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Author Topic: Friend diagnosed, some advice appreciated  (Read 2835 times)

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Offline skips

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  • Posts: 17
Friend diagnosed, some advice appreciated
« on: November 23, 2011, 03:37:18 AM »
I'll skip the why and how, but a friend of mine has been diagnosed as positive. I would like to help him if at all possible. He struggles to deal with the news, so I want to find out about clinics and treatment.

His doctor wants to start him on Sustiva and something else, he can't remember the name of the second. I understand this is an old-ish drug? Does this drug have any neurological side effects?

Also, is anyone able to recommend a good clinic in London? What is the best clinic?

Does anyone know of a good clinic available in the evenings or at the weekend?

Thank you

Offline mecch

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  • Posts: 11,771
  • red pill? or blue pill?
Re: Friend diagnosed, some advice appreciated
« Reply #1 on: November 23, 2011, 04:29:28 AM »
Don't know about your London situation.

Sustiva and truvada are the components of Atripla.  So you can google any one of those words but you will get a lot of results with "Atripla".

Atripla is still considered "first line" very useful and potent therapy.  The molecules may have been around awhile but in my opinion its not constructive to worry about this being "old-ish."

You can look in this forum for experiences of people having CNS side effects from Atripla.  Most people don't but a few do.  Also, "sustiva crazies". 

Hey be careful worrying about the HAART, you know, "on behalf of" your friend.  Please don't go explaining horror stories to him about HAART if he is struggling to come to terms with his status.   His physical need for, and psychological readiness for, and eventual adaptation to, HAART really has nothing to do with you - it will all happen between his body, his mind, and the doctor's expert opinion.   

Not saying to butt out, just kid gloves please.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline newt

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  • the one and original newt
Re: Friend diagnosed, some advice appreciated
« Reply #2 on: November 23, 2011, 03:51:14 PM »
Hello

Quote
His doctor wants to start him on Sustiva and something else, he can't remember the name of the second. I understand this is an old-ish drug? Does this drug have any neurological side effects?

Yes for about 20% of people the central nervous system side effects will result in a switch in combination within 2 years. Nearly everyone gets some of these effects in the first few weeks. If this is a concern press for something else ... in the UK you can just say no, the phrase is "I do not consent to treatment with efavirenz because I believe the side effects outweight the benefits" (full stop, doc).

However, it is a good first-line drug and still very much a drug of choice for first-line treatment.


Quote
Also, is anyone able to recommend a good clinic in London? What is the best clinic?

Some of the best clinics in the world are in London, depends which is more convenient, and which clinic's style/environment/location/schedule suits the person. All the good ones have at least one evening clinic and efficient walk-in bloods, home delivery of meds, telephone/email results etc.

Bang in the middle of town (off Tottenham Court Rd) there's Bloomsbury Clinic at the Mortimer Market Centre<< my clinic

In central west London there's the Chelsea and Westminster Hospital in Fulham Rd which also has a branch in Soho offering the full range of routine HIV care in Dean St

Central and west there's the  Jefferiss Wing, St Mary's Hospital in Paddington

Just over Westminster Bridge there's the Harrison Wing, St Thomas' Hospital

North a bit there's the Royal Free in Hampstead (where they invented the viral load PCR)

East from the City there's the Royal London Hospital  in Whitechapel

Just over London Bridge there's the Lloyd Clinic at Guy's Hospital

Further south east there's Kings in Camberwell

South west there's St George's Hospital inTooting

Outer London has more but the central ones have the fuillest range of services (and an excuse to go into town).

These incidentally are listed in my personal order of preference, which is unscientific cos they's all good.

Hope this helps

- matt

"The object is to be a well patient, not a good patient"

Offline skips

  • Member
  • Posts: 17
Re: Friend diagnosed, some advice appreciated
« Reply #3 on: November 26, 2011, 11:09:00 AM »
Hello

Yes for about 20% of people the central nervous system side effects will result in a switch in combination within 2 years. Nearly everyone gets some of these effects in the first few weeks. If this is a concern press for something else ... in the UK you can just say no, the phrase is "I do not consent to treatment with efavirenz because I believe the side effects outweight the benefits" (full stop, doc).

However, it is a good first-line drug and still very much a drug of choice for first-line treatment.


Some of the best clinics in the world are in London, depends which is more convenient, and which clinic's style/environment/location/schedule suits the person. All the good ones have at least one evening clinic and efficient walk-in bloods, home delivery of meds, telephone/email results etc.

Bang in the middle of town (off Tottenham Court Rd) there's Bloomsbury Clinic at the Mortimer Market Centre<< my clinic

In central west London there's the Chelsea and Westminster Hospital in Fulham Rd which also has a branch in Soho offering the full range of routine HIV care in Dean St

Central and west there's the  Jefferiss Wing, St Mary's Hospital in Paddington

Just over Westminster Bridge there's the Harrison Wing, St Thomas' Hospital

North a bit there's the Royal Free in Hampstead (where they invented the viral load PCR)

East from the City there's the Royal London Hospital  in Whitechapel

Just over London Bridge there's the Lloyd Clinic at Guy's Hospital

Further south east there's Kings in Camberwell

South west there's St George's Hospital inTooting

Outer London has more but the central ones have the fuillest range of services (and an excuse to go into town).

These incidentally are listed in my personal order of preference, which is unscientific cos they's all good.

Hope this helps

- matt



Thank you very much for your reply.

CNS side effects are a big no no for him due to his job, I'll pass along the information. Do you know of any drugs without CNS side effects?

The list of clinics is great, I'll find out which has evening and weekend opening and pass them along. Thank you for making this easier for him.

He has asked me to research this with him to help, I am not pushing any agenda - his choices are his own.

Online zach

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  • not fade away
Re: Friend diagnosed, some advice appreciated
« Reply #4 on: November 26, 2011, 07:26:01 PM »
newt's got you well covered on the ground

Atripla is still considered "first line" very useful and potent therapy. Please don't go explaining horror stories to him about HAART if he is struggling to come to terms with his status.   His physical need for, and psychological readiness for, and eventual adaptation to, HAART really has nothing to do with you - it will all happen between his body, his mind, and the doctor's expert opinion.   


mecch gave some wisdom there, i would encourage you to reread the sections i've highlighted, they are worth remembering.

for about two weeks, i had some very strange dreams, but that all went away after about a month. in less than a year, i was undetectable. that IS the goal. i'm now a little over one year on atripla, and tolerating it well. there are other facets of being positive that are much more difficult to wrap your head around than side effects.

be an advocate, but be careful you're NOT sending a message to your friend that says "avoid atripla due to possible CNS side effects"

you are already doing the most important thing that you can do, you are being a friend. thank you for that, with all my heart! at the end of the day, that will be what matters most between you two. i know, but can't put into words well enough, how much that will mean to him.
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline mecch

  • Member
  • Posts: 11,771
  • red pill? or blue pill?
Re: Friend diagnosed, some advice appreciated
« Reply #5 on: November 26, 2011, 08:18:06 PM »
Well, I think its useful to know that the CNS threat is there.  (My HIV specialist poo-poo'd my reports and complaints a little too long, imo.) On the other hand, there are all sorts of reasons a specialist might recommend one or another starting therapy. 

Just keep everything in perspective and know that if you have access to doctors and ready and affordable drugs, there are different options down the road if some problem presents.  That's the calming, big picture.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline skips

  • Member
  • Posts: 17
Re: Friend diagnosed, some advice appreciated
« Reply #6 on: November 28, 2011, 04:11:46 PM »
newt, my friend has a question.

Why do you have the list in the order you do? What makes you consider one better than the other?

Thank you

 


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