cryoglobulinemia

[garde]

Looking for answers on cryoglobulenima.   I have it, I am currently on treatments for my Hep C, but I have a strange feeling that once I stop my treatments, my symptoms of Cryo will all continue to get worse again (since I am not a responder to the treatments - this is my second time around)  They just wanted to get the viral load down to get rid of my other problems

[cuteus]

hopefully Ina will have time to stop by and give you some insight, since she was also positive for it. Bostongirl, Susan(tallblonde), twotells, and some other member also have/had to contend with it. Bostongirl and Ina seem to be the only ones coming around frequently and might offer firsthand experience with what they have felt.
Willing had posted a few links to recent studies on this condition, and the threads might still be around, down below.
stay well

[ifx23]

tx seemed to enhanc my cryroglobulinemia ..my already often cool hands and feet became ice blocks on a 24 / 7 basis. Symptoms have resided since finishing tx. Good luck with your treatment and as Kalio mentioned maybe this time it will work..Fingers and toes crossed for you :)

[SnoWav]

after 48 weeks of TX my C came back but so far the cryro hasen't
I have read about such cases hope Im one of them that stuff is no fun.Good luck

[BostonGirl]

Hello Garde;
           Sorry to hear you are not responding to your current tx. ( When I did tx, at first I was labeled a slow responder, then by 6 months, a non responder ) I know how you feel.

If you can >>>>> maybe post your vl, cryocrit #s per tx vl, ect. Are they keeping you on the peg for maintenence of cryo? I was told that would be an option for me, only if cryo came back raging, which it has not.

The interferon is 1st line of tx for any type of cryo, Cancer cryo or Hep cryo, it seems to calm everything down. I never became undy on tx, but cryo did clear at 4 months. 6 months still had the virus, but stopped tx.

One more thing, if you have cryo you must know that it can hit the kidneys pretty hard and trigger severe kidney disease, so have your doctor monitor your kidney labs very closely. Bun & creatine are the first to elevate.

Hope this helps, Sue  

[MissMiss]

Hello,

Maybe you can help me decipher my cryo test results?

Test:  cryoglb, 7 d
Under normal:   POS PPT 1+
Under low:      0.6%

There is no reference range to reference.  My thinking it is negative but the POS and cryocrit measurement make me wonder.  I am also on week 37/48 and am wondering if tx reduced the cryo measurement.  Is there cryoglobulin in everyone's blood?  

I've looked around and only found how the test was done, not how to read the results.  Any help would be great.  Probly worrying for nothing but some things are better known for sure rather than wondering about.  

Miss

[willing]

this is a bit far out on the fringe, but, given the recent studies correlating HCV infection of PBMCs with cryo., there may be an interest in testing for PBMC-specific infection, pre or post tx. To date this has been done only in a research setting but a recent paper (<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16384611&query_hl=12&itool=pubmed_DocSum">Real-time multiplex PCR assay to quantify hepatitis C virus RNA in peripheral blood mononuclear cells</a>) suggests a commercially available test may be forthcoming. If you're interested, it may be worth contacting the authors.

[MissMiss]

Thank you for taking the time to post.  I was afraid of this.  I see doctor next week and need to get my ducks in a row for this.  Blood levels are so low now I am afraid he will want to either reduce dosage or stop.  I'll post again and maybe some of the smart folks can help me with a case for strong treatment.  

Thanks so much for your help!

Melissa

[MissMiss]

Thanks for posting again.  I am deep into googling now, worried about my appt on Tuesday.  Sure appreciate your knowledge sharing, it means a lot to me.  There is so much to learn and so much to scratch through for accurate info.  

Melissa

[giddyup]

I have a positive cryo test but I dont know the %in my blood. It<s good to know there is a second test and I will ask for it. The Cryo effects my hips and knees and this is not the typical area effected so I'm concerned about mis-diognoses.I was upset when my pain managment doctor told me my pos cryo result meant nothing w/o a titer but my hep doctor believes it's good enough just to have a pos result.The hep doc believes that due to the nature of cryo Retuxin infusions should calm the symptoms.For now I take daily Oxycodone.

[giddyup]

Very wierd.I wrote a long post but only these words came up.To truncate my post thanks for the info on the tests I only have a positive and will go for a titer. Also My hep doc believes that Retuxin therapy should halt cryo symptoms.

[MissMiss]

I am sorry to hear about your positive.  Where are you on tx? When will they find out the %?  I hope it is low.  Ina knows a lot and doesn't mince bones about it.  Start googling and find out all you can.  Here is a link for some info.

http://jcp.bmjjournals.com/cgi/content/full/55/1/4

I did read a bit about Ritux(sp) and wondered about asking for it too.  Best of luck and keep is informed.

Melissa

[giddyup]

I have a positive cryo test but I dont know the %in my blood. It<s good to know there is a second test and I will ask for it. The Cryo effects my hips and knees and this is not the typical area effected so I'm concerned about mis-diognoses.I was upset when my pain managment doctor told me my pos cryo result meant nothing w/o a titer but my hep doctor believes it's good enough just to have a pos result.The hep doc believes that due to the nature of cryo Retuxin infusions should calm the symptoms.For now I take daily Oxycodone.

[garde]

Here are my cryo lab results.
Cryoglobuilin, Qual, Serum was positive. cryocrit at 1.5%

Immunoglobulin G was normal

Rheumatoid factor (RH) was 332

these tests were don3e in Sept. 05.

Im currently on tx to bring the my viral load down, then they want to put me on maintenance to control the cryo.  (I was on treatments 4 years ago, but did not respond).  This time they want to keep me on for the full length of the treatment.  

The cryo is causing me a lot of problems, and I really can't ignore it.  I have constant leg and joint pain (which has improved greatly since I've started treatment).  When my feet and legs get cold, by blood vessels break.   Expecially when I fly.  I try to take precautions and keep my feet/legs warm during the flight, but it does not seem to help.  Any time my feet get iritated by shoes or something, I get more broken vessels.  I have many spots on my legs.  I also get really bad hives.  Just come out of nowhere.  Have not had any since on treatment.

I go to the doctor this week, and I will ask him to test my kidneys also.  I have not done that yet.  

[garde]

Boy, you were on treatment for 2 years.   Not the full dose, I hope.  My doctor is planning on keeping me on the treatement after my full does treatment is done, and the viral load is down significantly.  But he will put me on what they call "maintenance".  I just got tested for my viral load last week, waiting for results.  I've been on treatment now since January.  Viral load was 4.4mm, then went down to 1.1m in a 4 month period.  

My cryo is much better, leg/joint pain has improved greatly.   Still there, but remarkably better.  My legs/knees still keep getting numb.  Somedays I have trouble walking down my stairs.  I will be flying soon, so we'll see how the vasculities does.  

Keep you posted.

[garde]

I just got my viral load back.  It went from 1.1mm to 76,000.   Looks like treatment may work this time.  So now I get to stay on for the duration.   Hope it stays down, so the cryo stays under control.

[MissMiss]

Just wanted you to know someone read your post and wishes you the best clearing this ****.  Thanks for posting your #'s.  I am still looking for more info to justify extending treatment although being finished in 8 weeks sure sounds good.  

best of luck to you.

miss

[scruffy]

peek-a-boo

[can-do-man]

Chev, Hi gal. Hope all is well with ya, Hope you had a good 4th.

Scruffy, Don't think i:ve had the pleasure. Name is zack go by cando. I know a real creative nic. But after 3 years of hearing my wife and doctor tell me you 'can-do' this. I just added the man to it so not to confuse myself. Hope all is well.

[can-do-man]

friole, hi gal. Your down for the count. Soon it will be offical and you'll be svr. Well unless you feel sorry for me and want to go on. I've only got 999 shots to go. Stab one in and only 998 to go. Of course if you want i'll give you 2/3's of mine. NA just wouldn't be right. How about 50/50?

Honey, been a while girl. You doing ok honey? Just love you nic honey, honey is such a sweet gal. Miss seeing you post honey. Well honey you take care of yourself.

[scruffy]

Very glad to meet you Zack. I hope we can continue to get to know each other-no rush. Candoman is a very positive nic-beats Scruffy easy!

[honey11]

Hey Candy Man! Glad to see you joined us down under lol  What week you on and also wanted to ask you how many you doing?  I know the ride can be rough at times but you are doing it!  Sometimes on interferon,,,,all we have is our craziness and that is definitely not a problem for you!  Keep Smiling,,,There will be an end to feeling bad.

Twit???  Oh boy,,,,Can't even imagine why you are signing on under that lololol
Well,,,,at least you didn't come back as Tater **** LOL

[honey11]

Ohhhh how funny,,,,That was blanked out????  I have seen worse lol

[Tater Twit]

LoL....
Honey... U cracked me up.....The #'s on the filters leave LOTS to ponder....
Hummm, maybe u used my original name & had a typo & hit the "i" instead of an "o".... TeeHee.. or maybe you used this name & replaced the "i" with an "a" & called me a "Ut-Humm"...... LMAO

Ya'll can't be down here having fun without me... it just wouldn't be right... So I was forced to quit Tab-Hangin... Ha!

I was lack in imagination on the spur of the moment name... It was called "think quick & type fast" (in which I do Neither)
but when borrowing others wireless bandwidth ya have to because you never know when your gonna loose signal & drop out!

Mr. CanDoMan......

How's it going "Zackawy"..... A Little Bird Told Me That You Have Been Having A Tough Time As Of Late...???? TX SUX don't it!

It's nice to finally put a name behind your monkier...
& Speaking of Monkeys & Frog Hairs....

I be finer than a frogs hair located half past the freckle on a monkeys arse.... LoL...Everything is just tickety-boo since I got off of TX, I'm not out of the woods, BUT I've never felt better... Yes Sir-eeee!

Sooo You have a LOT To look forward to Zack.....!!!

I've thought about you, & many others here often.... Glad to see you are still hanging in there....

How much longer do you have to go (SERIOUSLY)...??

I'll be back... the Fire Protection Folks are here to inspect the alarms in the building!
:)

[friole]

Well, how-dee-do

Can-do --well, it is good to see you down here.  Now let's go drag Fishdoc down.  998 to go eh???? Hopefully I just got my last 15 syringes at the pharmacy this week. -- that's not counting the Peg - so that makes it another 20 poke holes to go -- and that's not counting what the vampires do at the labs -- and they are worse than me!  Still, the end is in sight!!!!!!!

Farmer Chev -- what's up girl, covered in Zuchinni?  My zuchinni connection moved out of town and I am going thru summer zuchini withdrawal.  Plus our meagre crop of tomatoes has problems this year -- don't taste up to snuff.

Honey pie ?  So glad to see you .  Do rented the movie -- we loved it.  I do read, about a paragraph a night -- was trying to read a "short History of the World" by Bill Bryson (who is funny, but not THAT funny) but have switched over to "Ya Ya's in Bloom" by Rebecca Wells - hysterically funny (my hubby only reads non-fiction and thinks I should too).  Anthony Hopkins is great in the World's Fastest Indian.

Tator - yahoo -- I personally like the twit end.  Yikesy cripsey - are we ready for the not-txed tator?????? Oh my or my, here we go.  How's the weather up there in fog land?

Hey Frank - just wanted to tell you I am absolutely honored to look like, or to be held in the same esteem as your sisters.  Must be that good old midwestern stock, don't ya know?

bean

[Tater Twit]

Boo

:)

[can-do-man]

Boo reminds me of who. twit reminds of.........Cliff? no thats not it, Oh well it will come to me.:):)

[can-do-man]

Farmer Chevs almanac, She be a pickin and a grinin, a growin and a hoeing. Plantin in the morn. and feasting in the eve.

My favorite snack food. So your done jabin huh? Now ya just being jabbed.:) So good to hear from you, always make me smile and hungry too. I hope ya made it this time. You deserve to.

[can-do-man]

You tell me.......come play on tater twits teeter totter... we got a playground donchaKnow and a polelski for cuteuspieous..

WOW, id love to teeter on taters totter, love doing things that go up and down, up and down. Heck tator we could even switch sides and you could be the one that makes that teeter go up and down.

Now chev as for that polelski, that sounded great till i thought i was going to get the c*ap kick boxed out of me. I still have those dreams though, but wake up in a cold sweat shakin.

[honey11]

haha Chev! I bet you did but it was actually probably me and few hundred others!  Oh well,,,I know you love the games and us tracking you,,,right?  

LOL Twit!  I didn't think about TOT with the I but that wasn't what I thought,,,,Twit with an A!  Hey,,,this is all fun and games but where did you end up?  Did you all rent an apt?  And are you a permanent resident there,,,I mean not going back to GA again except visiting?

[can-do-man]

Now honey, get your mind out of the gutter..... Ok i'll be honest i thought twit rhymed with a word that starts with a C.

And to think i was as pure as the driven snow till i found this site. Oh how you gals has turned my mind into a gutter.

[scruffy]

Honey! You stay right here in the gutter with the rest of us!

Tater Twit...unbelieveable. Name 64988242?(ms potato)

[mikesimon]

I am steaming. Were you ever going to tell me about this meeting place? I guess I know who my real friends are and they must all be hanging up top. I'll go back home now - I hope you're all happy. Madmike

[fishdoc]

OK, finally found it!!  Can man and friole, good idears, whoevers it was.!!  good way to prevent people from getting miffed because you "used" their thread....I gotta tell you that last one, under the sudden weight gain.... let me tell yall, I flared, its a good thing I wasn't in the same room, cause I just flamed.... fortuneatly, my momma taught me its not my lot in life to tell other people how to act... so I didn't respond...but it sure put my panties in a twist for a while..... couldn't be the riba.....

btw, TGIF!!!

[friole]

fishdoc -- hooray!!!!! I never saw that thread on weight gain....... maybe I need to go back and look for it..... but don't worry -- you can say ANYTHING here.  dis be the place.  Hey -- for a few brief moments I thought I could hop a ride to Roswell and thought I could pay you a visit.  -- may still happen yet, but details unknown.

chev -- I am waiting for my package of mush --- will make my compost sing!  You MUST see the Worlds Fastest Indian --- the main character -- Anthony Hopkins - is you.  He can walk into any situation, any room and walk out with friends for life,  Ms Chev, just like you!


Mike ---- took me a day or so too but welcome!  All is well - we want happy mike!

TGIF to all

[mikesimon]

I've simmered down just a bit.  Mike

[donAlfonso]

Boy, you just never know who you're gonna find lurking at the bottom.  You all crack me up.  I never knew about this.

Off to Maryland/DC for the weekend.  Hope all is well with everyone.  This is just too funny.  Love you all.

Tom

[mikesimon]

Well, it's nice to know that I'm not the only one that got kicked to the curb but I'm sorry that you're the other one Tom. Mike

[honey11]

Hey Mike!  haha  You should know since you are one of the original BF's,,,,,always scanning bottom but,,,,don't worry,,,if you wouldn't have joined soon,,,,I would have pulled you down here lol

Hey Fish,,,Glad to see you!  Okkk now you have me curious and I'm going to check out the sudden weight gain thread! I had to tell you one day last week,,,,you were posting back and forth on a thread to some others and you had me cracking up!

Hey you others,,,,yeah you gutter feeders lol  Happy Friday! And to all taking shots,,,,Cheers!!

[friole]

How funny - I just went back and read the weight gain thread. I like your assessment of that screen name a lot better too.  You do good work girl -- keep it up.  **** will recover.

[fishdoc]

yup great idea, can man emailed me and told me to look at the bottom of medhelp, so I went to the first page and at the bottom was advertisement for a televised robotic prostatectomy.... so I thought he wanted me to try it on him.....had me worried for a minute there.... I know I'm up to it, but "gentle" is not my strong point.....

[Tater Twit]

Hey... DeJavoo (sp)... I think I know some of Ya'll...
I see some darn familier faces ..... Tee Hee
Feels Like Home...

This Thread has Cracked me up... It's nice to see we are in the gutters again... now IF I could just get some reliable internet... Grrrrr... Oh Well on the 16th that will no longer be a problemo!

Fish Doc...
LoL.... It's always safer on the bottom... I used to stay down here to stay out of everyones way & out of trouble too! I never had anything of medical value to contribute, & always had to tread water when I am "up" there ...
Glub, Glub.... my social skills must be terribly lacking.. Ha!

Honey...
Well... not sure how to answer that.... I have a return ticket for August 31st (but I don't intend on using it) I guess I'll pay a fee & change it to "when-ever" just to keep from loosing it... but I have no idea "WHEN" to change it to!

I was actually originally thinking about using it to go visit my Grandson... but I just got off the phone with my youngest & I think I have decided to arrange for them to fly here instead... the only thing I NEED from Ga, is my DOG... so maybe I'll just have her crated up & delivered at the same time..???
Sounds like a plan to me! I have no clue what I am doing actually... Maybe I'll do something wild... Like get married or something... Ha!

Bean... The Fog Has Lifted Today.... It's actually Sunny Out... I hear the winter is when they get most of their rain here... suppossedly last year they got like 45 or 60 days straight... Shish... I'll bet that is no fun.... where's the ARK when you need it!

Where is the Can-Do-Man today... is Mr Zackawy out kicking up his heals & doing the CanCan today?

Chev...
My worry Dolls Are @ home having an endless party... hope they behave, don't trash the house, & don't get pregnant while I am gone! Poor Deano's are`Locked Up In an envelope on the desk in confinement... it's a good thing too because I'd hate to get back & find all my tree's in the yard looking like those Aussie ones... something tells me the neighbors might not approve!

Okay I have to go thaw something out for Din Din... Hope everyone has a great weekend & those TXing are blessed with little to no sides.....catch up w/Ya'll on the Flip Side Shortly...

[friole]

donalfonso good to see you here too.  Old habits never die.
Sounds like a fun weekend -  I love DC and don't get there nearly enough! Throw a penny in the fountain for me -- don't ask which one.  I had to go to someone's office today and getting off the elevator in the full length window across the hall was a full length pic of George Bush waving -- kind of disconcerting - think I'd have to change floors......

doc of fish -- well had to look that one up!  televised robotic prostatectomy - don't know which part hurts the most -- thinking about a robot doing prostate removal or having it viewed on tv --- sure glad I'm a gal!

[fishdoc]

Yup, me too.  Have you seen Robin Williams act on his prostate?  We have a guy at work thats a little bit obsessed with his, and my son was visiting for a day... I told him "watch this..." and said Hey James, hows your prostate these day.... I snuck out five minutes later, leaving my young boggle minded son to hear the next twenty minutes.....life is good, is it not?