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triple therapy-- side effects of last week - norman under circumstances?
anyone else having similar situation? at 6& 1/2 weeks dosage for riba dropped from 1000 to 600. Felt better for a couple days then it "hit the fan". Am taking neupogen for white blood cells & ok. Red blood cells down to 9.4 (tho sure it is still dropping) Exhausted, brain fog, hair loss kicking in, soreness by liver a couple times, have about 1 hour of energy then many naps. I am fine with all this as long as I can finish last 3 weeks. Doc does not want to give me additional shot for red blood cells, but at what point need I worry.? Am having blood checked Mon. & will see what next step is but would like re-assurance that this is perfectly "normal"............thanks for any input................msmagnolia
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Sorry your having a hard time, but most of that is to be expected.These next few weeks will be the point it will probably be the hardest , so stay on top of it.Your doc sounds like he's following protocal for your dosing, if you drop below 8.5 hgb , he'll probably stop the riba temporarily.You should stabilize either now or when he stops it.Just keep in mind they can always give you a transfusion if it gets worse.My question to Doc would be why not.If he feels its a health issue and a gamble then that's one thing, if not then why not give you a shot.I had similar problems at wk 7 and dropped into High 8's then got shot each week for next 4 wks until it came up to 10.After wk 12 I started to drop agin very quickly and then reduced riba 200 mg when I got to 8.9, no more shots but it did come back to 10.3 in next 4 wks.But i'm sure the shots I had in the past helped that increase. Now back to 1200mg and feeling for the first time like I got some energy back and my thinking has cleared some in wk 17 still have sx like rash ,headache,fever,but you get used to anything after awhile I guess.Hang in there it really does get better- good luck --Toby
Hi Toby.. this all really becomes a "balancing" act, I I will do whatever I must. Doc. is reluctant to put me on Procrit........I think the "fog" & unbelievable bloating is a real "pia" but am lactose intolerant so will change up diet for sure. Good luck to you...hope you do well
hey Billy...thank you so much for input. This website is such a blessing. I was und at week 4 but only the last week really raised concerns. Am getting weekly bloodwork but have heard some not fun stuff regarding procrit. Would rather have blood transfusion. Guess it is dc's call. At least I will find out tomorrow. Hope we all do well on this difficult journey....................Sharon
i hear ya.....i big mistake i made was at week 3 my np called me to ask how i was feeling....i answered the phone and said GREAT!!! being sarcastic...i felt so bad...and because i was so out of it when she called i really didn't say anything else...when i went into the doctors office and couldn't stand up...had to lay down on that bed thing while she did the exam...she said i thought you were doing great...i told her sorry i was sarcastic...i'm sure they would have had me on procrit earlier..my big mistake...i couldn't talk real good at that exam but i did ask her how everyone was doing on the new tx and if i was normal....she said out of hundreds of exams i was the worse..so that was the first time i stopped the riba for 5 days....but always did the incivek and full dose interferon...so yes be forceful...i wasn't use to this doctor stuff....thought they could see everything....they need your help!!!...billy
One more thing at this stage you should be having your cbc done weekly as you can drop more than a point in a week.Be proactive, stay on top of things and be a little forceful if need be.This is all about you and sometimes you have to remind the doc of that.
ask your doc when he/she will bring in rescue drugs...i would start procrit soon...it can take a couple weeks to work..i have to wonder if your doing weekly cbcs....also what your blood worklooks like..vl....4 week and so on.how are your alts??be ready to sit tight and get through the incivek...it works great for most but can get real tough the last month or so...take it easy as your hgb drops...that can raise your pulse to get try and compensate for the lack of oxygen....my pulse went from the 40s up into high 70s low 80s...now at 18 weeks its better in the 60s /70s most of the time....you sound normal to me...just get that cbc asap...and talk with your doctor..good luck....billy
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