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Author Topic: Falling cd4s  (Read 2534 times)

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Offline julius

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  • Posts: 11
Falling cd4s
« on: October 22, 2006, 01:17:23 PM »
Is it common for cd4s to drop with the switching to a new regiman?
My daughter was taken off of fuzeon because of side effects and started on another regiman which includes norvir and sustiva. Her cd4 went from 254 to 150 I am so worried I feel like I'm in a constant state of panic. She has been on the new combo about 3 months is it at all possible for the numbers to go up or what do we do?
Any answers would be soooo greatly appreciated, I don't know how much more of this I can take.

Offline newt

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Re: Falling cd4s
« Reply #1 on: October 22, 2006, 02:06:10 PM »
For some reason Fuzeon produces nice, higher CD4s, no-one really knows why.  However, if the combo works it is most likely that in time her CD4 will rise.

Norvir + Sustiva, interested to know the combination

- matt

Now playing: K T Tunstall, Through the Dark
"The object is to be a well patient, not a good patient"

Offline Rusty

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Re: Falling cd4s
« Reply #2 on: October 22, 2006, 04:41:03 PM »
What side effects did your daughter experiance while using Fuzeon? Just curious as I am taking that at the moment as one of my combos, I am switching and  dropping the Fuzeon at the end of November.

Rusty

Offline julius

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Re: Falling cd4s
« Reply #3 on: October 22, 2006, 06:47:26 PM »
Hi Rusty,
She had injection site reactions that usually became infected and then she would end up on antibiotics. The doctor decided she wasn't achieving that much benefit from it compared to the hassle.
May I ask why you decided to go off of it? Are you also drug resistant?
He did say there's a new one that has been approved for resistance but he's doing a genotype first and keeping her on this regiman until he decides what to do.

Offline julius

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  • Posts: 11
Re: Falling cd4s
« Reply #4 on: October 22, 2006, 06:51:45 PM »
Thanks Matt for a little bit of encouragement!
She is also on other drugs along with those two meds ,I just can't remember the names because of the ever growing list of what she has been on.

Offline Rusty

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  • Posts: 28
Re: Falling cd4s
« Reply #5 on: October 23, 2006, 06:47:56 AM »
Hi Julius

I have been on Fuzeon for 18 months, but am fed up of the injection site reactions , lumps and painful bumps around the areas I have injected into. I even use the small insulin needles. You cant knock it though because it has been a good salvage therapy for me. I have been positive for 20 years and have tried most drugs but Fuzeon isnt something I am prepared to continue taking when I have other options that are easier to take.


Offline allopathicholistic

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Re: Falling cd4s
« Reply #6 on: October 23, 2006, 07:41:01 AM »
from thebody.com - chat transcript on Fuzeon - Click here

Offline julius

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  • Posts: 11
Re: Falling cd4s
« Reply #7 on: October 23, 2006, 07:22:21 PM »
Hi Rusty,
I hope I'm not asking too many questions, My daughter has also been pos. for 20 years I unknowingly passed it to her through birth, I got the dreaded phone call from the blood bank after she was born.
Anyway my question is, are you also becoming resistant to meds? Do they give you hope that there is something else to use besides fuzeon?
Our Doctor mentioned that there was a new one approved but than mumbled something about needing another one to go with it.
Sometimes I can live with this and only see the bright side but this week sure isn't one of those times!
Thanks for listening to me babble!

Offline Rusty

  • Member
  • Posts: 28
Re: Falling cd4s
« Reply #8 on: October 24, 2006, 06:52:13 AM »
Hi Julius

In answer to your question I am not resisent to my meds, well not yet anyway :P  When I began the combo I am taking at the moment which is Fuzeon, Tipranavir. Ritonavir, Tenofavir, Combivir my viral load was a few hundred thousand and my CD4 count was about 43. It is now CD4 160 viral load undetectable. Not mind blowing I know but i have also been taking antibiotics for TB for the last 12 Months which hasnt helped the situation. I finish antibiotic course in 5 weeks time then I am starting new meds which will be TMC 114, TMC 125, Ritonavir, Tenofavir, Combivir. I cant wait to be honest.
There should be a good alternative for your daughter, there are a few new drugs licenced out now and a few more very soon , if I was you I would talk to the doctor about it. Remember you dont always have to agree with what your doctor says if you think something else would be a better alternative then suggest it.
Try not to worry it can only get better.

Rusty

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Falling cd4s
« Reply #9 on: October 24, 2006, 07:19:22 AM »
Hi Julius and Rusty,

Have you looked into the Fuzeon needleless bio-injector?

Check out this thread on the bio-injector.

Hope that is of some help.

Ann

::edited to add the following link::


Thread on Fuzeon injection site problems
« Last Edit: October 24, 2006, 07:21:55 AM by Ann »
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

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Offline Rusty

  • Member
  • Posts: 28
Re: Falling cd4s
« Reply #10 on: October 24, 2006, 08:36:02 AM »
Hi Ann

I am in the UK and have absolutely no chance of getting a bio injecter, Roche hasnt bothered with the U.K with any trials what so ever. I have tried to get one just to try it and see if it is better before I stopped using Fuzeon. My pharmacist has spoken to Roche reps about this and still they say it will be 12 months at least before the UK get any. Not very good for such a big drug company.
I am dissapointed with there attitude.

Offline jjmcm

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  • Posts: 78
Re: Falling cd4s
« Reply #11 on: October 24, 2006, 10:56:39 AM »
Rusty, I don't whether either the expanded access of the Merck-0518 integrase inhibitor (or trial of the GS-9137) is available there in the UK.  Given your current stats, I would be hesitant to give up the Fuzeon without getting one of them.  While the TMC 125 might be a good agent, it is not even in the same ballpark as far as strength as the integrase class.  Personally, my current plans are to give up the Fuzeon next year only when I can get one of the integrase inhibitors.  That way I can maximize the benefits of the TMC 114.

I think with the integrase you might very well see a sizeable jump in your CD4's.  Other people I know that are on the Merck-0518 have experienced that.  It also seems to have few side effects.

BTW, have you tried injecting the Fuzeon in alternative sites like your chest and bum?  Most of the people I know that have used the BioInjector are now back on the insulin needles. (31 g X 5/16"- 1cc) - short

Good luck...

--JJ

Offline Rusty

  • Member
  • Posts: 28
Re: Falling cd4s
« Reply #12 on: October 24, 2006, 12:55:45 PM »
Hi Jjmcm

I have injected Fuzeon for 18 months now and I am very treatment experianced over the 20 years of infection. Most drugs are available in the uk even trial drugs if they are needed on compassionate grounds. With regards to the injections most people will find in time that some areas will just not be able to tolerate the protein being injected due to tissue damage under the skin, ie hard lumps that never disappear.

I have heard it all about injecting where to, how to , massage, ice packs , hot compresses, insulin needles and still I get really bad ISR 's . It has got a lot worse since I began the treatment the first six months was a breeze, not now though. Every other injection becomes a really painful lump for days. I am 31 years old and this drug is battering my body, yes it does work and works well but quality of life is far more important to me.

As for the new drug combo I will let you know how things  map out, I dont think my consultant would be up for the change if it was as poor as you say.

Thanks for your input

Rusty

Offline julius

  • Member
  • Posts: 11
Re: Falling cd4s
« Reply #13 on: October 24, 2006, 08:26:07 PM »
Rusty,
Thanks for your reply and naming some meds. Sometimes when I'm there with her[daughter] I'm kind of lost as of what questions to ask the doc. Sad to say sometimes the info I read on the drugs goes right over my head!
I've been undectible for over 10 years with cd4s over 1200 how I wish they could give her my labs!
Anyway, thanks for your help and good luck with your new meds, after watching my daughter go through the injection site hell I know exactly what you are going through!We hope the best for you!

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Falling cd4s
« Reply #14 on: October 25, 2006, 12:39:38 AM »
Combo of Fuzeon and TMC 114 (Prevista) has worked wonders for me.  I'm also using the biojector and you DO get site reactions from that too, about half of the time.  I've been on this for 6 months now.  I'd never had an undetectable VL for 15 years until I went on this, and yes my CD4's have sky rocketed as well.
"Iíve slept with enough men to know that Iím not gay"

 


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