severe muscle cramps

[niki12]

I have a question regarding muscle cramps (pre tx)  I wake up at night with charlie horses and am constantly having some sort of muscle cramp.

Can anyone tell me what causes this or what I can do to stop.  I am only starting tx in January.

Thanks,

[coeric]

hi - i also experienced leg cramps for years prior to treating.  i started treatment in september 2011 and finished in august 2012.  within one month of starting treatment the cramps disappeared.  others here with more advanced disease have also complained of leg cramps too.  prior to treating i found hyland's leg cramps over-the-counter supplement helpful. i kept a bottle on the bedside table and popped a couple when the cramps hit me at night.  it seemed to temporarily help.  

you posted under an old thread.  you might want to start a new thread and get other opinions.
blessings
eric

[ImReady57]

My doctor told me to quit eating red meat, it causes Hepatic Encepholopathy...? this condition can send you into a coma, as it affects your nervous system, and your brain function. If you have "Shakes" , "Trembling" of your hands and tongue, you may have this. Google it, I may have spelled it wrong, but you can find it. I came to this page because I have been experiencing severe leg cramps, for a long time. I still haven't found an answer, but, will see my doctor again on the 31st of this month, January, and will question him. I have had HVC since 1990, after I received some contaminated blood.

[Dweav]

Well I can say if you know you have had Hep-c for 20 years or more then I would do what ever test and check you can to find out what state your liver is in.  Best I can tell I had it for around 25 to 27 years.  I when from a normal life to the last year running down hill fast. I got sick and had a bleed end up in the hospital for 15 days and a month later I was told I had a year or so to live with out a transplant. Over that next year all it did was get worse. The hard thing about it was when I was listed I was to the level of being sick to be up on the list I was I think they call a #3 and it wasn

[strator]

Wow Goof- thanks for that article. Guess it's a lot better to let my son laugh hysterically at me hopping down the hall out of the movie theatre with a charley horse, as he did once, than playing doctor on my own. Funny they mentioned malaria cause it was probably from my Dad that I first heard about using quinine. He was a medics aid on the line in WW2 and also had malaria and he once told me they used it for a lot of stuff then. taaanks.
I will tell my Dad, he's actually quite an internet user. Years ago I showed him how to use it and he happened on to ebay. Within a coule of weeks I'd get home from our house looked like a ups drop off center, table saws, all kindsa gadgets, he even tried to buy a yard tractor til I pointed out we could get one locally for only $1 more without having to drive to the airport to pick it up.
Quite a picture -us hopping and hobbling on charley horses to the finish tape laughing hysterically.
:)

[cuteus]

sounds like you are having a rough time in your present life, how long have you known about your hep c? What genotype? Sometimes we have to tune everything out for a while.
take care

[vextor]

Sorry I was cut off and can't find a way to edit my last post hope you got it. Along with my ailments I have no patients for technical inferiority.

[vextor]

Cramps

[GoofyDad]

Hi Don,

Read about <a href="http://moon.ouhsc.edu/jgeorge/Calvin.htm">this poor old chap</a>....drinks such as tonic water and Schweppes Bitter Lemon....contain quinine.  Although ....low, it is enough to cause severe low platelet counts and critical bleeding in patients who are sensitive...

I'm doing pretty well, thanks. The sides are cooperating and things are OK. I'm going through some severe issues at home, and that's going to be hard to manage on tx, but like you said, I'll just need a bigger shovel.

I won't complain, look at you and your Dad's issues. Glad it was a success for him and send him our best. I'd like to hear that, "Hey Dad, the internet said to say Hi"!

Anyway, you keep posting your inspirational stratorisms, and I'll keep trying to be funny. We'll hit the finish line togther.

  

[jmjm530]

That all makess sense. I've skipped some scheduled CBC's recently as well for similar reasons. :) And how you feel is as important as the numbers. The body will adjust over time to lower Hgb levels. So do I get my scheduled CBC today? I don't want to know...I want to know...I don't want to know...I want to know... :)  BTW have they checked your iron stores yet? Forgive any duplicate questions but you understand the anemic fog. :)

-- Jim

[GoofyDad]

There was a comment about quinine for cramps earlier. Just want to point out that can be an issue with low platelets. I have a link on another computer - ask me or google, it if interested.

[strator]

Thanks guy, I hadn't thought about any interaction with blood levels. I haven't found the info stuff I had a while back on cramps. For all I remember quinine might just be an old time fix. Maybe I'll google tomorrow. Right now I'm burnt out. Was up at the hospital all day while my Dad had surgery on his spine. All went well. Just one of those days when I really miss a good nap or 2 or 3. How you feeling anyways?
Don

[NYgirl]

Jim

They started me on 40,000 for two or three weeks and the hgb didn't go DOWN anymore but it did not go up from NINE and I was still feeling BAD (I mean I started at almost 15).  

I am going to get my CBC tonight after work. I skipped last week. I really didn't want to know. I got obsessd with NUMBERS and not so much of what my body was feeling.

Like if someone SAID I had a 9 I would feel BAD even IF I really rebounded up to 11 or something you know?

and look.....yesterday I felt pretty good...

I am a psychological psycho it would turn out ;-)

[jmjm530]

NY Girl said prev: "BTW I am on epogen not procrit. "
-------------------
Well, there you go. :) I was looking at my orange-capped 40,000 unit *Procrit* vial.

But assuming the dosing is the same, I'm still curious why they started you at 80,000 units/wk. Maybe the next time you see your med team you'll ask. Maybe I missed it, but how are you feeling and what level Hgb do you have now?

-- Jim

[NYgirl]

It looks like this

http://news.bbc.co.uk/olmedia/1715000/images/_1715894_epogen150.jpg

[NYgirl]

When you read the instructions on how to inject it says remove the RED PROTECTIVE CAP from the epogen vial

I think all of the epogen's might be red.

[NYgirl]

I know that it said 40 on the bottle.  Maybe it's really orange and just looks like RED to me.

I am calling the docs now to check (need to reorder more).

BTW I am on epogen not procrit.  Can that be the color difference?  Tried to look on the epogen website but all the color pictures are red there?

[cuteus]

I guess the doc freaked out for allowing you to drop so quickly unnoticed by their error. It makes sense they want to build you up quickly. My leftover Procrit is orange capped, but it does say 40,000 on the bottle, so when you read 40,000 on yours but see red cap, believe the words before the color. the label will have a lot number if you need to call the manufacturer, but only after someone else checks your bottle and confirms that it is indeed RED.  The fact that is working so quickly probably attests to it been 40,000, also.
Glad you can sit and drum your fingers now.

[jmjm530]

I just saw where you're red/green color-blind, so maybe getting somone else to eyeball the tops is a good idea. Also, did you see 40,000 units on the box or on the vial itself? If it's 40,000 units, there should be a big orange "40" on the vial itself. In any event, you should get those iron store tests done if you're not responding to the Procrit fast enough.

[jmjm530]

According to one web site I visited, the "red" topps are 10,000 units and the orange tops are 40,000 units. I know your vials say 40,000 units but in the unlikely event they were mislabled or something, maybe a call to the pharmacy is in order to doulbe check. Tell them you have red-topped procrit vials that say 40,000 units but you were told that red tops were only 10,000.

I say all this because I've never heard of anyone *starting* on 80,000 units/week. Usually you start at 40,000 units and then work up. Also, I just checked my fridge and the tops of my 40,000 unit vials are def orange not red. Maybe someone else can look at the tops as some of us see colors differently.

[NYgirl]

"If Wasabai is correct, you're only taking 20,000 units of Procrit a week."

Nope.  When I went to do my shot last night I examined the box and vials - Epogen 40,000 units per bottle twice a week (Fri and Monday I've been doing).  The top is definitely RED (I am red green color blind so that is why I was not sure if it's orange or not) but it's definitely 40,000 Epogen per bottle.

So that is 80,000 units a week.

Yesterday was the FIRST day I didn't fall asleep on my desk at lunchtime.  It was nice not to look like some moron snoring away...dribbling down my chin...at work ya know?

Snore.....dribble........snore.......dribble drewl...  ;-)

[MajNeni]

OK.  
Anytime your Hgb frops 2 whole points in a short time (like 2 weeks), you'll feel like sh--.  So whether you dropped from 15 to 13, or 11 to 9, the effect is a quick decline... and things like fainting, etc. can happen.  
Procrit/Epoetin, as Jim said, can not work if there is not enough iron to make hemoglobin.  My doc said it is better to get it from food sources, rather than supplements.  And, as Jim said, rule out other sources of anemia, such as shortages of vitamin B-12, Folate (folic acid) (and iron).  It takes 2 - 4 weeks for Procrit's effects to kick in.  (By contrast, Neupogen... Neulasta... Filgrastim... kick in quite fast for low white counts.)
For nausea, anything with ginger is good:  ginger snaps, ginger candies, gingerbread, ginger ale - even flat... who needs the gas?  Carry some ginger snaps if you're prone to nausea, for whatever reason.
For muscle cramps, quinine is great.  Easiest way to get it is in quinine water, aka Tonic water or tonic mixer.  Again, it's ok if it's flat, you don't need the gas.
Since these things can hit you at night or when you're getting up, keep a bottle of ginger ale and a bottle of quinine water near your bed.  And you can count the water, too!
Now, I go back to my SVR retirement.
Maj Neni

[linthomas]

Had to jump in on this one, I had always had extremely bad muscle cramps even in my sides, fingers just about everywhere, Started tx and they stopped, none!!!!!!!!!! But now I did start drinking alot more water and also taking Gabatril for that muscle disease I can't spell that seems to pop up with the hep C, also got my Procrit increased to 40,000 and by Monday feel almost normal, even went to gym one day last wk, my pulse has been dropping and ER got me Thursday before last, so they won't let me on exercise machines, just pool. But it's something. Figured out too many blood pressure meds. Im fine now, also guys it's about over, I hope, it was supposed to be Nov. 15th but they made my appt. for PCR on 23rd. And depending how it comes back then we test my donors, but I keep doing tx while all this is going on. Hope everyone is doing well, send me some luck, have a feeling I'm gonna need it. Thanks everyone Linda

[nyhepc]

hurrah!!  meds increased again! due to prior problems with anemia (and no procrit), i restarted with peg 90 and riba 400, 6 weeks ago. peg was upped to 135 at week 4 and riba upped to 600 today, and hopefully 800 next week. the kicker is that i can't have procrit til #'s drop. i know it takes 2-3 weeks to be effective, so the rest of november may be a lost cause. the part i don't understand...my 24 weeks will start as soon as i am on full dose (for me, peg 135, copeg 800). then why is it i did these last 6 weeks?  at least that takes care of the worry i had that i wasn't taking enough for it to work.
wasabi pea...i thought i was the only one on sub-standard dose. we are comrades
warm wishes to all

lorrie

[strator]

Oh Yeah! - Just this weekend my Charley Horses came back big time. Hadn't had any since pre tx 8 weeks ago. I do eat at least one banana a day. Mine attack while I'm laying down sleeping.  The other night woke spinning off the bed grabbing the back of my thigh in absolute pain. Realized too late I had Charley's in ther back of both thighs. THUMP! Happened similar the next night too. Feels like a too short bungi cord about to rip past it's limit. I believe quinine water was once suggested to me by a doctor. I'll try to find the info I downloaded on it awhile back, and post it.
Don