Just back from Gastro regarding my progress

[dperry10]

Well..  by the time I saw the Doc, he already knew that I was already on my 3rd shot of procrit.  Last lab (cbc) was done on the 9th, and HGB was 10.   the week before was 10.2, and 10.6 the week before that, and had dropped from 15.7 which was done on 12/29.  so was a drastic drop, over 5 pts .  So I guess he felt better that I did go to the Hemo to get the procrit, even though he knew nothing of it.

When I asked for req for the PCR in 3 wks.. he says 4 wks.. March 22, will be 3 months.   I guess 12 wks does not equal 3 months on his calender.  I could not talk him into it, says what benefit would it be to know where it is now.. the 3 mos is the marker, when we decide if you continue for 48 or stop.  

So I guess I will have to trust him.  I told him I belonged to a support group, and that I was going by what others suggested as the course of action, as compared to old school treatment like I did 14 years ago.   But he would not budge.   He is really nice and I like him, but I just hope he has my best interest in mind.

I asked what happens after 12 if not a 2 log drop, then what do I do,, he says we will wait and see if that happens and go from there.  

continue on next thread

[dperry10]

I showed him the Riba rash, and he told me to try the Calendula that I just got, if not working he will try something else for me.  I have a patch on my cheek today, that actually hurts, feels like my cheek is bruised, must have scratched or rubbed it in my sleep.  and my backside feels like an alligator skin now, ..  He says could be Thyroid, doing a TSH test tomorrow with my labs.  

Wish me luck that the next month, gets me where I need to be.  It appears I missed quite a few doses of my riba.  I am not sure how that happened but I guess it does, so I will jsut add an extra pill in there every day to get caught up.  I know its gonna make me feel worse.. but gotta do what ya gotta do.   Unless someone things thats not a good idea ??

[FlGuy]

What makes you think you missed doses of riba.  Is it because you think you have more pills in your possession than you should, or do you 'know' that you missed some riba?

[rosebud57]

hi,
i'm wondering how you concluded that you missed a lot of riba doses. is it because you have extra pills left? do you use a weekly med box to dispense? they sure help. even when i use one i still have to occassionally double check that i remembered (usually i've forgotten i've already taken). sometimes they give extra pills when they dispense.
rose

[Forseegood]

I just hope that you feel better soon, and that they can get to the bottom of it to your benefit...

[dperry10]

Yes I had more pills left in the 2nd bottle, after just opening the next box of pegetron.     I had like 12 pills extra in the bottle, when I should have only had 3 left after finishing the last box of 4 pegetron.(shot 8)

When I started the next box,, ( shot 9 ) I should have had 1 dose of Riba left., as dr had me take my shot , then the first riba the next morning.  

Before starting the next batch of Riba that came with that pegetron.  

I did get a weekly ,, day nite pill thing, but it got to be hard to even do that taste a couple of weeks ago, and I have just been relying on memory to take 3 in the morning and 3 at nite.. but I guess I forgot my 2nd dose a few time.  

I will go fill up the reminder tonite

[FlGuy]

I should explain where I'm going with my last comment. First, I started my med delivery schedule (it's automatic) several weeks before I started tx.  So, I should always have a lot of that hideous riba on hand - and I do.  But, it finally dawned on me that I get refills every 28 day, but I get a 30-day supply.  I do not miss riba doses.  What this means is that, over the course of tx, I end up with an ever-increasing supply of riba that God-forbid, I'll never have to take.  Your refill process may be different. But if your not sure if you missed riba - maybe you didn't.  The pill box thing is a no-brainer, you must ues it.  Otherwise you;ll never know.  Good luck. And, if you intend to do some 'riba catch up' be careful and talk to the doc about it first.  That stuff is fire, without the flame.  

[dperry10]

Thank you, I just got off the phone with my company nurse, Health services coordinator.. to find out what to do about starting short term.  

Easy.. call out 5 days, and on the 6th, its short term disability... I get paid 90 % . for up to 12 months.. whoo hooooo.. I have to use my sick days , but when I come back, I get my sick days back,  which I only have 4 left of.. I used 2 already.   so will have to go a day without pay.

I get mine delivered a month at a time too, and always have extra coming, before I am half done with the box.  

but I get 2 bottles of pills with each 4 shots.. so was going by how many pills were left when I took that last shot in the box.. had more than 3.. which is what I should have.

Hope I am not confusing anyone, cuz I am confusing myself.    LOL  my arms are heavy today, and its hard to type, brain going faster than fingers..

[l-horn]

I get 3 bottles of 210 every 4 week. I take 7 per day. Every 4 week cycle I have 14 extra riba. I'm in week 26 so I have 91 extra riba that I haven't done. Having extra riba doesn't necessarily mean you missed doses.

With that said, I missed 4 doses last month. When I told my doc he asked me if I had missed them in a row, or dispersed throughout the month. I had missed a few of the evening doses 'here and there'. He said it wasn't uncommon and to not worry. I missed 4 doses of 3 in a month so that's 12 pills out of 196, which is about 6% of the dose missed for the month and less than 1% since I started treatment. If you take 7 pills per day for 48 weeks you could miss 17 doses and still be 99% compliant. You could miss 33 doses and be 96% compliant. But, you miss 33 in a row that's another story.

Bottom line, if the treatment required a 99% compliance rate for success I'm not sure the FDA would approve it to be self-administered.

[FlGuy]

1400 mg riba is an odd amount. Not odd, in the even-odd sense, but not typical.  Are you a larger Longhorn, or were you adjusted up to 1400?  I know that things are bigger in Tx, but riba dosing too?

[l-horn]

I take 7 200mg ( 1400mg ) per day. I'm 6' 03" and WAS 270 when I started. I'm down to 253 my last doc visit. I thought I read on Scherings site that anyone over 180 lbs got the max riba dose ? Is 1400mg unusual ?

[FlGuy]

Not unusual since riba is weight-based.  Just seems, as I read here, that except for folks who might be doing some off-label dosing, most are in the 1000-1200.  I guess what I was asking is if you were doing 'off label' dising, but it appears that that dose is suitable. Hook 'em horns!

[l-horn]

Well I wouldn't exactly call it 'suitable' but it's what they gave me. I know this, when I missed those doses I sure did feel a hell of a lot better.

You guys must be in hog heaven down there in FLA, that is, unless you're a noles or a cane fan. National championship in college basketball then follow it with an NC in college football. That's gotta be pretty nice.

We of course, had to replace superman and the only thing we had in the wings was 'Malcom in the Middle' but he did pretty good for a freshman. Asking a kid out of highschool to beat #1 ranked Ohio State in the second game of his college career was probably asking a bit too much.

[ladybug52]

My first dr would not do a 4 week pcr so I went to a new dr. Before I went to the new dr, I called my pcp and requested a lab slip for a heptimax (thank you thank you JmJM for your advice) Your dr let your hgb drop so low without rescue drugs, isn't there another dr you can go to to get a PCR? I know this was a hotly debated issue initially when Sfbaygirl and I were telling you to go to another dr. HCA jumped in and  chastised SFBgirl for trying to ruin your dr. patient relationship. Now, you can see that we were right to urge you to get help for the dropping hgb. He should be embarrassed that he let you get so anemic! Sorry I'm such a buttinsky, but I'm really hoping you can get a dr who listens better.

[dperry10]

Well I am approved for the Short term disability, so should have plenty of time on my hands to find another doctor.. Just hope its not to long of a drive.  I do not feel well enough to drive far these days.   5 miles to work and home, and doctor is inbetween home and work.

[ladybug52]

I understand your dilemna, it's hard to pursue anything when you feel like ****. And I'm not trying to sound bossy and know it all, and I know I do, I just want you to get the best care possible. The dr. wouldn't listen when you're hgb was dropping, and he won't listen when you request a pcr to see if you are responding to tx. I would think you are responding well since your bloodwork dropped, but it's always nice to have the blood work to prove it.
Good luck,
Bug
P.S. Congratulations on getting the disability straightened out! One fight at a time right?

[dperry10]

Yes I did not realize how easy it was for me to just call out sick ??  thats all I have to do, and of course they give you like 2 wks to get the doctor to fill out the paperwork, and he did not seem to have a problem with that.. I just do not know what I will do with myself while I am off.

[nygirl7]

DPerry said: the 3 mos is the marker, when we decide if you continue for 48 or stop.



Can I just say again how much I HATE uneducated doctors that aren't keeping up with the latest studies and how they might affect us? HATE IT.  Doc...the textbooks are OLD - read some journals and study results for your money why don't you?

I had printed out the studies and showed them to my doctor so I could prove my point.  It worked.

Find a new doctor who will listen to you.  Immediately. A doctor who just goes cookie cutter "it says in the HepC text book from 2003"....needs to GO immediately.

New information that helps us comes out ALL OF THE TIME.  Most doctors are NOT uptodate on any of the recent findings. That is why I print and show to mine.  dHe realized after a little while how IMPORTANT It was to keep up and now is doing his own reserach all the time.

I'm sort of proud about that you know?  It WILL help the next patient that comes along - save them some aggravation.

When I had my six point drop in ten days and was coughing coughing weak etc.  he tried to send me for a chest xray. Oh boy. I showed him my CBC stating from 15+ top 9 in just over a week. He never thought of it?

----

Make SURE you have a regular TSH test done for your thyroid. The interferon killed my thyroid. First I went extremely HYPER (TSH 0.0) then extremely hypo. so at first I lost a TON of weight and got emaciated - had all the classic thyroid problem signs and symptoms but they MIRROR the signs for tx sides...so without the test you will never know.

Good luck!