the investigative steps, turns out I had early cirrhosis so treatment decision was a no-brainer. Not to scare or alarm, but not being bothered by hvc does not equate to not being affected by it.  Her ast/alt are both within the range of normal.  Have any idea what her platelet count is? It would be found as a result on a cbc.  As to patient decisions, I'm all for them.  But to take the responsibility for such decisions it takes getting familiar with the aspects and a communicative relationship with a doc.  It's a little more than a coin toss.  But, when it comes to hcv, some decisions and approaches are really a ****-shoot.

[SisterHelp]

Thanks Izzy!  I'm checking it out now.

[Isobella]

Hi Sister,

The link I pasted below was very helpful to me when preparing for my first visits with my doctor.  It also mentions another thread that I think had an actual list of questions if I remember correctly. Maybe you can find it in the archives.

Best of luck to both you and your sister.  She is fortunate to have you!

http://www.medhelp.org/posts/show/438611

Izzy

[SisterHelp]

To FlGuy,
Thanks again.  I'm making a list of questions to bring with me when I get to see her new doc in July.  My Sister's AST was 24 and her ALT was 34.  She was telling me today that she sometimes has pain on her right side slightly below her belly button and that she thought it had something to do with her Hep C.  The pain sounds too low to be related to the liver.  I think it may be related to her diverticulosis acting up.  Can HCV cause pain in the liver?  As a general rule, do doctor's usually wait 28 years before treating someone's HCV?  From what I've been reading it seems like the new way of thinking is to treat is as soon as possible.  My sister's old Hep. doc told her that if she wanted to do Interferon therapy she could but her HCV hasn't bothered her up to this point so he didn't think it would be an issue in the future.  Now this is coming from my sister but does this sound like something a good Hepatologist would say to his HCV patient?
I appreciate all the help!

[FlGuy]

7.9 million is considered in the low range of 'high'.  The thing about VL is that it can bounce around, as can the liver-related enzymes that are indicators (AST, ALT).  As a result there are many factors that come into play in a full look at HCV.  Yes, Procrit is a rescue drug and sometimes referred to here as EPO, Epogen, Aranesp.  It's job is to increase red cells, as a result of treatment-induce anemia.  There are a few different kinds of anemia.  Hemolytic anemia is usually the culprit in hcv tx.  Neupogen aka filgrastim is another rescue drug that is typically used to encourage growth of white cells call neutrophils.  Docs monitor these levels via CBC (complete blood count) your sis, and your mom,  probably have had several cbc's.

When she sees the doc and if treatment is recommended, part of the discussion should include the doc's strategy and tactics for introducing these kinds of meds.  Too often docs will reduce the tx meds rather than treating the hcv and its affects aggressively.

[SisterHelp]

Yes, yes I'm going to ask all these questions when I go with her to her appointment in July.  They won't talk to her sister over the phone.  Her records are in the process of being transferred to her new Gastro doc.  July was the earliest apt. she could get.
Her blood work done last week showed a viral load of 7.9 million.  Do you consider this high in regards to treatment response?  

Is Procrit an example of one Rescue drug?  My elderly mom gets Procrit shots for chronic anemia and they have really helped.

[Bobby1952]

   Viral load being high does not affect the amount of liver damage. The only consequrence of a high Viral load is that sometimes people with it respond less to treatment.
  You really need to ask her Hepatologist her stage and grade from the Liver BX.

Bobby

[SisterHelp]

Thanks for responding FlGuy.  I did mean hepatologist.  But I don't think her new doc specializes in this - he is just a Gasto doc but highly recommended by her PCP.  My sister has had several biopsies done in the past. The PCP (again looking at forwards) told me they saw slight inflammation of the liver in 2004.  I'm very curious to see what some of her other tests have shown for viral load.  Is the viral load relational to the amount of liver damage being done?  If it's low then would one expect less damage but high means that more damage is being done?  The forwards the PCP had never gave a stage, grade or genotype.   My sister did tell me her hepatologist told her she had the worst type which makes me believe that she has type 1 since this is the least responsive type to treatment.  You see why I need to become involved since she has had this for 28 years and still knows nothing about it.  It's not her fault.  She had two very serious auto accidents in the past with head injuries (amongst other things) that has left her with some neurological  deficits.  The first accident in 1980 caused her to need a blood transfusion and this is where she contracted the HCV which was diagnosed within two months while she was doing a 3 month rehab stint.  But she is a great kid, uncomplaining, hardworking and has a smile for everyone.  She once said to me "Just because I'm in pain all the time doesn't mean I can't be pleasant".  I'm helping her get on SSD (social security disability).  Although she doesn't know much about HCV she is very good about listening to what the doctors tell her she should and should not do so she has not touched a drop of alcohol since diagnoses and is very careful about taking any meds that may stress her liver.  
Thanks again for you help!

[FlGuy]

The ****'s were meant to say 'fully assess'.  **** it.

[FlGuy]

First, a little glossary
Hepatologist - a doc specializing in liver stuff
Hematologist - a doc specialiszing in blood stuff
Stable - where livstock live and not necessarily a term associated with HCV

Not sure if you meant hematologist in your comments, but there is a connection to hematology and hepatology since HCV is a blood disease that affects the liver. All 3 kinds (hep, hemo, pcp) can order the correct tests to evaluate her condions. The Hep is probably better equipped to full ***** the situation.  Hepatology is a sub-specialty of Gastroenterology or Internal Medicine.  There are some very saavy GI's who specialize in diseases of the liver who are not hepatologists.
As for stable, hcv is usually a slow moving disease which can cause accumulated liver and other problems. Sure, some blood-based readings can appear to be normal but that does not mean that there is no damage being done.  That's where the hepatologist comes in to assess all factor and maybe including a liver biopsy.
On treatment (also referred to as TX) the nasty drugs can affect various components of the blood (red cells, white cells, platelets and others).  There are drugs that can counteract these effects and those are called rescue drugs. Some people, while on treatment directed by a hepatologist will consult with a hematologist to track the efffects of the meds while a person is on tx. Other people have the hepatologist call all the shots (no pun intended) for all aspects including the rescue drugs.
You mentioned stage and grade.  These are assessments of the liver condition (fibrosis ans inflamation) which are usually the pathologist's estimation after a biopsy.  The geno type is the finding of a blood test.
You're a good sis.