Hey there,
Sorry about the delay in responding. Kind of pooped out last week. Spent the last several days snoozing. Still feel quite fatigued. Can't decide if it's due to an increase in riba or the addition of an antibiotic, which we have since discontinued. We'll see.
Anyway, thank you so much for the feedback. I'm starting to think that perhaps it is the pegasys that's causing the fluctuations. You always worry that maybe you've done something to just completely screw up the effectiveness of your tx, you know? I really worry about my diet. I'm just afraid that Tony's Pizza is probably not cutting it as far as my nutritional needs. But at this point, anything I can get down counts.
I'm convinced that my increase in riba is directly related to the increase in nausea, loss of appetite, and loss of weight. And my weight's been fluctuating wildly. Weird.
Anyway, thank you again for the warm thoughts. Sometimes I feel I'm running around in circles trying to make a pillow by catching a million scattered feathers in a single pillowcase. It's nice to hear that maybe even if I don't feel like I'm accomplishing much, it seems like I am. <G> And thank goodness my husband's the manager of the restaurant. I think the patrons are beginning to anticipate my evil mood swings. <gg> But sometimes, karaoke 7 nights a week can get to you. Just how many times can you hear a rendition of Bohemian Rhapsody?
Have a good one!
Hey there, sorry for the delay in response. I kind of checked out for five days and slept the long sleep. I seem to do that every two months now. I just did Peg Shot #53 last week. I'm hoping to be finished in April sometime. Yay!
But to answer your question re: thal and iron, I was very concerned about this. Especially since my mom suffered liver damage (which seems to have reversed itself) due to hemachromatosis, which is build-up of iron in her liver. She had to chelate (spelling?) with meds, but it seems to have solved the problem.
Anyway, she discovered the problem initially through routine bloodwork that revealed her ferritin was sky-high. So she really urged me to avoid the iron pills despite what the doctors had requested, as my ferritin, although not anywhere near hers, was still quite elevated. Definitely abnormal.
Here's the pinch. I stopped taking the iron pills without tell the docs, thinking it was kind of optional. Once I did that, my hgb shot down. Apparently, my iron saturation was a bit low, and without that supplemental iron, the procrit had nothing to work with. It almost got me pulled off of tx around last June. So I figure iron may be the lesser of evils in this regard. <G>
Hope you're doing well!
Now your talkin,,, Yet everyone responds differently. Since my wife was on 24 pills per day, PEG/RIB weekly, and 2 inject. daily for on-set diabetes 2, the latter due to Prograf is likely, I research everything worldwide. Procrit is just one thing that changes iron. Thanks for clarification. And as a sidebar, I don't believe in luck but deffinately believe in Grace. And I pray 24/7 that way for alot of folks. see-ya
I don't believe in luck ....
I was only trying to be friendly, my friend. I don't believe in the Tooth Fairy, but I indulge the people who do.....
I think maybe my post wasn't as clear as it could have been. I was trying to suggest to Wasabi that she might double check that her Doc had measured her iron levels since he already has her on supplemental iron.
My iron and feritin levels are currently sky-high. As I understand the mechanisms at work here, the RBCs being killed off by the riba release iron as they do their ashes-to-ashes dust-to-dust thing - sometimes leading to high iron readings. Liver inflamation can cause the feritin jump markedly, which is an un important number during tx. Low would be meaningful, high is not.
Of course we should all run everything we take by our Doctors. I certainly do. But I don't think it hurts to ask them about things either, like the possibility adding Folate when on Procrit.
Thanks for your comments. Good luck to you.
Patients on this treatment should not supp. anything without Drs. approval. This Tx. contradicts much of what we believe. My wife takes red and white cell boosters, post-trans. as the meds. & Hep are destroying her blood. But taking iron is not sound advice, we don't know, and more than a few specialists have told Eva to lay off any extra supps. and eat a healthy diet. Your derive what you need from foods. Have a Great Day!!!!!!!!!
Quick note, look at the archive notes about iron and treatment. The doc their confirme that iron levels go UP with Tx. Bye
As a follow up on the iron, I think Docs will normally test iron stores and feritin levels before adding supplemental iron. Worder if they checked your iron?
Since the iron is needed to manufacture RBCs it would stand to reason that if you do require supplementation you would need more as the procrit was raised, not less.
Also, I understand that B12 and Folate are needed for the production of RBC's. Doc has me on 1 gr Folic Acid (a rather high dose) and I've heard others take twice that.
Birth Control? Did I read that one right? On tx, anemic, running a busy restaurant, and....... birth control. Wasabi, you are an inspiration!
Nice to see you around again! Hope that the 80 Procrit will really do the job. 80 Epogen worked for me - and now finally I'm down to 40,000 once a week. SO much better!
My enzymes started in the 200s and are now currently down to a steady 15 - 25 area but they go up and down a little bit but not much really.
I agree that they can bounce around due to a lot of factors besides our meds especially I think if you are on IRON which is the one thing I was told under NO circumstances to take any iron no matter what as it assists with viral replication and we don't want that!
Even to the point I don't eat out of iron cookware any longer because the iron can bleed through into the food.
So I am surprised even with your anemia that they would have you on iron - and 80,000 Procrit. I would see if you could get rid of the iron now that you are on that much...that might help a lot.
Hi, I know alot about PEG. Fluctuations in blood work is part of this virus. Sometimes the Hep C is rearing its head and sometimes its the meds. Your Doc should know this unless you need a Hepatologist on board, working with the Gastroenterologist. I think I spelled that right. Also cannibis is safe. Period. My wife's bloodwork has been weekly for 3 years post transplant. The virus is mutated and is extremely agressive in her case. Fortunately majority of you will fare much better, and new treatments are comin. I Know, just maybe to late for my Eva. But your best chance to clear viral load is early treatment. I Know. In fact some of the most recent publications and some confrence disscussions revolve around my wife, or rather her case number. Also I would really look closely at takin iron supplements or any vitamins right now. We have learned that iron-overload is bad, and some vits. counteract badly with treatment. Please note that what is suppossed to help you in a healthy body can now do harm in some cases. Peg. Ribavarin., Peg-intron, etc. are very serious drugs on the human body. These combined with disease progression can sometimes speed up the scarring that leads to cirrosis that leads to transplant. Make sure you have competent medical advice that comes from folks working closely with Liver Disease. I can give you some good reliable sources of info if you'd like. Hang Tuff
Well, I guess I'm your guy for this answer. My Alt's where at 62, before starting tx. Week 2, shot up to over 100. They slowly started dropping, but NEVER normalized. By mid tx, they where just about 60, then jumped back up to the 80's.
Believe me, I racked the minds of EVERYONE, asked EVERY Doc, and questioned EVERY available resource. I got responses from Diertich, Schiff, and Cecil, just to name a few. PEGASYS, DOES elevate ALT's in SOME patients. What I was told, is 15-20% of patients undergoing combo tx, will NEVER obtain "normal" ALT's, until the discontinuation of tx.
My ALT's at the end of tx, where in the upper 60's. One month post tx, 19..
The different theories I got from the various Dr's was plan an simple. One possible explanation was inflamation caused by the Peg itself, as it is metabolized primarily by the liver. Second explanation, was that it might possibliy be the destruction of fibrosis, and the regeneration of NEW liver cells. Third, was fatty diet.. From my research, it can also suggest an auto immune reaction, or possibly a toxicity to the meds themselves.
I know it's hard to sit comfortably, as I was in your same shoes a few months back. But ask your Doc to test for Autoimmune..
Are you using Roche?
There is a reference in the patient information leaflet to elevated enzymes as a dose limiting toxcity.
Suggest your doctor speaks direct to Roche.
Sorry to underline your concern,hope you don't have to rdeuce.Guy at local support group has same problem-his treatment continues.
Hi Wasabi -
Always nice to see your name pop up. I can't tell you much, but here's my experience. My ALT/AST normalized (high 20's from 100), then headed back up to the upper 40's where they stay. Doc says it's probably inflamation caused by the meds. There you have it, FWIW.
hey,i liked that metaphor-esp shoveling the hgb -i sure hope that's the case for all of us!...i was 'medicating' w/ the herb ,never seemed to effect my levels-sure does improve my:appetite,headaches& state of mind...Lately i backed off considerably,just too much head medicine altogethr..But i truly believe weed is probably the least bad of the bunch-Good Luck
The AST and ALT can go up and down just by the food you eat,etc. so I'm told. My HGB is 8.7 and they just increased the procrit so I'm hoping it starts to kick in. I was told with the thal not to take iron pills because it builds up in the liver. Did you check with the Dr. on that? All the things you mentioned that you take, can also cause ups and downs.
Hope this helps,
Beagle
Wow, you've got a good memory. Thanks for asking.
Finally got my hgb results. I seem to be holding steady at 9.0 (yay!) at 600 riba. So starting tomorrow, I'm going to alternate between 800 and 600 each day. I'm currently still on 80,000 units of procrit weekly.
The good news is that I'm still testing negative on both the qualitative and quantitative PCR tests, which bodes well. I hope it stays that way.
Trying to be happy about it. For some reason, feel like warmed over poop today. <G> Maybe it's Tuesday-after-a-three-day-weekend syndrome. Our family owns a bar/restaurant though, and it was really busy this weekend. So maybe I'm feeling the effects of that.
How have you been feeling? Is the procrit working out for you? Hang in there. I had dropped down to 7.6 at one point. I think it's just a matter of figuring out the balance between the dosage of riba and procrit. It's like they're fighting over RBCs inside or something. Procrit's shoveling them out of your marrow, casting them like lifeboats into the bloodstream, and riba's sitting on the shoreline, scuttling the poor little floaters with BB guns. <G> I'm tired. Terrible, terrible metaphors escape when I'm tired.
Hey, thanks a lot for the link. I'm wondering if perhaps this is the problem, especially considering I'm on shot #53 or #54. I'll forward this information to my doctor. Thankfully, I'm nearing the end. Big sigh of relief.
Thanks again!
Have not seen you here in awhile, we were wondering what happened. If I remember right don't you have thalassemia anemia, which is what I have? Glad to see you back.
Beagle
http://www.fda.gov/cder/foi/label/2002/pegihof101602LB.htm
p.s-It's on the net.