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Poll

Do you think info on drugs & side-effects is easy to find from the forums?

Yes
16 (64%)
No
3 (12%)
Didn't know there was any
1 (4%)
Yes, but would like view from forum members on the drugs too
4 (16%)
No, and would like view from forum members on the drugs
1 (4%)

Total Members Voted: 25

Voting closed: November 11, 2006, 02:45:36 PM

Author Topic: Do you think info on drugs & side-effects is easy to find from the forums?  (Read 4958 times)

0 Members and 1 Guest are viewing this topic.

Offline newt

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People keep asking the same questions, esp. about first-time combos.  Does this mean the info on drugs etc is difficult to find from the forums? Or not? Views please. Or maybe it's just some old posts which would answer new questions need keeping at the top of the page...

Just asking cos I am (a tad) fed up of typing the same answers n my sense of duty's running a bit thin. The questions are not complex and other people can answer them very well (maybe even the, ahem, paid staff).  Plus the info - or some of it anyway - is elsewhere on AM. Maybe I shouldn't jump in so quickly eh? ... but when a post goes unanswered for a few days and someone's clearly anxious a reply/signpost is demanded I think.

This thread promted by (another) post on Atripla side-effects.

- matt
« Last Edit: October 12, 2006, 05:30:17 PM by newt »
"The object is to be a well patient, not a good patient"

Offline Ann

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Hi Matt,

I think people just want to hear personal feedback. If you want a taste of repetitive questions, just look at the Am I forum. These people even admit to reading every other thread in the forum, but yet they want that personal feedback on their own situation.

You can always do what I do - I have a database of cut and paste answers. Sometimes they get the straight C&P, other times I need to tweak it slightly to fit the situation.

And by the way, I'm not ~ahem~ "paid staff" either.

Ann
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HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline penguin

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there is a valid point about  people wanting/needing individualised responses - something about someone listening, and caring, i think.

that said - could we perhaps have some stickies(as in this forum)  at the top of the page, links to the sustiva tips, or side effect lessons, or dosage guidelines etc...? so people can go straight to the info they need, rather than having to hunt around a (possibly unfamiliar) website...

kate

Offline Cliff

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I think the design is fine.  It seems relatively straight-forward.  People ask the same questions, (over and over again), because that's what people do.  I bet you a majority of folks in the forums haven't read the drug information in much detail.  I think most folks just run straight to the forums and post their question.  Nothing wrong with that.  Maybe we should just provide links to where the information has been discussed elsewhere in the forum (or website) and give them a snack or two.  Postive reinforcement is key.

Not sure I completely understand the last two options.  If it suggest greater user involvement in the information, I would say two thumbs up to that.  I think it would be good if the operators could somehow include personal stories/observations with some of the information.  For example, we always have discussion on safer sex between two positive individuals.  Why not have a personal perspective from someone living with HIV on how they navigate safer sex with their partner.

Offline Just John

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Hi Matt.

Although I can understand you questioning the ease of info. availability, I have to say that I think that the site is already very well laid out with all of the relevant (and not so relevant) information easily accessible from the "buttons" at the top of the page. I learned a lot about many aspects of this bug and it's treatments and associated illnesses from nearly two years of reading this and a couple of other sites before I "went public" on the forum.

There are some people, however, (and I should know I've dealt with the general public all of my working life), who are unable or just unwilling to read what is given to them, there are also those who either can't comprehend the information or relate it to their own situation and please don't forget those people who find cyber-communication strange.

A lot of people will be overwhelmed by the whole scenario of HIV when newly or recently diagnosed, or just about to start med's and I can understand their relief and impatience when they find a site on which they can ask "real people, real questions", with the knowledge that they have already been through the same traumas and can give a personal view.

I think that some people just need more patience, and the "personal touch" than others which explains a lot of the repeat posts.

John.
Some cause happiness wherever they go; others, whenever they go.

Offline J.R.E.

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Hello Matt,

I think things are are put together very well on this site, and it is very easy to navigate through it.

As Ann stated, I believe that most people that first come here to the site, want "personal contact".

I will refer almost all people to the lessons or drug section, depending on the questions / concerns that arise, or  that they need answered.

I do understand what you mean about repetitive questions. And it does get a little frustrating at times. As long as newly infected people continue coming to this site, there will always be those repetitive question. If the same individual keeps asking the same questions, that when I draw the line. People will have to take on the responsibility of thinking for themselves. I won't do someones homework... I have enough for myself to do.   If people don't educate themselves about this virus, they will ultimately be heading for trouble.


Just my thoughts------Ray
Current Meds ; Viramune, Epzicom, 20mg of Atorvastatin, 12 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 1/23/17

Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 03/06/17,  t-cells are at 347,   Viral load remains <40

Lymphocytes--2967

Current % is at 12%

  
 65 years young.

Offline HIVworker

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  • HIV researcher
Ann said exactly what I would have, esp about the "I am infected?" forum. It can cause burnout. My advice is to link to the drug interaction lesson and get them to come back with specific questions.

Rich
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline alisenjafi

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Along time ago in a forum far far away, someone wrote for the umpteen a question that i responded to by saying if you want to know about us go back and read the old posts. I say the same thing here. Just alone in the side effects how many deal with atripla!

Johnny
« Last Edit: October 12, 2006, 09:55:24 PM by alisenjafi »
"You shut your mouth
how can you say
I go about things the wrong way
I am human and I need to be loved
just like everybody else does"
The Smiths

Offline joemutt

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I think it is generally easy to find info on meds,
but I think people want some re assurance
or feedback from people who actually took the medicine
and that can be more useful than the info in the 'drugs section'
which I find not precise enough conc side effects;
and some people are isolated geographically or otherwise
and want to reach out to the experience of hiv colleagues;
we are millions to take meds but
each first time or each change of meds signifies a big change for the individual
involved. I had recently asked for info on the forums and the feedback gave me more
info than my dr had given me, so I feel more sure to make the change.
And I'm happy and grateful to find that info here. Tx.
« Last Edit: October 12, 2006, 11:32:38 PM by joemutt »

Offline David_CA

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Matt, I know what you mean about people asking the same questions.  I deal with repetitive questions at work, too, and it can be annoying.  I think that sometimes the 'Lessons' and info on various drugs can be pretty clinical in nature.  Often, people are nervous, apprehensive, etc and need a more personal touch to their info.  Also, they sometimes just want reassurance, like others have mentioned.

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline bobik

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Re: Do you think info on drugs & side-effects is easy to find from the forums?
« Reply #10 on: October 13, 2006, 06:14:09 AM »
Hi Newt,

I guess people just want to share what they're going through and feel that they are not alone.

I recognise that it is not nice to give the same answers all the time. But if you wait with replying for 24 hours, most of the time other people have already given all the information that is wanted.

Coen
Coen Honig at Facebook

Offline David84

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Re: Do you think info on drugs & side-effects is easy to find from the forums?
« Reply #11 on: October 13, 2006, 08:26:42 AM »
This issue is a bit complex. I am stuck with what to reply on this.. but after reading responses to your question there is one concern how  members will feel reading this.. Ie, then why should I bother asking questions? I know for myself I will be more cautious in the future.

David

Offline newt

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Re: Do you think info on drugs & side-effects is easy to find from the forums?
« Reply #12 on: October 13, 2006, 04:10:10 PM »
David, I really have no fixed view on this yet, I am interested to see what other people think.  The drug info on AM is good, but it's not personal, and most often, esp. when starting treatment, people want (I think) some kind of contact/reassurance.  I have no intention of stopping answering Qs about treatment, and the basic starting treatment Qs are the meat n drink.  Indeed other people answer more of these than me, and very well too. But something worries me, like, what ifs? mainly, and perhaps sometimes a point (like Atripla) comes up that demands some kind of more considered (editorial, moderator) intervention. 

- matt
« Last Edit: October 13, 2006, 05:11:51 PM by newt »
"The object is to be a well patient, not a good patient"

Offline fearless

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Re: Do you think info on drugs & side-effects is easy to find from the forums?
« Reply #13 on: October 13, 2006, 04:42:45 PM »
People are/can be lazy Matt
Be forgiving, be grateful, be optimistic

Offline J.R.E.

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Re: Do you think info on drugs & side-effects is easy to find from the forums?
« Reply #14 on: October 13, 2006, 05:41:51 PM »
I know for myself I will be more cautious in the future.

David


Hi David,

I don't believe it was the intention of this post, to make people feel uncomfortable or cautious about posting. I can only tell you, as has been stated there is a lot of good information in the lessons, and on all links, on the top left corner of this page.

I also will always try to answer questions, if I believe I have the answers. I can assure you, I don't have all the answers. I have lived with this virus for 21 years, and I know there will come a time, when I will be asking plenty questions also.

So please, don't feel you have to be" cautious "about asking questions. If you can't find them on the links provided, or there is still something that you have difficulty in understanding, don't ever hesitate to ask !!


Take care---- Ray
Current Meds ; Viramune, Epzicom, 20mg of Atorvastatin, 12 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 1/23/17

Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 03/06/17,  t-cells are at 347,   Viral load remains <40

Lymphocytes--2967

Current % is at 12%

  
 65 years young.

Offline DingoBoi

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Re: Do you think info on drugs & side-effects is easy to find from the forums?
« Reply #15 on: October 13, 2006, 07:49:37 PM »
i think the drug and treatment info is very comprehensive, but alot impersonal.   It just seems technical and even reading it, at a time of great stress, can go over your head a bit.   I think most want a 'double-check' of their situation.  Getting to know the initial combos (nuke, non-nuke, pi) can be a bit of a challenge.. it still confuses me and even I can't name what categories my drugs fit into off the top of my head.  Of course, I also flunked geometry because I just couldn't grasp sign, cosign, tangent or how it is relative to each other or even why it would be important to me ever in my life.   That's what engineers are for :P and that is what people like you, newt, are for, who have a great grasp on treatments that can still boggle my mind.   

Offline Eldon

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Re: Do you think info on drugs & side-effects is easy to find from the forums?
« Reply #16 on: October 13, 2006, 08:57:18 PM »
Hey Newt,

I truly beleive that the information provided is very easy to find and it is informative to the reader.



Make the BEST of each Day!

Offline Maestro

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Re: Do you think info on drugs & side-effects is easy to find from the forums?
« Reply #17 on: October 13, 2006, 10:14:55 PM »
Not only do I think people want personal feedback, I think people with personal feedback to give are happy to give it.  I know the few times I have been able to lend a hand someone in my short experience here it has made me feel a little better about this whole thing.


Offline carousel

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Re: Do you think info on drugs & side-effects is easy to find from the forums?
« Reply #18 on: October 14, 2006, 07:24:10 AM »
.
« Last Edit: February 15, 2007, 11:56:18 AM by carousel »

Offline alisenjafi

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Re: Do you think info on drugs & side-effects is easy to find from the forums?
« Reply #19 on: October 14, 2006, 10:07:26 AM »
This issue is a bit complex. I am stuck with what to reply on this.. but after reading responses to your question there is one concern how  members will feel reading this.. ie, then why should I bother asking questions? I know for myself I will be more cautious in the future.

David
I think you are missing the point. it is not about asking  questions, which we all do, it's thirty different posters asking the same one, especially right after each other, ie Sustiva dream posts  ;)
Why not just add to the existing post.
"You shut your mouth
how can you say
I go about things the wrong way
I am human and I need to be loved
just like everybody else does"
The Smiths

Offline Iggy

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Re: Do you think info on drugs & side-effects is easy to find from the forums?
« Reply #20 on: October 14, 2006, 10:58:49 AM »
.
« Last Edit: January 12, 2007, 08:15:53 PM by Iggy »

Offline gerry

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Re: Do you think info on drugs & side-effects is easy to find from the forums?
« Reply #21 on: October 14, 2006, 03:54:38 PM »
I don't mind answering questions directed specifically at me for as long as the person asking realizes that:

1. They may get an incorrect answer.
2. Their question may not be answered timely (e.g. if the person being asked is not available).
3. Their question may not be answered at all (like if the person being asked is not available for an extended period of time; for instance, I took a break for almost a month while getting moved and not having reliable internet access so I have very little clue what the past 3-4 weeks here have been like).

I do not necessarily agree that questions directed to specific persons should be kept in PMs because a lot of these have great learning value not only to the people direcly involved in the question-answer communication.

Offline newt

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Re: Do you think info on drugs & side-effects is easy to find from the forums?
« Reply #22 on: October 14, 2006, 05:13:19 PM »
Hear, hear!- matt
"The object is to be a well patient, not a good patient"

Offline J.R.E.

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Re: Do you think info on drugs & side-effects is easy to find from the forums?
« Reply #23 on: October 15, 2006, 04:54:24 AM »
Hello Gerry,

It's great to see you back ! Hope you are all settled in now, with your move.


All the best------Ray
Current Meds ; Viramune, Epzicom, 20mg of Atorvastatin, 12 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 1/23/17

Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 03/06/17,  t-cells are at 347,   Viral load remains <40

Lymphocytes--2967

Current % is at 12%

  
 65 years young.

Offline David84

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Re: Do you think info on drugs & side-effects is easy to find from the forums?
« Reply #24 on: October 15, 2006, 10:04:42 AM »
First off.. my apologies.. I have thought about this since Friday morning. I know you all are doing great work out there helping others and I do understand the various points being made. As time goes by you will find my fingers sometimes act quicker than my mind! Hope I didn't offend anyone too bad..

David

Offline gerry

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Re: Do you think info on drugs & side-effects is easy to find from the forums?
« Reply #25 on: October 15, 2006, 01:11:27 PM »
Thanks, Ray.  Hope the Lyrica works for ya!

David, I don't think you need to apologize.  Your comments were valid in light of the fact of the original question and needed to be clarified.  I don't think Matt's intent was to stifle communication.  It's more like how can info be disseminated to ease the need to ask/respond to repeat questions. Not an easy task, really, since people come to the forums at different times, with different experiences/knowledge base/background, and different needs.

Offline wellington

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Re: Do you think info on drugs & side-effects is easy to find from the forums?
« Reply #26 on: October 15, 2006, 01:50:23 PM »
I find that the info on drugs and combos is quite available. Sometimes I struggle to find side effect postings - of meds and just HIV in general - even after extensively searching the treatment forum.

Would a database be helpful wherein the membership, particularly those taking meds, might enter info about what cocktail was started and what is presently being taking, inclusive of lab info? Possibly more elaborate than any individual volunteer would want to tackle, but there is a good deal of posting about meds and labs in general. One need only read the signature lines to glean the importance of these things to our general population.

Offline newt

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Access to drugs info on AM etc - Newt's thoughts...
« Reply #27 on: October 17, 2006, 03:44:14 PM »
Well , my thoughts...

The drugs info is easy to find, although the drug class thing is a bit of bamboozle. (The only improvement I would suggest is to put the A-Z list of all drugs link first in the list, above the links to drug classes, etc).

It is fine, dandy and inevitable that Qs will be repeated, esp. as answers/posts drop down a forum listing.  And starting treatment is always a unique experience with unique concerns.

I (& others I guess  :)) like answering Qs about treatment, esp. more technical ones, but am happy to answer the basic ones too.  Indeed, the basics is the most important really. However, people need to realise, enthusiasm, time and priorities vary according to what else is on in life, and it's not a dead cert that people who are interested in posting on treatment will/are around to do so.

I dislike to see a treatment related post which is full of anxiety etc, go unanswered, esp. if it's about starting treatment.  Often more important here is for some kind of response, acknowledgement, even if the answer on the technical side is "not quite sure".

Occasionally a topic emerges which generates lots of info, on and off the forum, and perhaps a moderator's editorial intervention to draw together some key info and links to threads/news/drugs info would be helpful, like sometimes is done for blog postings, to highlight existing sources of knowledge/experience.  Introduction of Atripla may be a good example here.

- matt

Now playing: my cat's weedy miaow!
"The object is to be a well patient, not a good patient"

 


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