sides

[rsterling]

I'm just wondering if anyone else has experienced a pounding or like heartbeat in their ears or head.  It's not hurtful, just like my heartbeat, but it's beginning to bother a lot because it's constant.  Also, I'm going to to doc on the 10th, and if anyone would, I'd like info again on low platelets.  I can't recall but someone had posted before about their doc considering 10000 to be low instead of 30000.

Thanks Robin

[TnHepGuy_]

I copied your question here and posted it to this thread - <a href="http://www.medhelp.org/perl6/hepatitis/messages/C38032-3.html">Q: News Stories, Other Posts

[cheezer]

my doctor is not giveing me any info I am haveing bad side effects cant work what do
I need to know for help

[giddyup]

Yes! Doc said to watch out. She gives me enough for 60% of the time. Sorry Your mom went through that experience.

Peace

[cuteus]

I have read that pegintron is better for geno 1, slightly better than pegasys and I still chose pegasys.
  Geno 2 has the best chances anyway regardless of med chosen.
If you are in doubt about his words, do a web search for genotype 2 and read the studies out there.
gl

[britgirl]

If I understand correctly, you are taking 6 different kinds of medication apart from the one for HepC. Isn't that an awful lot? All drugs are processed throught the liver and must make it work reaaly hard just getting all this stuff out of your system. Is there really no alternative?

[whoaisme]

Hi! Here's what I can tell you about my husband's experience with his daily infergen use. As he stated earlier, he was on 1200 riba which had been reduced,low rbc, the study's protocal (dose reduction) and slowly built back to 1000 riba. The major difference I think that he has experienced is that with the pegysus/riba and the daily is that with the peg, the sides were a roller coaster and you never knew how you were going to feel and when, the sides changed and waxed and waned. The daily infergen is constant, the sides don't change. They are there every day and every day he feels like ****. He has practically stopped working, and barely leaves the house. Before he began the doctor said it wouldn't be like Peg and that this would be a "whooper". He was randomized into the highest dose, which was good because of his size (6'2"/ 245.) He takes a lot of different meds for his sides and often feels that he can't do it anymore. However he too is at stage 4 and feels he has no choice but to go on (btw he is 40 and probably had Hepc since he is 8). He has been on daily infergen since August and the doctor feels he will be on it through the 48 weeks. He has had a two log drop in his vl but has not cleared yet, that we know of, next test will be in Feb. Good luck to you and keep in touch. Su

[giddyup]

I'm on wk 19 of infergen.  I still drive but I've decided not to use power tools especially the chain saw.

As far as reducing dose I understand how you feel. I take it one day at a time. My doc offered to reduce the infergen but I told him I think I can make it. My side meds help and include Vicodin,protonix,compazine,Ambian and Ativan.These drugs get me through one day at a time.

                                     Good luck

[TnHepGuy_]

I've experienced both the 'heartbeat-in-the-ear' routine as well as a constant loud ringing (tinnitus) since early on in my current tx (I'm on week 48 now). Back in 1992-93 when I was on mono interferon, I experienced the ringing but not the heartbeat part. The tinnitus is much worse the time around. After the mono tx, the ringing cleared mostly - but not fully - for me.


TnHepGuy

[giddyup]

oh yeah and lexapro my antidepressent helps I've been leaning on it .When I wake up I feel depressed lately so I take the lex first thing.

[rsterling]

Thanks for the feedback. Just did blood work for this month would really appreciate feedback on last's months results.  I am geno1-31/48, (the doc didn't have a problem with the following results.  He had already reduced me to 135ml of peysus/1000 riba):

out of range:
WBC 2.7 L
RBC 3.19L
HEMOGLOBIN 10.9L
HEMATOCRIT 33.6L
MCV  105 H
PLATELET    60 L
SLIGHT ANISOCYTOSIS
SLIGHT MACROCYTOSIS
FEW DACROBYTES (TEARDROP CELLS)
SLIGHT OVALOCYTOSIS
PLATELETS APPEAR MODERATELY REDUCED AS ESTIMATED ON SMEAR.

BETA HCG QUAL, SERUM
   TOTAL HCG, QL.          NEGATIVE              NEGATIVE
Again, the doc was fine with the above.  In a couple of days he should have today's results.
Thanks, Robin

[woodbeegood]

i have had that heartpounding thing off & on also-has not been a big problem unless it's real quiet-as far as the platelets go i think every dr has their own threshold-mine got quirky when my platelets first dropped into the 80's-convinced him to let me continue on full dose & monitor with regular cbc's-then they stabilized & stayed in the upper 70's low 80's until right at the end -just finished 48/48 & last platelet count was 68-take care

[giddyup]

I understand what your saying about the drug mix.They're all chosen for minimal liver effects.It's just while I'm on tx.The drugs really help.

[britgirl]

Do be careful with Ativan. My mother got totally dependent on them and suicidal when she tried to stop.

[Ella Mackenzie]

I had pounding too and I believe it was due to my low red blood count. My platelets went as low as 47 but I had them monitored weekly. My doc cut my dose in half and then prolonged treatment accordingly.

[cbee]

I am going to start treatment as soon as my meds arrive.  The dr I am doing tx with prefers to use Peg-Intron.  It seems the consensus from what I've read is that the sx are worse with Peg-Intron than Pegysus.  I'm a 2 and will treat for 24 weeks (hopefully). I am very concerned about sx.  The dr. will give me Pegysus if that's my choice but he feels the success rate is better with the Peg-Intron (90-95% as opposed to 80% for Pegysus for a 2).  He told me that I will feel sx at the very beginning as opposed to the Pegysus which takes a while.   Thanks to you in this forum for all the knowlege and info, I really came on strong with questions, etc.  The dr answered them all and then some.  He is a hepatologist at Cedars Sinai in Los Angeles who has treated Hep C for years and he really seems to know his stuff.  Can I get some feeback from anyone who has used Peg-Intron on the sx.  Thanks for taking the time.

-cbee

[cao]

Have other people heard the same thing re the efficacy of Peg-Intron vs. Pegasys for type 2s...I'm a type 2 treating through a major research university's hepatology department and our clinic chose Pegasys....I'd hate to think I was on a less effective drug! Yikes!

[cbee]

I think it's just that dr's experience and those were his stats - I've not heard of that success rate.  I'm so so confused about this.  I've been reading more and I still am finding Pegysus better tolerated.  I'm hoping to get some feeback here about this.  Most people seem to use Pegysus and most 2s do well so please don't be worried.

[Tess Marie]

I also had the pounding in my ears, which has finally subsided. My ears are still very sensitive. I am sure that it is all meds related. Giddyup-please tell me how you are doing on Infergen. I have been on daily infergen for 6 mths., and my Doctor is considering reducing to 3x per week, because of all the sides. I do not want to jepordize treatment in any way. I am a relapser from 2002, where I was on Peg-Inton for 48 weeks. I take 800 Riba daily. Please let me know your experiences with Infergen. My treatment plan is now 48-60 weeks. I am a 1B, Stage 4, probable cirrhosis, carried for 30 years, age 60.

[giddyup]

I had the pounding heartbeat in my head last year while on pegysus.This year I'm on infergen an d I dont expierience it. All my side meds are the same this year, but I'm on 1000 ribba instead of 1200.
When I asked my doc last Year he  said he had never seen it as a tx side. I don't know what caused it maybe a low blood count from the ribba. Anyway I lived' it came and went and besides creating worry and being a nuicence, no problem.
                                                 Best wishes

[giddyup]

I had the pounding heartbeat in my head last year while on pegysus.This year I'm on infergen an d I dont expierience it. All my side meds are the same this year, but I'm on 1000 ribba instead of 1200.
When I asked my doc last Year he  said he had never seen it as a tx side. I don't know what caused it maybe a low blood count from the ribba. Anyway I lived' it came and went and besides creating worry and being a nuicence, no problem.
                                                 Best wishes

[Xenigma]

That could be a sign of high blood pressure.
You can check your BP at the grocery store or
pharmacy for free until you get to the doc.
Interferon messes with the heart (that's why
I can't take it - I have a heart condition)
so make sure you tell the doc.
If I were you, I would call the doc and see if
he/she can see you sooner. Maybe there is a
cancellation.
Feel better
enigma