Kalio2, please go back under the pile of dog poop you crawled out from under, and for everyone else, please ignore this F----.
My experience with Protein Pump Inhibitor's (PPI's_ is limited to Prevacid, Aciphex and Nexium
I only took Prevacid for a short period pre-tx so hard to compare with the PPI's taken during tx. Lots of sides with Aciphex but this was very early in tx when I was anemic, nauceous and pretty much out of it anyway. Nexium has worked the best for me.
That said, I think it's sometimes difficult to attribute this side or that to a particular drug when you're on multiple drugs. In your case, since Prilosec seemed to work, you might take some time off and try it again to see if the symptons return. Alternatively, try Nexium again. Did you take your Nexium an hour before meals? Some say this is important with this particular PPI. Fortunately, there are many PPI's, so if one doesn't work or has certain sides, there's always another to try.
Regarding Procrit -- again hard to put my finger on the sides since I'm on so many drugs. However, the times I took Procrit on days different from my Peg shot, I did notice a difference, albeit subtle. I think it also negatively affected the reflux.
I also noticed a rise in blood pressure and it seemed to coincide when I upped the Procrit dose. And sure enough hypertension is listed among Procrit's side effects: http://www.healthscout.com/rxdetail/1/104/2/main.html
No free lunch with these drugs.
Let us know if if you find something that works without too many sides.
Regarding blood pressure and Procrit, I think you are right. I had my BP taken the day after the Procrit shot and it was 158/86 - never been that high before. Doc told me to check it at home for awhile. Just took it at home and it was 124/74 -4 days after shot. We do need to be careful that we don't self medicate on these heavy duty drugs, but listen to our doctors.
I ended up going on a Blood Pressure med, Cozaar, but still a good trade off since I don't think I could maintain my riba dose without Procrit. Hopefully, when treatment is over I can get off the BP med. Home BP monitoring is a good idea when you're on these heavy drugs, especially if you have classical risk factors including family history of hypertension. As far as "listening to our doctors" I have to agree in principle but I'd amend it to "working with our doctors".
Personally, I've found it important to independently research, get second opinions, and often question major medical decisions. The anecdotal stories you hear in this forum should give anyone pause about blindly listening to their doctor. At the same time, there is so much misinformation on medical internet forums that following someone's advice here without independent research/verification is folly.
Hey girl! you are so right about the changing knowledge. I just rebought Dr Melissa Palmer's 'Hepatitis and Liver disease' and in it she talks of all the advances in hep c since 2000. Cirrohsis is reversible and livable, svr rates are up, etc.
We are the ongoing experiment and many of the conclusions we reached, the scientific community is just recognizing.
And as to Prilosec OT-it says on the commercials not to take w/liver damage and hep c is certainly liver damage. Many of the drugs-antihistimines, etcc will raise the blood pressue.
Regarding BP, actually it's the highest first thing in the morning when you get up.
Hmmm.... I guess we're all different. My experience was that mine was consistently low when I first awakened and higher in the afternoon. The nurse confirmed that was her experience too. <a href="http://www.mayoclinic.com/health/blood-pressure/AN00391">This artcle</a> seems to agree. Like you always say, there lot's of info out there, we each have to find what works for us!
You know it's odd...my blood pressure has gone DOWN since I start on the epogen. The only perfect thing about me has been my blood pressure and last time it was like 90/60 and has been in that range for a while.
Probably just a coincedence though.
Jim you are almost done. I can't believe it. If anybody deserves SVR you sure do I can't remember anybody working harder to get there. You have more determination and drive than any man I've ever met. In the real world you should be the CEO of a start up company and if you ever DO please let me know I'd like to invest.
I was on Aciphex from weeeks 2-15. Stopped it a week ago, and I'm better off without it. They put me on it mostly for nausea, and I think just for good measure. While on it I burped up gassy acidy stuff; it seemed to cause the very problems it was intended to treat.
I had high BP for a while, but it's been OK for a year or so. I was on some med for 6 mos. I used the home arm cuff deal without the stethescope. That worked pretty well, though I would take a couple readings and average them. I'd buy that cuff again if I needed one. BP is usually lowest first thing in the AM, and highest late afternoon.
I first noticed high blood pressure readings upon awakening when I got my home unit. Alarmed at the reading, I called the device company to see if I was using it correctly. They told me that very high readings were normal upon awakening.
Maybe we're just talking semantics here. I was referring to high readings *upon awakening* not morning versus afternoon and the cardiac literature supports this as early morning is the time most heart attacks/strokes occur. The Italian Study supports this...WHOOPS...wrong study but try these :)
Regarding your bp and epo, that's interesting but women seem to break the mold in most things :)Thanks for the nice words and of course I'm looking for SVR but just to be off treatment will do if push comes to shove. You do what you gotta do and then it's up to something else. :)
Glad you're feeling better without the Aciphex. Sounded like it may have benefited you early in tx when nausea can be rampant but wasn't necessary later since you didn't seem to have classical GERD or reflux. Regarding BP, actually it's the highest first thing in the morning when you get up. Not coincidentally, that's also when your heart attack risk is the greatest.
Yes, things do slow down as you approach end, perhaps some sort of Interferon warped Einsteinian time/space phenomena. The other thing -- with me at least -- is integrating "real world" stuff (work/thoughts/relationships) back into my life. I literally had to block all that out during most of treatment. And yes again about misinformation on these boards. Unless you're willing to independently check things out, you're better off following your doctor's advice -- however imperfect -- than that what you get on forums like this which tend to be riddled with too much personal bias and personal agendas.
I have found that the knowledge I've gainned in here has helped me to talk things through with my doctor so VERY much! And for that I am so grateful to some of the people on this forum.
I would NOT consider treating via the internet though and hope that you all are right and nobody would consider using just info on the net and NOT instead using their doctors wisdom.
I've found that my doctor is generally open minded and when he isn't up on some current info or treatment approach if I can bring it to him and speak knowledgably...he is willing to work with me.
THAT has been the biggest blessing of all. Besides the constant support and encouragement in here.
Hey Don,,,So glad to see you here today. How ya feeling these days? I hope better as I know the tx was rough at times for you. Are you planning on tx again after a much needed break? I wish you the best and always look forward to seeing you at Medhelp! Best Wishes for 2006!
Sorry to come over here but post closed above.
I was wondering if you don't like the way the Procrit makes you feel and had to cut back...why not cut back the Riba a bit and try and kill off the anemia? NOT trying to sound snooty just wondering if you are on 1600 of those dreadful suckers...wouldn't cutting that down help?
Anything to ME was better than the anemia. But I am lucky I don't notice feeling anything from the Epogen at all. It really did the trick for me and now I am down to only once a week.
What worked best for me was Aciphex. Some ins. companies, like mine, no longer cover it. I'm on my way to pick up Nexxium and larger syringes for the mega dose of Infergen I'm taking. Nasty stuff at 24mcg I'm taking. Good luck...
Are you sure you'll have to use a larger needle too? I have 2 different sized needles...the one that came with the syringe is a 25 g...I use it to draw the meds then bought a 30 g needle to inject...I just simply switch 'em...works fine. Initially they just sent me 25 g and that was too damn big to inject...did that a couple of times. :)
Just got back from the pharmcist who gave me two syringes to try out, that have big one inch or longer needles. I can't use them at one a day for possibly 48 weeks. I called and told him. He will try to order smaller needles and larger syringes.
YIKES...hopefully he can find you something smaller...I couldn't even do the 25 g... :)
Well...your name IS Magnum!
thanks for the info. just got new rx today..prevacid. good luck with the syringes...you are my hero. AND YOU, ALSO, Susan!
Don't forget 24 tomarrow! i can't wait. just finished watching end of last season.
I hope you find this response and it finds you well. The post above filled up with nonsense and I apoligize that you had to deal with that on your first post.
The interferon has an effect on your white blood cells. The most important part of your white blood counts you want to monitor is you absolute neutrophils. Some blood test will list them out as absolute neutrophils, if that's the case most doctors aren't concerned until around 500. If it is listed out as a % neutrophils you need to multiply your wbc x %neut. x 10. You will find that many of your counts will be out of range from time to time, as just out of range usually doesn't mean a whole lot. There are drugs that can boost your white blood counts and they work rather quickly, that's usually preferably to lowering or stopping your pegasys dose.
I finally had to succumb to ambien in about week 18 or so of tx. Sad to say I use it most nights, but I really wasn't much of a sleeper even before tx. Wish you well on your rollercoaster ride. Peace
Not sure if you'll find this or not. Tx is very stressful on your body, it is usually not recommended for any with heart problems. So before tx I would get to the bottom of these palpitations, as tx can make things worse. Even procrit, a drug that some have to use during tx has now been associated with strokes. Tx is also known to give some people problems with their thyroid, some have had to continue with thyroid meds for the rest of their life after tx. If your thyroid is already stressed, tx will make it worse. Before tx your doc should check your thyroid and keep it monitored through out tx. Be well ... Peace
I use 27 guage 1/2" inch needles for my shots. A 1" needle is often used for intramuscular injections and you don't want to do that. I also use a 3ml barrel which affords plenty of room to draw in the meds, get rid of any bubbles, etc, and also is easier to handle than some of the smaller insulin barrels.
Tell your druggist you want the B-D Luer-Lok system. Needles and barrels are interchangeable -- they screw on and off in a second. That way you can use the the larger 3ml barrel with smaller needles. 1/2 " should be the correct length. I think 27 gauge is standard but you could experiment with a smaller 29 gauge as well.
If you're penetrating rubber stoppers as with Procrit (make sure to alcolhol wipe them down) the needles can dull. What some people do then is draw the meds out with one needle and then swap to a new needle while the barrel is full. For this reason, ask your pharmacist for twice the amount of needles per injection.
All the best.
Regarding changing needles and needle size -- a lot of folks use a larger needle to draw the meds out but then switch to a smaller size and guage for the actual shot.
Pleezzz spare us your self pity. How many sick people that came here have you and your sidekicks ran off? You think its a badge of honor being booted from here so many times. And deary you guys are the king of games. Your still playing them and if people would bother reading yours and others posts they would know it to. And since your keeping count, i only posted one time saturday.
Y'all crack me up, I completely agree with you on the needles thing, I'm thinking on my first shot, till I get used to it, maybe I could do it blind folded????
I do #28 tonite, am dreading it; will never get use to it and will be so glad when it's over. Peace
I too am glad you decided to post. You chose to jump in the water during a period of rough waves, but that can be fun at times. The counts can go up after going down, RBC or WBC, it is when it consistently decreases that docs seem to worry. My white count went down below norm, twice in 18 months, and went back up to the low normal again. The red count needed procrit, but TG it worked to keep the hgb within normal range. You are quite a trooper, tx with kids at home and in school!!
you take the gold medal!
You know I never thought I'd do okay with the needles, hated em, only did IV once in my life. Thought I was getting the redipen til I got home and opened the prescription. Was so proud of myself and it went so well the first shot night, I wanted to do it again., right away. Like -that's it? Weird. I still go through a whole ritual laying everything out, reading the instrucytions each time, try an do everything the same so I don't screew up. One night about shot 13- I had just barely gone into the skin w/the needle, saw a little blood come up around the injection site and had to make a decision. Remembered something someone had said here, took the needle out moved over and inch or so and went in again. Pulled back on the plunger, whew-no blood. Finished up. Don't know if it was the right thing to do, but realized I'd gotten a lot more comfortable with the process.
"till I get used to it, maybe I could do it blind folded????"
I'd steer well clear of the more sensitive areas were I planning on fling blind!
Although check with the sixteemny/o, but I'm hearing piercings are in down there.......