Needless Fuzeon/Biojector Study--1 year later

[RAB]

(Can't believe it's been a full year!   )

This week will conclude my participation in the Biojector study for injecting Fuzeon.  The study is primarily a "quality of life" study to see if using the Biojector can produce fewer/less severe injection site reactions (ISRs) than the needles.  If reducing the ISRs will improve adherence (not a problem for me), self image (a body riddled with huge red welts can be upsetting),  and ease of administration.

Approximately two weeks into the study, I posted the following comment:

Finally to everyone else. I was going to use this for 2 weeks before I really decided, but I don't need to. This thing absolutely (as Rick has already said) reduces the # of ISRs, when I do get them they are not as severe. I love this thing, it really is working out great.

At the end of the year when I have to give it back (nope--don't get to keep it) I'll be missing it a lot.

Here are my thoughts now:

The Biojector isn't a panacea  (negatives):

The actual injections can be painful (about 5 seconds only).

 I still get ISRs.  Sometimes those ISRs are severe.  (As severe as the needles.)

You can not use the Biojector in the chest (one of my favorite places to inject)


The first 6 months using the Biojector went very well for me.  There was no question that it was easy to use and the ISRs were significantly reduced in both severity and duration.

Then for some reason I don't fully understand the ISRs began to worsen.  There was less of a difference between the Biojector and the small gauge needle ISRs.

Overall I would now grade the Biojector with a "B" or perhaps a "B-". 

What I have been doing for the past 3 months is switching back and forth between the small gauge needles and the Biojector.  That seems to actually work out best for me.

I use the needles in my chest and abdomen (sometimes the butt) and the Biojector for the backs of my arms (partner does this) (which is  the only area where the Biojector is still my preference) and sometimes butt (which I can do easily).

I can continue to use the Biojector until Roche gains FDA approval for it's use with Fuzeon as long as I pay for the syringes (at a much reduced price of $25.00 per month--I believe Roche is making up the difference of about $100.00 if I understood the pharmacist correctly).

Once approval is granted then I would be given the option to buy the Biojector at a reduced price (I've heard varying figures as to what the thing is going to retail for--but it won't be cheap!) or return it to the pharmacy.

OR

I can simply return the Biojector now and resume needle only injections.

I'm thinking that's what I'm going to do. 

While I initially loved the Biojector, I'm not as impressed now.  Yes it has advantages but I'm no longer "in love" with it.

RAB   

(Who will decide next week for certain.)

[whizzer]

RAB,

I've only ever used the Biojector.  I've never tried the needles, but I went out and bought some half-inch 30ga 1cc syringes today so I can try injecting in my chest - those needles that come with the Fuzeon are just too damn long. 

What is your exact technique for injections?  Do you pinch the skin and go straight in with the needle, and how deep?  Or do you go in at an angle?  I know you shared the technique some time ago in the old forums but I can't remember what you did.  Do you massage the skin after?

Please share again.  I'm having to fly out of town and really don't want to haul that heavy-ass Biojector with me on the airplane, or explain to the TSA folks just what the heck it is.

Thanks a bunch,
Whiz

[RAB]

Hey Whiz:

When I inject in my chest I do pretty much as you asked.

I find an area where I can "pinch an inch", then I insert the tip of the needle in just far enough insure the Fuzeon is delivered subQ.  I never push the needle all the way in as then I'd be hitting muscle (as you know that hurts).

As far as do I come in at an angle or straight in.  I've done it both ways and can't really seem to tell much difference in terms of the ISR.  However, when you go straight in, there is a larger area for the Fuzeon to be distributed to because the pool has a 360 degree area as opposed to when you come in at an angle and the area is sorta smaller.  (Does that make any darn sense?)


Hope that helps.  Have a safe trip buddy.  (And yes the Biojector is "heavy-ass"  LOL!   )

RAB

(Note: even with the small gauge needles I'd stay the heck away from my thighs if I were you.  But there is that one soft area where the leg joins the torso.  I get swelling there sometimes, but rarely does the ISR hurt.)

[whizzer]

Thanks RAB

[blondbeauty]

When a fusion inhibitor in pill form?

[J.R.E.]

Hello Rocky,

I meant to respond to this post the other day, But want to thank you for keeping us updated, and you thoughts on the biojector. It is hard to believe that a year has gone by, I remember when you first started using it.




Thanks----------Ray

[whizzer]

Well, I injected (with a needle) in my chest last night.  Wow, what difference.  No pain at all with the injection.  The site is sore if really pushed on this afternoon (about equal to a Biojector site, or somewhat less) but no nodule present. 

Damn, why did I wait so long to try it that way?

Thanks again for the info.

[jjmcm]

Hey Whizzer, you need to be using the 31 gauge X 5/16" needles instead of the 30 gauge X 1/2" needles.

They are significantly more comfortable and will not go too far in when pushed all the way.  The 31 gauge needles are the short insulin needles.

Try them and you will not use anything else.

--JJ

[BillyPS]

Just got my Bioject today... Damn, this thing IS heavy.  Of course, that might work to my advantage if I have to lob it at a burglar or carjacker...
Aside from feeling like I've been kicked in the abs by a small horse, no ISR to speak of yet.
Am I going to have to have a little conversation with every TSA drone I encounter at airports?  I've been told that the thing looks like a weapon to most screeners when they scan your carry on stuff.  That should be fun.
Somehow I'm hoping that not having to tote and deal with two different syringes will offset the downsides, of which I'm obviously not all too aware of yet.
Gonna stay positive about this little experiment, or, well, at least as long as it remains convenient to do so.

[whizzer]

By the way, did anyone notice the Biojector in 'Batman Begins'? I want a black one like Batman has.   But I digress.

BillyPS, here's the link to the "acceptable medical devices" page on the TSA web site:

http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1059.shtm

It specifically mentions the biojector and CO² cartridges.  Print the page up and carry it with the Biojector when you fly, along with a copy of your prescription for it.  You can ask them to hand inspect it if you don't want to send it through the x-ray machine.

The Biojector hurts, but it's over real fast and you can do it in a moving car or train.

JJ, I will just have to make do with the 30ga 1/2 in ones for awhile since I bought a hundred of em - I just won't put em in all the way  (hmmm.......where have I heard THAT before?).  But I'll get the smaller one's next time.  Thanks for the reminder.

-Whizzer

[BillyPS]

Hey, thanks, Whizzer.  I guess I won't really know until the first time I try to fly with this thing, but I appreciate the link and the comment. 

[Miss Philicia]

Billy, if you travel with your biojector I'd recommend carrying a letter from your doctor explaining it.  I went to Europe 2 months ago and was stopped by security.  (Oddly NOT by TSA, but by European security!  Obviously our guys aren't doing their jobs as well as we think!)  Even with the letter there was a bit of confusion but eventually I got though.

[HIVworker]

There is a big problem with Fuzeon in pill form. Unlike other meds, which are small chemical molecules, Fuzeon is a peptide. Basically a small protein. There is no easy way of getting it to where it is needed without injecting it. If you make a pill, it won't be soluble enough and not enough will get into the blood stream to be effective. That's why they are looking into making better injectors and a formula with a longer half-life in the body - so you don't have to inject so frequently. It's a good inhibitor as they go, just very hard to administer.

R

[whizzer]

Not to mention that peptides are digested in the stomach.

[BillyPS]

What about a transdermal application?  Wouldn't that essentially accomplish the same thing as these injections?  Any thoughts, anyone? 

[Miss Philicia]

I got it!  how about a suppository?

[HIVworker]

Same problem as the stomach with the possible decrease in petidase activity. Proteins can survive the stomach and translocate into the blood stream but these appear to be specialized ones such as prions - that are inefficiently translocated and this still wouldn't get Fuzeon into the blood stream. I think they are toying with the idea of an inhaler though.

R

[BillyPS]

An inhaler?  Really?  Man, I'd go for that in a second!  Any links you could point me to that discuss this possibility?

[HIVworker]

Nope, sadly not. It's just an idea. Other peptides have been made into inhalers (insulin for example). Fuzeon is about 12 amino acids longer than insulin and the chemistry is quite different. I remember someone mentioning they heard it at a meeting, but I don't think it is even past an idea right now.

R

[whizzer]

The inhaler sounds like a great idea.  The only impediment will be the large size of the molecule - it is a pretty big long-chain polypeptide.

I'd be happy with a once-a-day injection.  I'd be REALLY happy with a once-a-week injection.

The injections aren't that bad.  The ISRs can be dealt with as well.  The problem is that there are so MANY of the injections that you run out of places to put the stuff.

[HIVworker]

I agree whizzer, it's about 1/3 as long again as insulin, but it is food for thought. I know for a fact they are trying to make a once-weekly dose. This comes straight from their website...

The goal for the next generation of fusion inhibitors is to improve upon the efficacy demonstrated by FUZEON, while increasing patient convenience via simpler, more patient-friendly administration, with a target of once-weekly dosing.

http://phx.corporate-ir.net/phoenix.zhtml?c=96240&p=irol-newsArticle&ID=815264&highlight=

R

[Miss Philicia]

I've been on Fuzeon with the the biojector for 3 months now.  This thread caused me some worry when someone mentioned the price of the biojector and I thought maybe I'd have to pay for it once my trail was finished.  I'm on a 6-month trial for it and I verified today that I get to KEEP my biojector when I'm done.  I suppose all I will have to pay for then are the needless syringes.  Really though, they need to make this stuff free otherwise they will never have many people taking this medicine.

[Miss Philicia]

I wonder how much trouble I will have traveling with my vials of sterile water in lieu of the terror plot from yesterday.  None of my fuzeon stuff has any prescription documentation as I get it all through the clinical trial office at my clinic.  Last time I travelled with it overseas I had them write a letter about it but I wonder if that will work now.  I'll check into this at some point this month and let people know.

[pricolatino]

Hello, it's my first time here.  I've been poz for almost 12 years, and just found out I'm resistant to a lot of the stuff out there.  My new doctor wants to put me on Fuzeon, and I had a lot of reservations but finally told him yes.

I wanted to thank all the ones that have posted information, it has been incredibly useful and has put me more at ease with my decision.  I still haven't decided between the needles or the biojector, so we'll see.  I hope the new combo meds with Fuzeon work better than what I've been using so far.  Thanks again.

[Miss Philicia]

ask your doctor about combing fuzeon with Prezista if you are resistant to PI's

[Soolip]

My IJR with needles were never severe, nor do I have a problem injecting myself. I was using insulin syringes, which is a big improvement over the ones that come with Fuzeon. My doctor told me that ISRs are less severe with a Biojector, so I signed up for a study. I have been using the Biojector 2000 for 2 weeks now.

With needles, I would develop small, mostly painless lumps, maybe about the size of a quarter. Sometimes they would be red and last about a week. I never carried more than 4 ISRs on my body at one time.

The Biojector is easy to use. It also hurts like hell -- so much so that there have been occasions when I felt like I didn't want to use it, though I have never skipped a dose. While the ISRs last only 3 or 4 days, they are much more severe. The reactions are horribly painful, swollen, red and HUGE -- about a 6-8 inch circle. I now carry 6-8 ISRs on my body at one time. I don't think it's the medicine. I think that the BIojector is traumatizing my body. It's damn punishing to use, and I'm already sick of it. I don't know what to do, and this study lasts two months.

Everyone else out there seems to be raving about this thing. Am I the only one with a problem?

[David84]

I read this yesterday and after 3 years never thought to inject my chest.. last nite and this morining I did and what a difference!! Hardly a reaction.. thats a blessing in and of itself.  I was beginning to think I was running out of real estate but now have a whole new sub(no pun intended) to develop!!!  Thanks so much..

David

[Miss Philicia]

Soolip:  I've found that if you press the end of the syringe to much into the skin with the Biojector that causes more painful areas.  Other than that there's not much rhyme or reason to it.  I get some of my worst reactions on my scrawny thighs but then one day I won't have any reaction there.  My site reactions have only gotten worse the longer I've been on it as I think your body builds up scar tissue or something.  I've been using it for 4 months now.

David84:  you used a Biojector on your chest?  I don't think that's an area that is recommended. 

[David84]

Philly267: I used a needle like whizzer suggested. I need to give Biojector some thought.

[Miss Philicia]

Check with your doctor about the biojector studies going on right now.  That's what I'm on and as such I get to keep my the biojector when the study is completed in November (6 month study).  I think as it is if you go that route without being on a study the biojector is several hundred dollars to purchase.

[Soolip]

In Los Angeles, I've been told the Biojector is about $1500.00. It would be cheaper for someone to just "get over" using a needle. If Diabetics can do it, so can we.

BTW, my viral load was about 30,000, and my TC were >100  when I started Fuzion. I was re-tested two weeks later, and was undetectable. This is an AMAZINGLY POWERFUL medication. In five months I have stayed undetctable and my TCs float between 500 and 600. I was deathly ill with all kinds of resperatory infections for a good 6 months before I went on Fuzeon. I feel like I've come back from the dead. A couple of sticks (or biojects) a day is a small price to pay for good health and a quality life.

[Miss Philicia]

Agreed.  I've had fairly miraculous results though my cd4's weren't shoddy to begin with, just my VL had NEVER ever been undetectable so they wanted to try this.  But I also am on Prevista at the same time so I'm not sure which has made my numbers go up the most.  I'd be curious to see what would happen if I went off the Fuzeon and just stayed on Prevista and my other stuff.  I guess I can always go back on Fuzeon.  My biggest gripe with it is that it's a royal pain in the ass to travel with Fuzeon.  I've done it overseas twice now in the last 6 months and this last time my flight was over 12 hours and it's not like pills which I can pop on the plane.

But yes, if your numbers royally suck it's definitely a lifesaver and should give anyone a glimmer of hope in that situation.  Congrats on your great numbers.