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Avatar universal

Life 10 days after tx

Just want to let everyone know that life gets better after tx.  My mind became clear yesterday for the first time and my energy is really starting to come back.  I just can't wait to get to the mountains and snow and take a cruise.  My zest for life is back. The drugs seem to leave the system fast.  The only bad part is my hair is still thining.  I don't like this part because.. I want my looks back, LOL! For me.. tx was a battle ground.  I don't do meds very well.  All drugs seem to effect me worst than mosts.  So don't let my story stop you from Tx.  I really was effected mentally from the drugs.  I felt I was in in some strange space ( maybe that is brainfog).. I did not feel that I could see the world correctlty.  My husband of 15 years did ok at first and then got pretty mean during the last six weeks. The closer I got to the end.. the more he complained he did not need to put up with me. My husband was not very nice during the end 6 weeks.  He felt his rights were viloted because I was moody.  He was angry so he became extremly moody, walking away from me, slamming doors, not allowing me to talk and drinking like a fish.   He now can see I am better and claims he did not really understand how sick I was?  He did not listen to me, he refused to do any research and was too self imposed with himself to see that someone was hurting.  He wants everything to go back to normal.  Life will never be normal again because I have now had to learn the hard lesson to put yourself first.I have learned a great lesson.. and will forever be a better person.  Tx was worth it to me
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Avatar universal
missmiss; I remember your name, but don't ask me if I remember your stats or anything else, gosh, sorry, but you can refresh my memory anytime.  I hope the sides are kind to you.


goof; I have been worried about that hgb of yours, glad to see you posting an improvement. I don't know how you function, it seems you have enough energy just to breathe and basic metabolism, but barely.
as for the hair, it has been mentioned that the tx have created what was termed, spokified (as in Mr Spock) or groucho's eyebrows in many here. As long as the description does not fit your case, you are ok.
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96938 tn?1189799858
May be the grass cutter can take care of that with a weed whacker. I'm sure you know the schedule.
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92903 tn?1309904711
When I stepped up to 60,000 procrit, I asked if I could just do 40,000 every 5 days. They said sure - it works out the same. It seems easier to me - I think I got the idea from Jim.

BTW Everyone, on the procrit note, it's finally working. Up to hgb 8.7 now, and whoah is that a difference! Platelets are up. WBCs are up. The sun is shining and I still have my teeth. Now if I could just do something about this hair on my butt...I thought the riba was s'posed to help with that......
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Avatar universal
First, I have to say how much I admire everyone who can remember everyone's name here.  Wow!  I can only hope you know who I mean.

I have to do 60 of Procrit 1X week.  They come in vials of 20 so I was worried about the needle getting dull.  The Pharmacist gave me those twist on and off one inch needles to draw it out and then I put the smaller needle back on for injecting.  The longer needle allows me to push enough air in so drawing it back out by vacuum makes it real easy.
I inject the whole amount oh so very slowly, probly takes five minutes, dunno.  Feels like an hour!  Too fast and I would get the bubble talked about and the burrrrrrnnnn.  

Neuralgia's--I, too, have been DX'd (pre-tx) with Trigeminal Neuralgia but don't believe it.  The face pain was just awful.  Just as you describe.  Even got a handicap sticker just to stay out of the wind and cold longer when out and about.  Also, a recent (pre-tx) neuralgia in a foot that ruined a trip.  Ended up in ER in Portland thinking it could be a blood clot.  Have had other bad neuralgia's unexplained too.  Wondering if these can be related to HCV.

Shingles & Herpes Simplex--How many of you also have these?  Shingles can be dx'd by drawing the pus and analyzing.  But the herpes/cold sore thing I always wonder about.  Maybe we are just so worn down living with the C critter herpes has a chance to take hold.  

Just ranting a bit here.  

Missmiss
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Avatar universal
You can have your NP write you an rx for any needle/barrel combo you want and walk into any drugstore. Might be quicker than waiting around.

-- Jim
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29837 tn?1414534648
Thanks to all for your input. I didn't mean to dissuade anyone from using Infergen, which could be extremely beneficial to non-responders like myself. Remember I'm gettin a mega dose. You would get 15mcg instead of 24mcg as I'm getting. Maybe it's because I'm crazy or determined, or both. I highly recommend using Infergen and not to be feasrful of it.

As for the harpoons, I have to agree that we're not injecting whales here, but the pharmacist may not be aware of what exactly I'm trying to do. A big bubble appears under my skin after I inject. Almost looks like a small Alien is trying to bust out.

This is morning 5, and the easiest yet on my head. I took an 800mg Ibuprofen which seems to help somewhat. The headache is still there though. I do have 5mg and 80mg Oxycontin in my medicine cabinet, but choose to ride this out without additional chemicals. Yes, I drink a lot of water.

Hopefully this headache torture is just the adjustment period for the medication. I don't know why doctors don't start all patients with Infergen, therefore bypassing the variable that treatment may not work with the standard Peg-Intron. Otherwise, it's up to you. Have a pain free day...

Magnum
Helpful - 0
Avatar universal
When I first looked at those needles I was like WHOA what is this?  At this point it looks straight like it could go through my leg it's so big!

In NY we can't buy needles without an RX you have to go to some needle exchange place or something and I am WAY to chicken to go to that part of town.  Actually up in the suburbs where I live they don't even HAVE them so I'd have to go somewhere else.

That's why I used the one's she ordered me (plus I spent $20 on them and that's not chicken feed to me).  But they are so huge it's like torture!

Amazingly I remember my posts "how am I ever going to give myself a shot! help I don't think I can put a needle into myself! help Jim how am I going to do this!".  Boy oh boy does treatment change what you THINK you can do and what you actually CAN.

Three weeks left now?  :)  Is that it?
Helpful - 0
Avatar universal
If you don't want to wait for your NP, check your local pharmacy. Depending on where you live, you may not even need an rx to get needles and they're pretty cheap. As I suggested to Magnum, try a 3ml B-D barrel for your Procrit shots using the Luer-Lok interchangeable needle system. You can use a 5/8" 25 gauge needles to draw the meds out and then switch to a 1/2" 27 gauge needle for the actual injection. Currently I just use the 1/2" 27 gauge needle both for drawing out the Procrit and the actual injection but I think the needle does dull some pentrating the rubber. But using a 1" needle -- WOW -- wadda they think you are -- a horse LOL. .

-- Jim
Helpful - 0
Avatar universal
The nurse called me in a whole entire batch of the 1" needles and I've been trying to use them without shoving them all the way in...(for my Epogen)  Since I have hardly zero fat on me anywhere it's a MAJOR pain in the neck (or thigh I mean).

I have to bring them back and get those diabetic type needles I had first they were so much better than the HARPOONS.

On another note: when injecting the Epogen I always have to go very slowly and stop and go and stop and go...I just don't think there is anywhere for it all to go at once and also it burns and I am a baby!

;-)

I don't care how much it hurts though it's worth it.

Now that I have dropped to once a week...amazingly when I woke up in the middle of the night last night I could TASTE the Epogen coming out of my mouth and smell it in my pores.  YUCK I was better when I was obvlivious!  Now I remember how much that INTERFERON stinks and realize that too is still coming out of my body...I've just gotten used to it and don't smell it anymore.

Hello double dosing Channel Number Five!
Helpful - 0
Avatar universal
Don't know if you caught some answers to your syringe question in earlier posts.

What I suggested is you use a 3ml BD brand barrel using the Luer-Lok (sp?) system. It should be large enough to hold all your meds and small enough to be handled easily.

With Luer-lok, the needles are interchangeable (screw on and off in a second) so you can use a smaller needle with a larger barrel, for example.

So in your case, you'd probably want the 3ml barrel with a 27 or 29 guage 1/2 inch long needle. Some people actually use a larger needle to draw the meds out of the vial and then switch to a smaller needle for the actual shot. That way you're not injecting with a needle that has become somewhat dulled by penetrating the rubber.

That said, depending on how much fat tissue you have, some people have problems injecting too much fluid under the skin at one time. I usually inject Procrit in my thigh and there's no way I could inject more than 1ml at a time. Even then my skin often really "pops" out as the meds go in. If you find this to be the case, the fix as others have suggested is to do two shots. But one shot or two, a 1" needle is much too long for the type of injections we do. Needles of that length are often used for injections into the muscle and that's not what we're supposed to do.

All the best,

-- Jim
Helpful - 0
107513 tn?1232286464
Quick question for ya? How much water you drinking before bed, or are you keeping a glass next to your bed at night? I would wake up with headaches all the time. Each morning I felt like I was trampled by a stampede or something, and I asked Doc about it.
her response, not enough water at night. The body dyhradtes as we sleep, and most of the time we get up to urinate. Well, I started drinking like 20ozs of water before bed, and also keeping a big glass there while I slept. Everytime I woke up to urinate, I drank a glass of water. Headaches went away!!
I've heard alot of other people complain about the same thing, and the water is an easy remedy.. Other than sleeping hooked up to an IV drip!!
Feel better man!
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Avatar universal
Ha. You must be really tough to put up with sx like that!I consider myself strong,but I don't know I'f I could take the headaches.Have you talked to doc about pain meds for that?Hang in there my freind I'll pray for you today.I'm sorry I can't help with the syringe ?,but I'm gaining knowlege from your comments!

Dyce
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Avatar universal
can you split the infergon into 2 smaller syringes and inject twice?  some meds are thicker and need the larger needles, but if this isn't the case...2 might be better than 1.  yes to the daze...and i'll keep my eye out for a whale
lorrie
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Avatar universal
I've had the killer headaches on regular combo, I liken them to migraines; although I'd never had migraines before. Some have found relief with migraine meds, I tried Imitrex but had a bad reaction. They did take the headaches away, there are other brands too; ask your doc. For me I take 3 Excedrin Migraine and put cold packs on my head and lie down for a while. It works for me. Be Well...Peace
Helpful - 0
Avatar universal
Congrats on entering a new version of normalcy and glad you have been getting some relief as the meds exit your system! I have followed your dealings with your hubby on and off and hope he finds a way to take HALF as good of care of himself as you have yourself. In my book that would include a renewed committment to sobriety and making amends to you. Thanks again for your liberal use of the term "doable" here the forum to describe Tx. I often use the term to help describe what Tx is like to others and remind myself of that fact during those times I need reminding. BTW, I'm halfway thru my 48 weeks.....  :)

- Lee
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Avatar universal
Congratulations!!! I'm glad for you and it reassures me that people who tx hcv with thease strong drugs,get back to the norm.when they finish up.I watched a freind tx back in the early 1990's and that scared the heck out of me!He had a very hard time and the sad thing was he didn't clear the virus.Thankyou for this good news.This helps for I'm looking to tx next month along with some others here.

Much Good Fortune
Dyce
Helpful - 0
92903 tn?1309904711
Sorry, messed up my linking last time....lets try the cut and paste....

http://www.funnies.com/grosseyetrick_funny_picture.htm


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Avatar universal
Hi

I had what I would only call "monumental headaches" from week 8 through week 22 ( now at week 32/48 ). They finally began to diminish around week 18. They were on the right side of my face centered around my eye. The pain was an almost constant crushing pain, but I would often get an electric shock like pain attack, after which I could only lie down for hours.

I was diagnosed with shingles, but now believe that was wrong. My GP and I now believe it was a form of ATFP (Atypical Facial Pain) and Trigeminal Neuralgia, which seem to be related. It was far and away the worst pain I ever had. I did not eat or do anything. Just the fear of the electric shock pain attach made me afraid to get away from the house.

I started tx at 6'1" and 160lbs, during that period when I had the headaches I got down to 142 and became very sickly. I was ready to give up on tx when they began to diminish. I have since gained back 10lbs.

Please make sure the headaches don't stop you from getting proper nutrition as it did with me. I was very close to going into a tailspin because of my lack of nutrition while on tx.

Here are two links to what I think I had

http://facial-neuralgia.org/conditions/tn.html

http://facial-neuralgia.org/conditions/atfp.html
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29837 tn?1414534648
Not to deviate from this thread, but I just wanted to pass this on. I have to take 24mcg of Infergen daily. The problem is that the syringe barely holds all that and the plunger keeps coming out when I draw the Infergen. The pharmacist gave me two syringes to try, which are bigger. The only problem is, the needle is at least one inch long, if not longer. I decided to try it once. Man am I sorry. It felt like a harpoon going into my stomach. There's no way I can do this at one shot per day for 48 weeks with harpoons. These needles have obviously been designed for injecting whales. So if you have the opportunity to use these.... Don't.

I notice that Infergen really wreaks havoc on your stomach as well. I now take Nexium, but would rather take Aciphex, but my insurance company won't cover it. Only in America. Let's say that I'm thankful to all my well wishing friends here, and that I plan to continue this bombardment, and quite a bombardment it is. The doctor is testing me to see if I can handle this load. It's going to take some astonishing will power, but I'm ready. Anyone else feel like they're in a daze from this treatment wile walking around in stores or driving? I do.

For those of you who have not responded in the past, Infergen has a 40% change to make you undetectable. I'll take that. If you're part maniac, then this Infergen treatment is for you. If you're a die hard jock, this treatment is for you. If you want to prove your bravery to your friends and family, this treatment is for you. If you know of an aquarium housing a whale and it needs injected, I will send you my syringe...

Magnum
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92903 tn?1309904711
Sometimes they can <href="http://www.funnies.com/grosseyetrick.jpg">drop a bit</a> in the night.
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29837 tn?1414534648
Looks something like mine but can't be sure...

Magnum
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Avatar universal
Please don't go watch the movie Jeepers Creepers no matter what you do...I'm afraid you'll find out where they've gone to!  ;-)

I'm sorry but it was funny.  We shouldn't think anything in pain of treatment is funny but sometimes a good laugh in here is worth a whole lot.
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Avatar universal
Hey girl well done !!!! Sorry to say it but my hair didn't stop falling for another 2 mths post tx, but hair falling out was more an irritation than anything else for me... but I can say it's growing back now & is a couple of inches long !
Helpful - 0
29837 tn?1414534648
Sorry to barge into this thread. I wonder if anyone else has experienced this enormous and monumental headache each day when you wake up while being treated with Infergen. It feels as though someone has taken a pair of needle nose pliers and pulled my eyeballs out.

I womder if anyone's doctor has prescribed anything for this. I did not experience this on my three former treatments. They were not on Infergen and not a mega dose, as I'm taking. I'm not wimping, just suffering. If anyone has seen my eyeballs, please let me know...

Magnum
Helpful - 0
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