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Author Topic: Going to the Doc today maybe starting treatment soon!  (Read 3012 times)

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Offline makesmewonder

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Going to the Doc today maybe starting treatment soon!
« on: September 16, 2008, 04:41:44 AM »
 :-\

Hi everyone!
I am really scared! my doc told me the last time i went there ( 3 months ago) that i might need to start taking the medication soon, by the end of september! and i am really scared of the side effects!
Just 3 weeks ago i started having panic attacks, i dont know mayble i am overreacting or something but i am really really really stressed about it, i cant sleep anymore!
The side effects are my mainly concern! i dont wanna have all those sympthoms that everybody describe and i am really scared!
So tonite i will see the doc and see what he says!
Ahhhhhhhhhhhhhh
very stressed right now!
Well i just wanted to share and see if someone went through the same here!
Thanks
T

Offline Finnboy

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #1 on: September 16, 2008, 04:58:52 AM »
The fear you describe is only natural; but try to keep it in check with the knowledge that starting your first combo is only very rarely anywhere nearly as bad as most of us imagine it to be.

Whilst it is all very well to prepare yourself for what could happen, try to focus on what is likely to happen. What is likely to happen is that life will go on and that the side-effects will be relatively easy to manage. If they aren't easy to manage, then there are people to help you and other meds that you are likely to get on better with.

Offline newt

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #2 on: September 16, 2008, 05:05:35 AM »
Yes this is THE big worry, but you may be surprised, true, some people have horrid side effects but mostly these days they's mild and manageable, and if your first combo is too nasty, you can change it.

Consider: treatment v HIV. The side effects of HIV are, erm, quite bad.

Consider also treatment will hammer your virus, let your immune system grow in strength and  then you can get on and do the things you want to do with your life. :)

It is important to discuss possible side effects with your doc and ask (1) how many get which side effects (2) how many people have to change a drug because of side effects (3) how long short term side effects might last (4) what your options are if you don't fancy a drug with a particular side effect.

If you don't like a particular drug's potential side effect just say no to it (but not to all treatment eh?).

I was disappointed by my side effects, very mild they were...shame I thought as I wanted leverage over my just ex number 1 man who'd waltzed off into the sunset (okay, Camden) but, ha! didn't work that plan.

I did feel miles better in a very short time though.

Good luck

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

Offline Finnboy

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #3 on: September 16, 2008, 05:15:44 AM »
Also, since I see that you are in the UK, if your clinic hasn't already given them to you, I would urge you to download, or send off for: Introduction to combination therapy and Avoiding & managing side effects from http://i-base.info/guides/index.html

They are, in my opinion, the two outstanding resources available to anyone about to start treatment.



« Last Edit: September 16, 2008, 05:45:43 AM by Finnboy »

Offline makesmewonder

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #4 on: September 16, 2008, 05:43:44 AM »
Hi Matt and Finnboy!
Thank you very much for your responses! i am really worried about starting the treatment but if i have to i will do!
matt, its nice you are in Camdem! i am in Central London!
We are close!
Hehehe
Did u start taking the meds?
XX
T

Offline Sydney

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #5 on: September 16, 2008, 06:15:55 AM »
Hi T.
You're in lots of company with your fears!!  The others have given very good advice - and thanks, guys, it's reassurance I need too. 

Another thought: T, you seem to be worried about "side-effects" in general. It's easier to deal with fears that have a definite face, and hard to deal with ghosts.  Could I suggest that you find out what specific combination your doctor is recommending - and look at the possible side-effects of that combination.  Then look at available alternatives and their possible side-effects.  Read, discuss, and don't feel pressured; give yourself time to make the final decision your own, rather than one you're lumped with.

For example, my doctor starting prescribing Truvada (tenofovir+emtricitabine) + Stocrin (efavirenz).  He was making the decision and started writing the scripts, which left me feeling out of control and really anxious. So I said "Whoa - I want a say in this!".  Then, after finding out what the options were, I went away and did my homework. And I also made up my mind I wasn't going to be pressurised. I consulted an Aids Council treatments officer, who was incredibly helpful; and I went to another specialist to get a second opinion.
* For reasons I won't go into, I figured I was less at risk for the side-effects of Viramune (nevirapine) than for the side-effects of Kivexa (abacavir/lamivudine).  I discussed this with the doctor and made the decision that I'd rather go with Kivexa than Truvada.  He accepted my reasons as valid.
* Given my tendency to anxiety and depression, I was also very anxious about handling the possible side-effects of efavirenz, and more confident about handling the possible side-effects of nevirapine.  So after reading and discussing, I decided to go with nevirapine.  Again, the doctor would have preferred efavirenz - but he wasn't able to give me knock-down reasons against nevirapine.

The upshot was that after taking the time I needed to inform myself, I felt more in control, less anxious, and able to focus on specific side-effects rather than "side-effects-in-general".  So yes, I'm still scared - but now I know what I'm scared of, and that helps.



Offline makesmewonder

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #6 on: September 16, 2008, 06:41:56 AM »
Hi there Sydney!
I know which combination the doc wants, Sustiva+Truvada!
I am really scared about the side effects because i have a tendency as well of having panic attacks, i had them before and i tend to panic a lot!
So i hope i will manage it, because i had to take some antidepressants before and in the beggining as pretty tough but i did it! so i hope i will do this time as well!
Thank you for your thoughts!
Very helpful!
Cheers
T

Offline Finnboy

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #7 on: September 16, 2008, 06:50:50 AM »
makesmewonder,

Be sure to speak to your doctor about those specific fears then. If s/he doesn't reassure you, then ask about the alternatives and ask for time to make your decision.

HIV consultants generally respond well to you taking an interest and getting involved in the decisions that affect you. You are going to a reputable, popular and very experienced clinic; so I have no reason to think that your consultant will be any different.

HUGS

Finn

Offline Sydney

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #8 on: September 16, 2008, 07:37:07 AM »
Yo T!

Sustiva/Stocrin (efavirenz) + Truvada is the "preferred option" for the doctors - for technical reasons and because they come in one pill per day.  I presume it's the side-effects of efavirenz that you're worried about?  Me too, and for the same reasons as you.  That's why I looked at the "alternative" option of Viramune instead of Sustiva/Stocrin. I came to the conclusion that Viramune is clearly a good option, so I made a firm decision that I didn't want to risk the side-effects of Sustiva (efavirenz).

You might find it worthwhile to look at Peter Staley's response to my question about Viramune cf Sustiva/Stocrin (posted August 31).  If you go through the posts, you'll find that a number of people had no major problems with Atripla (which is your combination in one pill).  But a fair few others did have bad experiences with the efavirenz in Atripla and switched to Truvada+Viramune (nevirapine).  If you do a search of "Atripla" or "efavirenz" in the forum you'll get the general drift of people's experiences.

Why don't you put your fears to your doctor (they're quite reasonable fears), and ask if there are any good reasons to avoid Viramune.  My guess is that it'll be a matter of convenience - viz, Sustiva+Truvada come in one pill (Atripla), whereas Truvada + Viramune would involve three pills a day with more risk of missing doses.  Maybe at your age that's an important consideration - but you have to weigh up the risks of missing doses against the possible side-effects of efavirenz. Whatever the doctor's answer is, you can always float it in this forum to get ideas.

For a quick comparison of the pros and cons of efavirenz and nevirapine, check out  http://forums.poz.com/index.php?action=dlattach;topic=20779.0:attach=17351
If that doesn't work, go to "Treatment Naive and Viramune" post by Darwin on May 09, 2008, and click on the link that Peter Staley gives there.

Good luck.

Offline newt

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #9 on: September 16, 2008, 12:43:29 PM »
What Finnboy said

The i-Base page on efavirenz (Sustiva) side effects is here:
http://www.i-base.info/guides/side/efavirenz.html

it is important you discuss your pre-exisiting anxiety with your doc, and decide if you want to go with his/her suggestion of efavirenz or use an alternative, probably nevirapine (Viramune) or a boosted PI like Kaletra or atazanavir + ritonavir. All these work more or less as well.

1st time combo is your best shot, and getting it right is worth a little time.

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

Offline Nashvegas

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #10 on: September 16, 2008, 04:46:34 PM »
I'd strongly suggest going with Viramune.  It's been side-effect-free for me, and I was very nervous about the side effects of Sustiva/Stocrin myself. 
8/12/06 - sero-conversion
9/14/06 -- Positive Test results confirmed
9/21/06 -- CD4 - 586; viral load 8,000; 29%
12/25/06 -- CD4 - 373; VL 2,800; 23%
2/10/07 - CD4 - 228; VL 865; 25%
3/15/07 -  CD4 - 365 (no viral load test)
5/1/07 = CD4 - 341; VL 4,358; 27%
8/1/07 - CD4 - 315; VL - 2,300; 25%
9/20/07 - CD4 - 378
11/22/07 - CD4 - 257; VL 7,300;
2/27/08 - CD4 231 (16.5 %), VL 5,960
5/20/08 - CD4 229 (18.3%), VL 11,100
6/17/08 - CD4 166 (14.5%), VL 9,030
6/17/08 - STARTED VIRAMUNE + TRUVADA
7/2/08 - CD4 272 (20%), VL 113  :-)
7/16/08 - CD4 -217 (21.1 %), VL - Undetectable
7/30/08 - CD4 - 220 (20.4%). VL - 92
8/14/08 - CD4 - 280 (22%) VL-undetectable
1/04/09 - CD4 - 250 (28%) VL-UD
5/15/09 - CD4 -393 (28%) VL-UD
8/15/09 - CD4-346, (26%) VL-UD
11/15/09 - CD4-373 (28%)

Offline Imnew2this

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #11 on: September 16, 2008, 06:05:25 PM »
Just thought I'd let you know I've been on Atripla now for 3 weeks without any major side effects at all.  The first night was a tad rough, but other than that, its been great.  I'm already feeling more energetic and happy.  I've had a few dreams, none bad.  In fact, I wake up now disappointed that I didn't dream because I enjoyed them so much! 

Good luck to you and remember, EVERYONE responds differently to meds.  There are choices out there, you just have to find the right one FOR YOU.

Offline jabez

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #12 on: September 16, 2008, 06:55:25 PM »
I agree with those who suggested that you spend some time studying about Sustiva/Efavirenz, and the possible side effects that may accompany it.   Some people get dizzy and spaced-out by it; others don't.  Some people have crazy dreams because of it; others don't.   It effects all of us differently.   If the possible central nervous system side effects make you anxious and uneasy, then skip the Sustiva and opt for one of the other alternatives.   When I was starting meds last year, I gave a great deal of thought to the "Sustiva Challenge", and ultimately decided that I was willing to try it.  I've never regretted it.   It's been a great drug choice for me.   It hasn't been a good choice for a lot of other posters here.   Just get familiar it, so that you can make an informed decision.  And good luck!   
Sept 2007 -- CD4 = 68; VL = 469,000
Started Atripla Sept 21, 2007
Nov 2007-CD4=217;VL=332
Feb 2008-CD4=237;VL=<50
Apr 2008-CD4=271;VL=66
Aug 2008-CD4=440;VL=52
Jan 2009-CD4=403;VL=61
May 2009-CD4=480;VL=129
Sep 2009-CD4=376;VL<40
Jan 2010-CD4=476;VL<40
Jul 2010-CD4=539;VL<40
Jan 2011-CD4=461;VL=53
Jul 2011-CD4=515;VL<20
Jan 2012-CD4=506;VL=54
Aug 2012-CD4=440;VL=21
Jan 2013-CD4=447;VL=<20
Jul 2013-CD4=406; VL=<20

Offline makesmewonder

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #13 on: September 17, 2008, 03:54:46 AM »
Hi everybody!
So i went to the doc! And i told him about the Viramune, he said it is fine if i want but he does not recomend it, as they are three pills and i might miss one and then the thing get complicated!
So we will stick with the Truvada+Sustiva! i will give it a go with the Sustiva, my doc booked me to see an Psycologist and the medication advisor for next week, and i will start having the medication Oct 16th! So i went home and panicked a lilttle bit! i did not sleep a wink, well only 2  hours, was tossing and turning just thinking a lot of bull****!   I think i will never sleep again!
I told the doc about my anxiety attacks and he said that probably is because im thinking too much about the medication and all! so i dont know! all i know is that i am not sleeping anymore!
ahhhhhhhhhhhhh
thats is it!
Cheers
T

Offline newt

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #14 on: September 17, 2008, 04:19:53 AM »
Why not wait a bit? If the idea of meds is freaking you out so much at the mo. A few weeks or months won't make a difference.

Perhaps talk to the meds adviser, and maybe some people who have done meds. Most big UK clinics have patient forums/groups and i am sure they would be happy to field someone.

Setting yourself up some support before you start may help eh? Like, is logging on here good enough? Do you want someone on the end of a telephone? Can you enlist a friend? Can you stay over with someone for the first few days (or sommat like)?

And having a Plan B now is reassuring in case the first combo don't suit.

The doc may say the 16th, but I say you decide when you are ready. better to be ready.

You are entitled to a 2nd opinion if you wish.

UK guidelines say treat when CD4 count is confirmed at 350 of below if the patient is ready. This last bit is important.

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

Offline Finnboy

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #15 on: September 17, 2008, 04:36:46 AM »
I know it is hard to imagine right now; but the morning after you take that first set of meds, you'll probably be posting in here telling us what a breeze it was and wondering what all the fuss was about  ;)

If you are still going with the Sustiva & Truvada option come 16th October, I am more than happy to take you step-by-step through exactly how that first pill is likely to make you feel, so that you know in advance what is 'normal' and what not to worry about. Same with strategies for minimising and managing any side-effects. You know how to get hold of me if you need to talk one-on-one and you are after all near enough a neighbour, so I do have the (somewhat debauched) reputation of the neighbourhood to think about  ;)

Seriously though, as Newt says, time lines and drug choices aren't set in stone. Take this one step at a time at your own pace and start when you feel that you have everything lined up and are as prepared as you can be (and remember that less than a year ago, the guidelines for starting treatment were at a much lower CD4 count than they are now, so you really aren't needing to rush this).
« Last Edit: September 17, 2008, 02:22:14 PM by Finnboy »

Offline makesmewonder

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #16 on: September 17, 2008, 05:21:44 AM »
Hi Matt and Finnboy!

Than you very much for your responses!
Finnboy, I really would like to you guide me through the first day and all that, cause I donít know what to expect ( I know that this may vary from each person) but its always good to know that someone out there has been to the same path I will have to go through)
I am concerned because my cd4 is 250! Is a little bit low! But I donít have any sympthoms! Also I have been coughing and the doc gave me some antibiotics only for 3 days! But he said I should not worry about anything!
So I am taking it easy! Well trying to, last night only had 2 hours of sleep!! Could  not stop thinking about it!
Cheers
T
 ???

Offline Finnboy

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #17 on: September 17, 2008, 05:43:02 AM »
Then listen to your doctor, because 250 certainly doesn't constitute an emergency and is still a higher CD4 count than most of my HIV+ friends started at.

HUGS

Offline makesmewonder

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #18 on: September 17, 2008, 05:57:51 AM »
Finnboy!!

Thank you very much Darling! you are a star!

Offline sharkdiver

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #19 on: September 17, 2008, 10:33:28 AM »
Starting meds is a huge emotional event in having to live with this disease. It would probably be a good idea to start thinking about this as your attempt to take better control of your health. There are no guarantees that the side effects will or will not affect your daily living. It would probably be a good idea to talk to a professional (such as a counselor ) to help you get a handle on dealing with the worries and fears that you are having.

Taking meds is a commitment. A big commitment. You are very fortunate to be living in a time when there are options for treatment. I don't want to downplay your concerns because they are real, they are valid, they are normal. But I think you would rather experience a few side effects from meds than having a nasty OI  that will rot your body away. I've been on that path because there was nothing available at the time I was infected. I don't wish that on anyone.

Good luck

Offline makesmewonder

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #20 on: September 17, 2008, 11:18:41 AM »
hey Sharkdiver!
Thank you very much for your thoughts! It really opened my eyes and encouraged me to take responsability for my health! its better tp havve some side effects than to have an OI! you are correct!
Come what may! lol

thank you!

XX
T

Offline Peter Staley

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Re: Going to the Doc today maybe starting treatment soon!
« Reply #21 on: September 17, 2008, 12:04:45 PM »
Hi everybody!
So i went to the doc! And i told him about the Viramune, he said it is fine if i want but he does not recomend it, as they are three pills and i might miss one and then the thing get complicated!
So we will stick with the Truvada+Sustiva! i will give it a go with the Sustiva, my doc booked me to see an Psycologist and the medication advisor for next week, and i will start having the medication Oct 16th! So i went home and panicked a lilttle bit! i did not sleep a wink, well only 2  hours, was tossing and turning just thinking a lot of bull****!   I think i will never sleep again!
I told the doc about my anxiety attacks and he said that probably is because im thinking too much about the medication and all! so i dont know! all i know is that i am not sleeping anymore!
ahhhhhhhhhhhhh
thats is it!
Cheers
T

I had what felt like anxiety during my first 10 days on Sustiva, but fortunately, by doc had also prescribed lorazepam, which worked wonders.  Why don't you ask your medication advisor about that as well?

Generally, you only need to get through about 10 days of short-term wackiness with Sustiva, then everything settles down for most folks.  And if it doesn't, you can switch therapies then -- no biggie.

Keep us updated, okay?

 


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