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Author Topic: Fuzeon: New to Fuzeon: Seeking Tips, Tricks and Guidance  (Read 3558 times)

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Offline Chicago4Me

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Fuzeon: New to Fuzeon: Seeking Tips, Tricks and Guidance
« on: December 01, 2006, 01:13:01 PM »
I have just begun taking Fuzeon. Second day. What a headache it seems it will be.

Anyways, I'm looking for tips, tricks and guidance from those "in the know" who have been using Fuzeon for awhile. I have given myself injections SubQ before, but any advice would be appreciated!

Are there any on-line support groups for Fuzeon users? I think my ASO has one that meets in person, but I also like to take my time and read through information. I have found a couple of Yahoo! Groups, so I'll give them a try, but would like anyone else's help that would like to share.

Thanks for any tips, tricks, and guidance!
Don't Cry Because It's Over... Smile, Because It Happened!

Offline Miss Philicia

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Re: Fuzeon: New to Fuzeon: Seeking Tips, Tricks and Guidance
« Reply #1 on: December 01, 2006, 01:33:02 PM »
Are you using needles or the Biojector?  I've been using fuzeon with the biojector (even travelled overseas with it) and while it's not something I particularly relish I've dealth with it OK.  The combination of it with the new TMC-114 (Prevista) has given me excellent results.  I'm also currently in a once monthly small support group for the "treatment experienced."
"Iíve slept with enough men to know that Iím not gay"

Offline Chicago4Me

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Re: Fuzeon: New to Fuzeon: Seeking Tips, Tricks and Guidance
« Reply #2 on: December 01, 2006, 02:21:09 PM »
I am using the needles that came with the kit.

Are you using needles or the Biojector?  I've been using fuzeon with the biojector (even travelled overseas with it) and while it's not something I particularly relish I've dealth with it OK.  The combination of it with the new TMC-114 (Prevista) has given me excellent results.  I'm also currently in a once monthly small support group for the "treatment experienced."
Don't Cry Because It's Over... Smile, Because It Happened!

Offline penguin

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Re: Fuzeon: New to Fuzeon: Seeking Tips, Tricks and Guidance
« Reply #3 on: December 01, 2006, 04:37:33 PM »
hello..

i stopped using t-20 recently, but had been using it for quite a while before that. I started using smaller needles when i began getting problems with isr's - a lot of people get on fine with the standard ones though. make sure you're alternating injecting sites too.

there are some tips here from The Body, and here from Roche which you might want to take a look at - i think the latter has an online patient support forum you can join, and info about (US based) community support too.

if you need any more info etc, do ask...you can also find a few older threads by other people here who use t-20 with some useful tips  by using the forum search function . I remeber at first it all seemed very coml;icated & difficult - after a while though, you do get used to it, & preparation etc just becomes another part of the day's routine.

kate
« Last Edit: December 01, 2006, 04:40:52 PM by penguin »

Offline jjmcm

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Re: Fuzeon: New to Fuzeon: Seeking Tips, Tricks and Guidance
« Reply #4 on: December 01, 2006, 06:43:33 PM »
I have now been on Fuzeon for just over a year.  I can't tell you that it really gets easier because it does not.  However, it becomes routine and before long your daily schedule will adjust around it.

First of all, go out tomorrow and buy a box of 100 - 31 Gauge X 5/16" (1cc) short insulin syringes.  If you want to minimize your injection site reactions you must use these.  I buy mine at Sam's for around $13 per box.  Some folks have insurance that covers them.  I also rub in Benadryl cream on the injection site after using the massager for about a minute to reduce the lump. 

With the short insulin syringes, you will have to insert the needle in the center of the vial top where the circle is between the thicker sides.  Pull the plunger back right before it comes out of the syringe, insert the needle into the vial while it is sitting on a flat surface.  Push the plunger down and gently flip both over into your hand and slowly pull the plunger back.  It requires patience with the small needle.  An air bubble will develop and the liquid will fill the syringe in portions.

Be careful, some of the syringes will allow you to pull the plunger out of the syringe body.  Once you have all of it, gently push the majority of the air bubble out.  A small bubble will stay at the end and will not harm you.  I personally reduce the reconstitution sterile H2O to just over 1 cc.  That way I can inject ALL of the Fuzeon in the vial.

Each person develops preferences fairly quickly about what areas of their body are the least reactive.  The most common area that Roche recommends that gives a lot of people problems are the thighs.  Most people I know simply can't inject there without major problems.  While not recommended by Roche, the chest is an excellent area.  Just make sure and pull the skin away from the muscle. 

On the abs, stay toward the center and not too far out to the flanks or to the waistline.  Each of those areas cost me a more painful and longer healing injection site reaction.   My partner has injected the back of my arms, but I recently stopped because they are just too painful.  I workout and have little skin to grab there.

The bum bum worked well for me for a while.  Now, I just inject the sides of my bum cheeks which I can do while lying on the bed.

Eventually, you will develop hard spots under the skin in areas you inject frequently.  Just be patient when inserting the needle and do it with a slight pulse up and down.  The less pain you have inserting the needles generally translates to a faster healing site. 

I alternate sides of my body for my am and pm shots.  In the morning I inject the left side, at night in the right.  Currently, I alternate between my chest, stomach, and bum bum.  If you have someone to inject for you, either the back of your arms or even back of your underarms also become an option.  The back of my bum bum worked well at first, but eventually became sensitive. 

Hang in there, it all gets more managable.  Remember never skip a dose because you develop resistance quickly to this medication.

Fuzeon has helped make me undetectable (<50) for the first time in my life.

Good luck and let us know if you have more questions.

--JJ

« Last Edit: December 01, 2006, 07:08:02 PM by jjmcm »

Offline Miss Philicia

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Re: Fuzeon: New to Fuzeon: Seeking Tips, Tricks and Guidance
« Reply #5 on: December 01, 2006, 07:50:55 PM »
If you're interested in trying the Biojector it seems Roche still has a trial going on:

http://www.roche-trials.com/patient/trials/trial110619.html
"Iíve slept with enough men to know that Iím not gay"

Offline allanq

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Re: Fuzeon: New to Fuzeon: Seeking Tips, Tricks and Guidance
« Reply #6 on: December 01, 2006, 11:30:09 PM »
I found it extremely difficult to get the Fuzeon solution out of the vial with a 30 or 31-gauge needle. One way to get around this is to carefully save the 3 cc syringe you used to mix the Fuzeon solution and use it to extract the Fuzeon solution from the vial.  For the actual injection, replace the needle on the saved 3 cc syringe with the smaller needle. (The needles are easily removed and replaced.)

Added benefits of the above technique: (1) It's a lot easier to do the injection with the shorter plunger on the bigger volume syringe, and (2) it's easy to fit all of the Fuzeon solution into the larger syringe. Be sure to keep the large needle sterile during the time between mixing and extracting the solution.

I learned the above technique from an RN at my doctor's office.

I found that one of the places where I get the fewest injection site reactions is on my chest, just above the nipple area.

I inject in my upper arm by pressing the arm against the back of a sofa or chair to gather up whatever fat I have in my upper arms.

My worst reactions are on my thighs, where I have very little fat.

Although many people find that using a 30 or 31-gauge needle helps, it didn't alleviate the ISRs for me. AI returned to the 27-gauge needles supplied with the kit. Everyone is different, so the smaller needles may work better for you.

Before doing the injection, make sure the needle is tightly attached to the body of the syringe. Give the needle a slight twist to tighten it. This can help reduce air bubbles.

These injections do become part of your daily routine, and once you do it a few times, you kind of do it on auto pilot.

Merck is starting an expanded access program for its new integrase inhibitor. I hope that eventually (maybe mid-2007) I can drop the Fuzeon and go on that drug.

I hope this helps.

Good luck,

Allan

« Last Edit: December 02, 2006, 01:38:04 AM by allanq »
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline jjmcm

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Re: Fuzeon: New to Fuzeon: Seeking Tips, Tricks and Guidance
« Reply #7 on: December 02, 2006, 09:29:10 AM »
Allan, I don't disagree at all with the ease of using the 3 cc syringe for your injection.  And, I am sure that a nice fresh needle on the end of it provides a sharper point to inject with.  However, I strongly disagree with reusing the syringe and needle. 

If you truly want to use a larger syringe and then swap out the needle; buy a box of them and whatever needle you would like to use.  The last thing any person injecting Fuzeon wants is an infection that could have avoided.

The RN in my doctor's office is one of two in Houston that instructs new patients for Roche in the proper administration of Fuzeon injections.  While he does tell people of alternate injection sites like the chest and bum, he would never instruct someone to reuse a syringe and use the same needle twice, particularly after the span of time required for the reconstitution of the Fuzeon.

I have not found it that difficult to draw the solution with the short insulin needles.  It does take some practice, but my friends with diabetes sometimes do it five times per day.

Just my two cents,

--JJ



 

Offline Chicago4Me

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Re: Fuzeon: New to Fuzeon: Seeking Tips, Tricks and Guidance
« Reply #8 on: December 02, 2006, 10:56:57 AM »
Thanks to everyone for their advice and tips.

I've sort of fallen into the following routine. While my RN was here instructing me, we reconstituted three vials. One for immediate use and the next two. As I used the last one, in the AM, I reconstitute two more. I draw up my needle for my current draw, and then reconstitute the next two. This seems to make it more time-manageable and gives me something to do while waiting for the reconstitution to finalize.

I do seem to be having trouble drawing the Fuzeon into the smaller needle supplied in the kit, but am learning to handle that.

Question. Does the Fuzeon have to be fully dissolved before placing into the fridge?

Thanks, again, for everyone's advice
Don't Cry Because It's Over... Smile, Because It Happened!

Offline jjmcm

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Re: Fuzeon: New to Fuzeon: Seeking Tips, Tricks and Guidance
« Reply #9 on: December 02, 2006, 12:36:02 PM »
I find that if you leave the vial on the counter at room temperature for about thirty minutes it will usually dissolve completely.  However, if it is put in the refrigerator before dissolving, it sometimes will still have particles in it when your remove it.  If that happens, just take it out and let it come to room temperature before injecting.  (about another thirty minutes)

When you draw the Fuzeon into the syringe, do so for very slowly.  Be patient, it might take a minute or two.  If the air bubble moves down from next to the needle to the plunger, press back gently until the air is pushed back into the vial.  With a little practice, you will have the technique down.

I also reconstitute two vials every morning when I wake up while dirnking a cup of coffee.  I leave them on the counter till they dissolve, injecting one and putting the other in the refrigerator until I need it in the evening.  If I travel, I usually just reconstitute them pm dose when I arrive at my destination.  If I am forced to inject at the airport, I reconstitute before I leave the house, I put it in a small cooler which I carry on to the plane.  (i always carry on all my meds)  I look for a "family" restroom where I can have privacy while injecting.

--JJ

Offline tcellsnaction

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Re: Fuzeon: New to Fuzeon: Seeking Tips, Tricks and Guidance
« Reply #10 on: December 02, 2006, 12:48:10 PM »
No....the fuzeon can be placed in the refrigerator as soon as you inject the water into the vial...I was told that by my nurse....I am also on the biojector so it makes the injection process a little more timely.

Best!   ;)
Live With Passion!

Wherever you feel most comfortable, this is your home....
Whoever shows you greatest love and kindness, these are your family....

Offline Christine

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Re: Fuzeon: New to Fuzeon: Seeking Tips, Tricks and Guidance
« Reply #11 on: December 11, 2006, 05:02:29 PM »
Hi,
I was on the t-20 trial, and then used it for close to three years. It does become habit eventually. I would mix two vials in the evening, use one for the pm dose, then use the other for the am dose.

You can place the vial in the fridge before fully dissolved.

I used the smaller gauge needles when self-injecting, and when my husband would inject we used the safety needles in the kit.

I found injecting in my rear end, and upper outside thigh area worked best. I would rub the injection site for a while, and sometimes would use the heating pad if the ISR's were really bad.

Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline dgls44

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!
« Reply #12 on: December 12, 2006, 02:15:26 AM »
~
« Last Edit: December 24, 2006, 01:13:07 AM by dgls44 »

Offline Rusty

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Re: Fuzeon: New to Fuzeon: Seeking Tips, Tricks and Guidance
« Reply #13 on: December 12, 2006, 05:14:32 AM »
Hi everyone

I stopped using Fuzeon at the end of last month after using it for 19 months. Yes it is a good drug and everyone that uses it should become undetectable very quickly. This drug is the biggest pain in the neck I have ever used, I was also fine using it for the first six months then every injection after that was a real bad ISR. I am so glad to have stopped it. I cannot see how it can fit into anyones daily routine unless you sit at home all day.
And I did use the smaller insulin needles as well which helped a little but not much. The Roche website on tips on how to make it easier is a load of rubbish and those methods they suggest are just obvious stuff that most people would have done anyway. If everyone that had to use this drug was overweight it would be easy to use, but as most of the peolple suffering from HIV are not fat it does make it more difficult.
I have been very dissapointed with Roches attitude to the patients using this drug, all they care about is selling the stuff and making money they dont seem to be interested in making things easier for people. I live in the UK and havent even seen a Bio injecter let alone be able to try one, and it looks like it will be a while before the UK even get a trial of this injecting system.  Not good enough!

Offline Catman

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Re: Fuzeon: New to Fuzeon: Seeking Tips, Tricks and Guidance
« Reply #14 on: December 12, 2006, 04:31:51 PM »
All the advice I've read on this thread is true. Even Rusty's reply. I began with Fuzeon on April 21st and 4-6 weeks later was undetectable. My viral load was around 85,000 to 125,000 but I don't remember. If I do, I'll edit this post with the correct count. It IS hard to fit into your daily routine, but I was able to do it at my job. Today I just came from a conference with a Roche representative and we asked her some questions regarding Fuzeon. Among her replies was that her company is still trying to make a once a week or a once a month dosage of Fuzeon. The molecule is very large and not easy to handle but they are trying. Also if you miss a dosage at a specific hour, try to make up for it BEFORE 3 hours go by. I've never been off schedule for more than an hour. I always do mine between 7:30 and 8:30 (morning and evening). It fits pretty well there.
Anyways, when I began my treatment my guide was "jjmcm". He is an expert on the topic and has vast experience with Fuzeon. You are lucky to have him giving his "hints" on this post. Do listen closely. Good luck with Fuzeon. It is not an easy habit to make but it's benefits outweigh the pain the shot can sometimes cause. I've turned into an expert injecting and sometimes do not even feel the needle going into my skin. The only place it has always been painful and swells a lot are my thighs. Oooo, they hurt and swell like a bee sting. I barely have fat there and that might be the main reason. My favorite areas are my hips and stomach. Each person reacts differently so maybe you will not have this problem. Beginning is hard so do feel free to continue asking questions on this same post. We'll be here for you.
Catman

Meow to the birds
Meow to the tree's
Meow to the end
of this dreadful disease...

Offline allanq

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Re: Fuzeon: New to Fuzeon: Seeking Tips, Tricks and Guidance
« Reply #15 on: December 12, 2006, 05:00:11 PM »
For an online Fuzeon support group, you might want to try the FuzeonSupport Yahoo group: http://health.groups.yahoo.com/group/FuzeonSupport/

I have learned that the problem for me with Fuzeon for me is not the injection method. It is the Fuzeon itself which causes the reactions. My doctor supports this view. It is borne out by the fact that I have done many other injections in the past of various medications, including a year-long trial of a drug called Nerve Growth Factor for neuropathy, and I never got the kind of severe reactions I get from Fuzeon. I have attended live Fuzeon support groups sponsored by Roche, I have had a nurse in my doctor's office demonstrate and watch me do the injections, and I've tried massage before, massage after, heat, cold, injecting slowly, smaller needles, etc., etc., etc. A few months ago an RN contracted by Roche come to my house to offer advice and observe my injection technique. None of these measures has made an appreciable difference in the painfulness of my injection site reactions.

I think everyone is different. Not everyone reacts to Fuzeon as I do. It's just like any other drug--some people can tolerate it and others can't. I stick with the Fuzeon only because I have no other options. Meanwhile, I'm on the list to participate in Merck's extended access program for its new integrase inhibitor. That program is supposed to start in my doctor's office in the next month or two. I hope I get into this program, for I'd like nothing better than to quit taking Fuzeon.

Allan


Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline Miss Philicia

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Re: Fuzeon: New to Fuzeon: Seeking Tips, Tricks and Guidance
« Reply #16 on: December 18, 2006, 05:46:06 PM »
not sure if this has been mentioned:

Quote
FDA decision delayed on Biojector for administering T-20 pending additional safety information
Simon Collins, HIV i-Base

On 12 October, Roche issued a press release relating to the timeline for the FDA decision on the Biojector 2000 system that is currently being studied in an open label expanded access trial in the US.

Several small studied reported that many patients found this needle-free device, which fires T-20 through the skin under pressure, reduced the severity of injection site reactions, and improved quality of life.

In the larger safety study, a small proportion of patients have experienced haemotoma and nerve damage, largely relating to when the device has been used in site with earlier scar tissue or near bone - both of which are not recommended as injection sites in the prescribing information for T-20.

Collecting additional data on these events will probably delay the FDA decision until early 2007.

It is expected that this will have a similar effect on regulatory decisions in Europe. Currently, unless they have been able to purchase this privately in the US, UK patients do not have access to the Biojector.

Source: Roche press release (12 October, 2006)
"Iíve slept with enough men to know that Iím not gay"

 


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