has anyone had pain

over the past few months i have been having pain and swelling from the knees down. my ankles and the top of my feet ache & swell. it started with numbness & tingling in my right calf. then the swelling & pain started. has anyone had this problem? and do you think its due to tx? thank you so much.

[NYgirl]

Anything is possible on tx - i know there are others who have had trouble with adema and retainning water. we are forced to have to drink so MUCH of it on treatment aren't we! Perhaps part of the problem is your body retainning too much or something simple like that.

Of course that doesn't help ease the pain...but I would definitely ask a doctor what's what with something that hurt me that much!

Good luck.

[jmjm530]

Bill said he heard some order "bDNA assay(s) with a sensitivity of <625 IU due to it’s extremely high rate of specificity. Other times the PCR or TMA assays are preferable for sensitivity,
-----------------
I believe Goofy's doctor orders both those tests? If so, maybe you've explained the reason. Goofy -- if those indeed are the tests you get, no rush, but when you get a chance please check which labs do them. Thanks.

[susan400]

I very well could be due to the treatment.  My doctors are having me worked up right now to make sure that I've not got nerve damage from the treatment.  I really believe that all these tests aren't going to show anything, but I'm doing them anyway.  So far, I've had the MRI-brain and an EEG.  I still have to get an EMG next week. After that, I go back for my follow-up.  I actually feel that the Procrit has caused me more problems in my entire treatment that the Infergen or Riba ever has.  I've treated numerous times and never used Procrit until this time.  I never had these problems on my other treatments and now, with having the Procrit, it shows up.  Also, I feel a lot worse on the couple of days after my Procrit.  I don't know why I react differently to Procrit than most of the people here, I can't explain it.  But then again, I almost died from Penicillin and not everybody has that reaction either.  Anything's possible.  All drugs have side effects and they vary from person to person.

Susan

[GoofyDad]

My doc generally orders RNA bDNA Quant - Bayer; RNA TMA Qual - Bayer. I choose to have them drawn at my local hospital outpatient clinic. They send them to Quest, San Juan Capistrano. Specificity isn't listed on the results. TMA comes back as Versant TMA Qual.

Susan - Thanks for the update, and the reminder that all these drugs are heavy hitters. I think we often thing of the support drugs as nothing much, but I remember talking to my doc about Neupogen, and he said, "Yeah, that's some nasty stuff".

[silverangel]

Sometimes swelling can be due to gout from treatment. Ask your MD what your uric acid level is, its one that is usually monitored while on treatment. Aside from that, keep your legs elevated while sitting to reduce swelling. P.S. Gout causes pain and swelling.

[NYgirl]

I'd bet if it can kill a thyroid like it efficiently did mine in only a few months, killing nerves and other organs ain't nothing. ;)  Seriously though these ARE EXTREMELEY powerful meds and anytime you are putting a "poison" in to attack one specific thing there is the chance that it will kill another.

That is how autoimmune diseases work unfortunately.

None of the sides surprise me and in fact when you REALLY stop and think about it, it's a miracle we make out as well as we do.  We're dayum lucky.

[Mister beagle bailey]

Can do man--LOL I remember what you did. hehehe

Lilmomma---  There are many things that can cause that smell or taste and anemia is one, it happened to me.  However, what I don't like is the swelling and the ammonia together because they both are signs of a problem with kidney.
I wouldn't wait till Monday I would try and see the dr. or nurse tomorrow. This is a holiday week end and many dr. office some times take vacations during this time because of kids being home from school.


Beagle

[fishdoc]

Hey Kalio, did you miss our list yesterday?  Can do, dyce and I , well we got blood in our eyes.......  oh, thats not what you meant?

actually, my eyes get so dry they do have areas that look about two steps beyond bloodshot.  Have you tried moisturizing drops?

[can-do-man]

Trust me, this was much much worse. And the fun that was had today i don't think will end soon.

[jmjm530]

Trust me, this was much much worse. And the fun that was had today i don't think will end soon.
------------------------------------------------

Probably not. Crazy glue has a very long half life.

[can-do-man]

I take it you read it to?

[LvdByGod]

hi, i didn't get to read your responses very closely but i couldn't see if anyone had mentioned the possibility of CRYOGLOBULEMIA or mixed cryoglobulemia. this can be associated with hep c... all you need is a simple blood test to check for it...i thought i had it, and got the blood test... here is some info on symptoms of Cyroglobulemia...

http://www.mayoclinic.org/cryoglobulinemia/symptoms.html

http://dynamics.org/cryo/HCV_cryo_refs.html

i believe there are some here who have said they have it, but at the moment thier names escape me...it is a serious condition so i pray you do not have it... your swelling could certainly could just be edema (water swelling in the legs etc) a low salt intake could help this...

both of these can be associated with cirhosis. do you know your stage/grade of liver damage from the hepatitus (hepatitis)?

[LvdByGod]

I hope you can get in to an optomologist to check on that... anything with the eyes should be looked at...

i hope all else is well with you,

sandi

[can-do-man]

says....Probably not. Crazy glue has a very long half life.


If only it was crazy glue, Still kicken dirt rounding third?

[Mister beagle bailey]

Can do man--  I sure did see it. LOL


Kalio-- About the blood in your eye---How is your blood pressure?  Just a thought, it happened to a friend of mine.

Beagle

[can-do-man]

hi lilmoma, due get that checked out. In the meantime check and make sure its toothpaste your using. I had a slight problem the other day using some wrong stuff. Im not gonna say what but just read the label. Take care lilmoma, glad to see you online.

[Algernon]

thanks for the tip for itchy scalp.  i'll try it.  otherwise, i'm going to start getting kicked out of restaurants by the public health police (given my obvious lice symptoms...).

[Mister beagle bailey]

That's something my wife would do. LOL  I wish I could be a fly on the wall at that x-mas party.

Beagle

[OnAPrettyPoison]

Can Do, there is nothing like starting a new scandal to take everyone's mind off the old one.  I know you have a devious mind, even under the influence of riba.   Better get busy!

LilMomma, please call docs office tomorrow, these meds can be serious stuff.

Mr BB,how are you???  Been out in the red cross van lately?

[Mister beagle bailey]

Pretty said: Been out in the red cross van lately?

I'm doing fine.  On the post below sfbaygirl has to many red blood cells, hey do you think.....  I guess not.:(

Will have to get the blood at the hospital.

How are you doing tonight pretty?

Beagle

[OnAPrettyPoison]

I am doing fine!  Having some work done at my house tomorrow so I have a LONG weekend.  I hope you are doing well and can hold on long enough to only need one more transfusion.  Do you miss FL yet???  It has been beautiful here.  I love this time of year and I think that by itself makes me feel better.

[strator]

Hey all, a question or two. I mentioned this past week I've been more fatigued(still okay workin though). Maybe the hgl going down(last mo was 10.9), but a few other things have changed with the sx.
1. For the past 2 weeks or more I wake up knowing I'm gonna go through the dry heaves within an hour. No nausea, starts like more of a cough and gagging that I can't seem to clear, and then dry heaves clears it but leaves me light headed.Same thing at bedtime some nights.(I haven't paid much attention to that cause it's somethin I lived with daily for the last 2 years of my drinking career. Heave and drink, heave and drink, then breakfast. Never thought I'd be spending mornings like that again.)
2. Having trouble eating, seems like when I sit down and eat I have to be very, very careful. Almost like I'm not getting air or the passageway is smaller than it used to be. I have to stop and concentrate on getting some air and then try nibbling again. Not every single meal but it's gotten a lot more consistent(1 or 2 times a day vs the occasional 1 or twice a wk at the beginning of tx. A little shorter of breath in general than before.
Does this soumd like normal tx stuff or thyroid or esophagus(sp)type of stuff. Seein the doctor Monday but just wanted to get some feedback.
Thanks, be well,
Don

[Mister beagle bailey]

Sorry I just came back on.  It's anemia your #'s must be low.  All the sxs your are talking about is low HGB.  You need your blood tested right away. Because the dry heaves means it's been going on awhile.  This is a holiday week , can you call your dr?  This is not a normal sx, you have low oxygen in your blood.
If your still on please answer me.

Beagle

[jmjm530]

Sorry you're going through all this.

I also had some coughing/gagging/dry heaving early in treatment and attributed to my worsening GERD (chronic reflux). It was explained that the type of reflux I had (Laryngopharyngeal Reflux) often acted unlike ordinary reflux in that it often isn't accompanied by hearburn. That's because laryngopharygeal reflux (LPR) occurs higher up and often effects the throat, sinuses, ears and lungs.

This might explain your throat constriction as well as your dry heaving which may be caused by refluxed gas or food getting into your lungs. Among other things, I had a hard time drinking water for much of treatment because of this. And, of course, the riba makes everything worse by making your insides dry and raw. I ended up on a 2 PPI's a day (Nexium) which gave some relief. Your shortness of breath might be more related to anemia.

Anyway, that's one possiblity and I'm sure your doctor will explore others, including running some tests and possibly even doing an endoscophy.

Given your grouping of symptons, it might be prudent to speak to your doctor on the phone tomorrow, rather than waiting till Monday.

Hope things work out soon.

-- Jim

[lilmoma]

Gosh, I hear ya!!!!!!!!!
I slowed down on the water, and it seemed like it was starting to help, but today, as the day went on, I could feel my skin just stretching as I began to bloat up!!!!!!
I have had my shoes off for over the last hour, and you can still the "fabric markings" on my feet they are so swollen, not to mention my eyes, hands, ect.
HATE IT!
lilmoma

[Algernon]

Help!  I've been lucky with no itchy skin (I've done a lot of prevention) but my scalp is driving me crazy.  I scratch like I have lice!  (God, I hope I don't actually have lice).  

Any advice???

Sweet:  I'm sorry about your symptoms.  If you've never had it before, seems like it must be treatment related--call your dr.

Goof: Congrats on those early good results!

[cuteus]

it might be a good idea to schedule a consult with your primary dr if you develop bothersome symptoms. We can't always assume that is the tx or the hep c, after all things are wearing down due to the passing of time. HCv can cause kidney, nerve and some autoimmune conditions, and tx can rehash them or worsen things as well as trigger conditions we could be predisposed to. If you use NSAIDS, for example, they can cause urinary retention in some people which might show as swollen ankles and other edema signs. Reading that other people might be having similar symptoms can be a relief to a point, but a dr would need to rule out other possible reasons.

[lilmoma]

Oh here is a strange sx.
My breath smells like I am perming my hair!!!!!!!!!!!!
I know that sounds crazy!!!!!!!!!!
Everytime I brush my teeth, I swear Im in a hair salon,.and all I can smell is ammonia!!!!!!!!!!
lilmoma

[goldyn]

have you called your doc about what you are going through i have swelling on and off .....but im worried there might be something wrong with the ammonia smell.

[OnAPrettyPoison]

LilMomma, I was wondering how the swelling was going.  The ammonia smell may be something that needs to be checked out.  Did it start today when you started swelling?  Have you talked to your doctor at all about this?  I recall reading about this somewhere, I just can't remember where.  I hope work is going okay for you this week, and I hope that you feel better!

Sweet, no problems with pain for me, but occasional restless leg stuff that goes on around for a day or two after shot.  Are you on procrit?  One the SX is bone/joint pain.  I know this isn't any fun, but we are as tough as we have to be!

Feel better soon!

[lilmoma]

Well, I read that Chevygal,...thanks for the info.
I did go in for my labs today, but seems to me it was the alt, ast, ggt, and cbc w/diff.
I guess when I talk to my hep nurse on monday I will see if there are any red-flags.
Actually, there were several things on that list at the web-site that could be causing this, sinus infection, or something.
I am so miserable, and I gotta stick a needle in my sore little tummy tonight. (shot #9) 39 left!!!Yeah, Im down to the 30s now.
lilmoma

[can-do-man]

Well my loving wife called my work and told the gals there what i did. Besides taking it tough, (pay back time i quess) you would not believe the sack of goodies that was on my desk this morning. On the bright side though at our next xmas party i already have their gifts. And they paid for them.

[strator]

Thanks for the reply. I might be able to get a hold of them in the Am. Otherwise it's 3:45 Monday. The last cbc was 3 weeks ago at 10.9. I've still been okay doing physical work everyday, though I've snuck in extra naps. The eating problem seems to have kicked up this week. If I can't get thru to them tomorrow, I'm thinking nothings probably gonna change big time before Mon. During most of the day I don't seem to bad. It does seem to happen more when I'm waking or laying down to sleep even for an afternoon nap. Maybe environmental? I can let things go in my room sometimes keeping up with the rest of life around here.:) who knows what toxins I've left in there coming home covered in dust and fumes from work.
My hgl has usually dropped at a a slow pace. If I don't get the doc and I notice a more serious breathing problem over the weekend the ER is just a few minutes away. I haven't ruled out the change in weather around here coming into play the last few weeks efefcting it all. Or maybe the meds are finally trying to kick some butt for me. Thanks though guys, I just wasn't sure if it's something that those of you that have had to face rougher sx have been dealing with all along.
Be Well Gentlemen,

[Mister beagle bailey]

Don,
The first month on meds my HGB was dropping so I had the problems you are having.  My HGB went from 11.5 to 7.1 and they upped the procrit.  I thought I was having a heart attach because of the breathing problem so my daughter took me to the dr. Not only was my HGB down but I was dehydrated. Glad the ER is near by in case you can't get a hold of your dr.

Keep me posted as to how you are doing, try to relax a bit that helps but I know it's not easy.

beagle

[sweet111k]

thank you all for helping me out on which direction to start with this progressing problem. it is an all the time thing, not on and off. lupus runs in my family. while i was pregnant my legs swelled 3x the nomal size, skin turned purple, itched like crazy and burned so bad at the same time i couldn't touch my legs. i was rushed to a major hospital 50 miles or so away from where i live. 18 and scared to death! they ran the tests for lupus. they found out it was vasculitis. after i posted on this site today i did some surfing. i found out about the cryoglobulinemia. I already had an appointment with my doctor today. i read the threads you all wrote, did my reserch, and was ready as could be to go. i mentioned all of the above and they are running the test for the cryo as they did find red dots all over my legs. if that comes back ok then they're going to look into nerve damage. they did the in office pins and needles test but thats a joke as i do have some back troubles that cause numbness anyway. it just helps to read from you all if any have had simular things happen because IT IS hard to know if it could be caused by treatment or on going problems. it also helps to keep the doctors minds open instead of just telling me it's my back trouble. luvedbygod, my latest biopsy shows hepatic cirohosis stage 3 grade 4. that was why the cryo caught my eye as well. it just helps to get a well rounded idea of what could be going on befor the doctors app. i know i have unrelated troubles prior to treatment that was why i didn't fixate on hep only. my latest blood work showed my sodium was fine. if you all don't mind there are a few things that worry me about this work up. just putting the highs and the lows--anion gap-5  creatinine-.5  bun-4  albumin-3.2  globulin-4.9  a/g ratio-.7  alkaline phos-95  neutrophils-.5  lymphocytes-1.0  monocytes-<.1  eosinophils-<.1  macrocytosis-1+  echinocytes(burr)-1+  schistocytes-1+  elliptocytes-1+  stomatocytes-1+  acanthocytes-2+  .  thank you all for your responces. i'm very greatful. p.s. my doctor sent a wonderful letter trying to get me into a reputable hospital for treatment refferals and clinical trials. it's a 4 to 5 hr drive but well worth it. i am resistant to pegalated interferons and have relapsed 4x. from a small town WAYYYYYY out in the sticks with not alot of options for doctors. you probably don't remember the post i made about the gastro that has been treating me since 2002. he didn't even know what infergen was! that was when i told my primary we had to go another route here! yikes! well thanks again. sorry this is so long. live by my self, no friends, no family, just my doctor. take care all, god bless and happy easter!