Treatment side effects poll

[Pancho and Lefty]

I tried to list the thirteen sides listed on drug company literature. Couldn't figure out how to do it. By all means play along if you feel like it. A couple of us are wondering where the 20% of people who have no sides are located.  I've just cast the first vote for 'moderate.'

Thanks,

Max

[DougV]

I put moderate only due to blood counts and having to stop tx the second time due to same.

On a how did I feel scale, I would have said mild.

Doug

[negative1]

Well, you know I was the one that checked inhumane torture due to the mental aspects......

Earl

[Hank's mom]

Hi - I popped in earlier and added to the survey - severe - but forgot to see if I was able to leave a reply, duh.
I put severe because I was so anemic I couldn't do diddly - just ask him. But, really it was when I was doing the infergen/riba that I was in trouble - I'd get up in the morning - go to take my shot at 10 after 15 minutes of talking myself into doing it, eat something so my tummy didn't collapse, of course drink some water, then crawl back in bed. I have taken a couple of good beatings - kicked in ribs, been choked, nose busted, etc. - it stunk getting it, after it for a couple of days and then I got back on my feet - done! Fergie was a daily beating for me, one after another but daily beatings - when I was taken off it and found it didn't do diddly he's really suffering - it was the TKO of the whole thing.

Besides - my severe may be someone else's severe and vice versa.

Susie

[MissyMouse]

I put moderate 'cause I refuse to let anything kick my arse. 

Mouse

[Mongo]

Moderate.

I picked moderate because I think the ebbs & flows were more or less manageable. 


Now, if you want to do a "Post Treatment" poll...


 


Goodnight, all,


Kerry

[Kira]

I think having to be on pain meds, and antibiotics for most of the time, and daily runs, and eventually daily retching all add up to severe, so that's what I put. Plus having to end early due to not even keeping water down. Yuck. But it worked!!  So now I can't complain. (yeah, I probably can...)

[willy]

I've not treated and have no feedback......

except........

I think that this is a good idea.

I wonder if some way of quantifying the severity might be a good idea so that people are all on the same page with their responses.

I think the ability to POLL is a great feature here and I think it could be used to provide a database on all kinds of information about TX, age and progression, doctor ratings, post TX side effects, use of alternatives and (both good or bad) results.  (likely each would be a seperate poll)  I've even wondered if people who use bulletin boards have a higher chance of attaining an SVR. 

Anyway.... good idea and thanks for adding the poll.

Willy

[Lee]

Hello,

I voted for moderate...but as Kerry expressed...there are highs and lows....have had overall managable sides...but on bad days, and a few bad weeks little was managagable......short of deep prayer and asking for strength, for I know that it will pass and I hold on to the "better" days that will and do come.  I am thankful for those days and have truly come to appreciate things that I so took for granted in the past....I have been blessed...and know that all of this happens for a reason..though often we never truly know the reasons.

To all those out there dealing with the same things, all I can offer is positive thoughts and to remember always to remain hopeful...even through the rough days...for the sun does appear....and always will.

Blessings and deep gratitude to all for the part they have played in helping me on my journey,

Lee

[Pancho and Lefty]

Willy,

Were it possible, I would have designed this exactly as it appears on the drug company info sheet with 13 main categories and 40 subcategories. The respondent would have simply checked if he/she had experienced the side effect at any time during treatment. One either experienced a side effect or not.

This is funny. they say:     Mood alteration     5%
                                      Anorexia              24%
    then they say             Weight Decrease 10% 

I guess the anorexics who didn't lose weight sat down beside a bucket of lard with a spoon every few days. 

The opinions expressed here aren't really any more absurd than the stuff published by drug company sponsored research every day.

I think I have the knowledge to design a meaningful instrument that would generate some valid data. I don't have the techno skill to make it work with forum software.     

Ya mon, help me out here and we'll have some real fun.


Cheers
 

[negative1]

After reading Kerry's post, I would like to clarify the reason I checked inhumane....

The sides DURING tx were moderate. I was able to function at my job and was only fatigued. It would take some time to do things that normally would not have taken so long  and needed more concentration due to brain fog.

But, near the end of tx and post was when it got terrible. The mental sides killed me for a long time.

Earl

[Pancho and Lefty]

Thanks Earl,

I posted concerns about the head trip before I ever popped the first riba.

Would like to clarify my 'moderate' rating. I did 24 wk tx. About 5th wk bottomed out physically. By wk 10-12 things reached a plateau. Never got too close to needing any rescue drug. Never had diaharrea, cough, stomach problems, rash, etc. Only stopped riding a mountain bike from about wk 5 to 10. I have had energy for physical exercise of some sort throughout.

Have had mood changes fatigue, and some interesting visual effects. Need ambien to get a good night's sleep.

In my mind. . . all the above taken together indicate 'MODERATE'

If I get really squirrelly post tx, I'll change my vote to 'gonzo abusive'   

cheers

This is supposed to be set so people can change their votes. If I develop RA, depression, FM, OA,  or anything else as a result of tx. . . whether it happened during or post. . . it is most certainly a side effect of treatment.

[nialla]

i replied moderate but at times they were more severe and
other times mild ... it wasn't the same the whole time
but it pretty much sucked all the way and i'm glad it's over!

*nialla

[Hank's mom]

I think the thing is how well you do with pain and discomfort in general - I stink at some of it and breeze through the rest. It is all relative in those ways - everything is the best! or the worst! until the next best and worst and measuring it is hard.

Susie

[fenderblaster]

  I would have put "inhumane torture" because I was trying to tell someone recently what Tx is like.   I said "if you could feel like I feel right now you'd never believe anyone could be this cruel to somebody that hadn't even made them mad.  Post Tx really hasn't lightened up yet.  Maybe mentally, but I still have some fairly serious depression going on.  I have had a few moments of clarity (I think) one of which is Dr. Mengele is alive and well and prescribing for HepC.   As I write this I feel like an electric current is pulsing through me and I feel every sound I hear.  Anybody else feel the electric thing?  I'm wound up so tight I may possibly jump right out of my skin.  I went five days and slept probably two hours at ten minutes per sleep session.   So mine is the one under inhumane.  I forgot what it was. 
    Hey Chris, Sincere congrats on that degree.  Mine is a Phd...... in stupid.