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Author Topic: I feel worse now that I'm getting treatment!  (Read 3577 times)

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Offline Pippet

  • Member
  • Posts: 135
  • Life is drawing without an eraser.
I feel worse now that I'm getting treatment!
« on: November 29, 2006, 03:06:57 PM »
   I started treatment 1 week ago.  Truvada and Viramune. My T-cells were around 200 and Viral load >200,000.  (I think). 
   My problem is that I have a hard time functioning.  I am disoriented and very sick feeling all of the time.  I feel like I'm just going to pass out at times.  I can't seem to shake it and it is depressing the sh*t out of me.  Also I have no appetite and I'm loosing weight.  Are these side effects of the drugs? Will they ever subside?
    My ID doesn't seem concerned by these side effects and basically told me to suck it up, it's all part of the disease.
    Any thoughts or words of encoragement?

signed,
Newby with no support
Diagnosed Aug. 2006
CD4 246, VL 202,000
Started Truvada/ Viramune 11-23-06
Taken off meds 12-06-06 (Bad Rash)
Started Truvada/ Reyataz, Norvir 1-18-07
Taken off Norvir 3-1-07 (Jaundice)
New doc 3-22-07
CD4 229  VL 1031
My latest cocktail...  Truvada and Kaletra (4-6-07)
CD4 289 VL 350 (5-15-07)
CD4 308 VL 115 (8-06-07)
CD4 349 VL 511 (11-5-07)
CD4 489 VL 383 (2-4-08)
CD4 483 VL <50 (5-6-08) YEAH
CD4 545 VL 108 (9-12-08)
CD4 409 VL <48 (1-27-09) YEAH
CD4 505 VL <48 (5-20-09)
CD4 385 VL <48 (9-15-09)
CD4 609 VL  159 (2-28-10)

Offline thunter34

  • Member
  • Posts: 7,324
  • His name is Carl.
Re: I feel worse now that I'm getting treatment!
« Reply #1 on: November 29, 2006, 03:24:55 PM »
I have thoughts and words of encouragement, so listen up!  Yes, the meds sucketh big time for most.  Although I started out on the meds with fewer than 89 t-cells, I never had any major health complaints from AIDS to speak of.  I was very lucky in that regard.  That said, my experience was that the meds made me feel worse than AIDS ever did.  Again...that is said by someone who had not experienced one of the more serious opportunistic infections.

Put simply, the meds bitch-slapped me, punched me in the gut then told me they loved me...by dropping my viral load and hoisting my t-cells back up to the 300 range.  Tough love, eh?

It took me a few months to actually get back to any type of 'normal' feeling.  The worst was the first 2-3 weeks, though.  The worst kicked in mid-way through the first week and hung around til about the beginning/middle of week 3.  The nausea & stuff were still formidable, but I could feel myself climbing upward after that low point.

Hang in there!  Both the virus and the meds are asking a lot of your body.  Good luck!

~+
AIDS isn't for sissies.

Offline randym431

  • Member
  • Posts: 1,125
Re: I feel worse now that I'm getting treatment!
« Reply #2 on: November 30, 2006, 03:34:12 AM »
Just my 2 cents...
If you just started a week ago, don’t get too upset yet. It takes a few weeks but the sides should lessen greatly after that. Your VL is still up there, and that can make you feel like crap too, I know.

I also have a theory. When you start meds, with a high VL, the meds have a lot of work to do. It like an army introduced to close down the VL progress. So there is like a war going on inside you right now, and the meds WILL win out and knock the VL down to undetectable in weeks, or a couple months. I'd guess at your next lab, your VL is under 1500. A huge drop. And after that, <50.

But its the initial med vs VL war that I think is making you feel like crap. Once the Vl is reduced, the med army has no enemy to confront and the war tapers off. Your VL is knocked down, your body can now start to recover, and you realize you begin feeling a lot better. This takes a few weeks, maybe a couple months. So hang in there and don’t expect too much after just the first week.

The first thing you may notice after another week passes is the sides hit you less and you feel more inner strength coming back.
At least thats how it went for me, but the first two weeks was not fun. But then one day I realized I felt a lot better and the sides were not hitting me much any longer.
Sure, there will be days and weeks down the road you have or feel set backs, and just crappy for a few days, but as long as that VL goes and remains undetectable, you can and will see good results in your future labs.

Also, those "bad" days down the road will also depend on how you take care of yourself. Eat as healthy as you can, lots of water too, and I found exercise (even just walking around the block a few times) can do wonders to repairing your body and strangely reducing all the side effects. Its when I'm a couch potato and get lazy that I feel worse. I blame it on the meds, but after I got some exercise in, it knocks that icky feeling out of me. So taking care of yourself has a lot to do with it.

Sleep, healthy eating and exercise. Exercise can be a dirty word and you might think the jym or hard core exercising. Nope... Just a good long walk two or three times a week does wonders. Too bad its getting Winter around my corner of the world and its hard to get out. So I found I can walk in the sky walks a few times a week until the weather gets warmer. Or walking in the mall with the old folks.
Take care, and (as they say) it does get better. A week into meds is just the beginning, so don’t judge from that.

PS. I just noticed you're on Truvada and Viramune. Thats suppose to be a very tollerable combo. I am on sustiva myself. Now THATS a fun drug...    :o
« Last Edit: November 30, 2006, 03:44:50 AM by randym431 »

Offline Atripla_User

  • Member
  • Posts: 61
Re: I feel worse now that I'm getting treatment!
« Reply #3 on: November 30, 2006, 10:47:03 AM »
i feel the same way, i only started a week ago and feel yuckky since starting. i felt fine w/o meds, but know if i kept waiting i'd be sorry later. i guess i will just have to be patient and pray it gets better, i feel like such a drunk/druggie. i never even like to take tylonol in the past, so now this is all really pissing me off that i have to take this medicine or risk dying from illness. ahhhhhhh :'(

Offline Pippet

  • Member
  • Posts: 135
  • Life is drawing without an eraser.
Re: I feel worse now that I'm getting treatment!
« Reply #4 on: November 30, 2006, 11:01:05 AM »
Thanks for the reassuring words.  I guess I'll just have to ride out the storm.
I'm glad I found this web-site, it's nice to know there's a place to turn for support.
Diagnosed Aug. 2006
CD4 246, VL 202,000
Started Truvada/ Viramune 11-23-06
Taken off meds 12-06-06 (Bad Rash)
Started Truvada/ Reyataz, Norvir 1-18-07
Taken off Norvir 3-1-07 (Jaundice)
New doc 3-22-07
CD4 229  VL 1031
My latest cocktail...  Truvada and Kaletra (4-6-07)
CD4 289 VL 350 (5-15-07)
CD4 308 VL 115 (8-06-07)
CD4 349 VL 511 (11-5-07)
CD4 489 VL 383 (2-4-08)
CD4 483 VL <50 (5-6-08) YEAH
CD4 545 VL 108 (9-12-08)
CD4 409 VL <48 (1-27-09) YEAH
CD4 505 VL <48 (5-20-09)
CD4 385 VL <48 (9-15-09)
CD4 609 VL  159 (2-28-10)

Offline budndallastx

  • Member
  • Posts: 463
Re: I feel worse now that I'm getting treatment!
« Reply #5 on: December 07, 2006, 07:01:36 AM »
Today is the start of week three for me on meds.  The first week was the worst than ever having the flu.  The nausea, the dizziness, and the lack of energy were just overwhelming.  Some wise sage on here said that I've hit rock bottom and the only way is up.  Amazingly enough, the side effects are less and less and I am functioning again. 

Good eating and sleeping habits seems to be working for me.  I now do 8 hours of sleep instead of my usual 5.5 hours.  I am refreshed and and building up my energy reserves.  Haven't started the exercise program yet but that is next on my list. 

For the nausea, a nurse suggested a Pepcid twice a day to help overcome that problem.  It is working for me so you might want to try that out.

Good luck on this and I bet by Christmas this is just a bad memory you'll be telling other newbies here on the forum.
Meds since: 11/20/2006
Sustiva / Truvada
12/08/2008 VL:<48 CD4 622 (38%)   
9/8/2008 VL:<48 CD4 573 (30%)
5/2008 VL:<48 CD4 464 (30%)
1/2008  VL: <50  CD4 425(28%)
9/2007   VL: <50  CD4 465 (27%)
6/2007   VL: <50   CD4 443 (26%)
3/2007  VL: <50   CD4 385 (25%)
12/2006 - VL: <50   CD4: 384 (25%)
11/2006 - VL:  22K  CD4: 208 (18%)

Offline RapidRod

  • Member
  • Posts: 15,288
Re: I feel worse now that I'm getting treatment!
« Reply #6 on: December 07, 2006, 03:39:30 PM »
I was on Sustiva and Truvada then they changed it to Atripla and now I'm on Kaletra and Truvada and the Kaletra is the worse. I didn't have any trouble with Sustiva and Truvada or the Atripla, but when I went on Kaletra, I'm sick in the mornings and then I get sick again in the evenings. I hope the side effects are short lived.

Offline chadnla

  • Member
  • Posts: 84
  • Relaxed in SoCal
Re: I feel worse now that I'm getting treatment!
« Reply #7 on: December 08, 2006, 11:53:11 AM »
when i started on kaletra and combivir it knocked me out for 2 days. felt like a really bad flu. after that i was fine so it's just an adjustment period that your body is going through. you will likely see improvement in your numbers soon, which should lift your spirits.  the thing that got me was the fatigue.  i remember being bogged down by 1pm everyday and having to take a nap for an hour or two, even though i worked out in the morning. it was due to low testosterone, which HIV feeds on (or so my doctor told me).  but that subsided after taking some androgel for 2 months. now no problem.

try to eat even though you don't feel hungry. your body really needs the nutrition!!

good luck
"I do not believe in a fate that will fall on us no matter what we do. I do believe in a fate that will fall on us if we do nothing."

Offline Atripla_User

  • Member
  • Posts: 61
Re: I feel worse now that I'm getting treatment!
« Reply #8 on: December 08, 2006, 12:12:56 PM »
this rash all week is killing me, it itches so bad, my skin is crawling, bendril, calimine lotion hardly work, nor aveeno bath either,,,,,eeeeeeeeeeeeeehhhhhhhhh

Offline Atripla_User

  • Member
  • Posts: 61
Re: I feel worse now that I'm getting treatment!
« Reply #9 on: December 11, 2006, 02:20:27 PM »
skin is still crawling......a week already

Offline Rockit

  • Member
  • Posts: 71
  • i want it all - i will shine
Re: I feel worse now that I'm getting treatment!
« Reply #10 on: December 11, 2006, 03:02:44 PM »
yes sir, they r right. do wth the doc. says. and  u will survive. i too was puking everythig from meds. to gatorade and water. they offered me ice chips if i could handle them. gross. nausea the house!

but if u have faith- u will knw its part of wht ur destiny holds. u will make it . unless ur wanted in heaven. maybe its not ur time. so put up with it cuz someone cares.

i had one nurse stay in the room looking at me till i took my meds. she was tuff. but i appreceate that now.

luv from texas - javi
...after the storm, the calm......

Offline Christine

  • Member
  • Posts: 1,069
Re: I feel worse now that I'm getting treatment!
« Reply #11 on: December 11, 2006, 05:14:37 PM »
Hi Pippet,
Yes- the first few weeks can be very hard. The side-effects can be difficult to work through. Keeping in contact with your doctor is important. If the side effects worsen, call the Dr right away just to be sure the reaction is a side effect you can work through, or something that is more serious.

Take it easy on yourself during this period. Eating many small meals throughout the day helps. Drinking plenty of fluids, water, sport drinks, juices. Eat healthy, nutrient dense foods. Get plenty of sleep. Pretty much everything your Mom told you growing up applies.

Keeping a journal of how you feel each day, and any questions that you want to ask the doctor will help also at your next appointment.

Meditation or light yoga to help keep your spirits up, and your thinking within a positive frame of mind also helps.

Setting a timer or an alarm can help with compliance on the meds.

Be strong, and post here when things get rough.
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline libvet

  • Member
  • Posts: 327
Re: I feel worse now that I'm getting treatment!
« Reply #12 on: December 11, 2006, 09:22:22 PM »
I'd say stick it out for a couple of weeks and if there is no improvement, speak to your physician.

My first night on meds  (Sustiva and Combivir), I took my meds at night before bed.  I got up in the middle of the night to take a leak and was all groggy.  I heard a loud "THUMP!" and the next thing I knew my boyfriend was standing over me asking me if I was alright and I was laying on the bathroom floor.

It got better after that and after the first month, I hardly noticed any symptoms at all.

The meds are pretty harsh to adjust to, but don't give up too quickly because a lot of the time the first few weeks are the worst and then it gets much better.

Michael

Offline megasept

  • Member
  • Posts: 478
  • Steven here...
Treatment often feels like #%^$^!$@^!$@, that's for sure!
« Reply #13 on: December 21, 2006, 11:41:05 PM »
NEW-B: You've got lots of support right here. Loving, experienced people, with lots of information.

There is nothing too surprising in what you report. Still, it can't be much fun. Your numbers seem to indicate you do need treatment now. I have never taken your drugs, but many folks here know these drugs well. Assuming you felt fairly well most of the time before a week ago, then you will be able to compare pre-treatment with current treatement. If you were often ill or had a host of problems it might be hard to separate "the disease" from the treatment. You should cut yourself a lot of slack right now, Limit your obligations and physical activity until you start getting used to treatment. Realize the drugs will improve your health, and you will probably begin feeling better than pre-treatment some time in the next few months. That is something worth looking forward to.

In a couple of weeks you'd know better than anyone else what's the disease and what's the treatment. You will adjust. Every few days and certainly weeks, things should get easier. If you don't, your MD and you can switch your drugs. A number of drug combinations should have a powerful affect on your health. That's worth feeling under the weather for, at least to me. So those are my general thoughts and words of encoragement. I have been poz for 16 years, and my life is still very full. I have never "felt" better treated than untreated. The bottom line is I do what seems best for my health. I wish you steady improvement and many good years ahead.  ;) -megasept


Offline antibody

  • Member
  • Posts: 525
  • "every man thinks his burden is the heaviest"
Re: I feel worse now that I'm getting treatment!
« Reply #14 on: December 22, 2006, 01:53:49 PM »
yea i dunno i really can't say weather i feel better or worse since starting Atripla. it's i feel different. the things that bothered me before meds are subsiding of course and now have new aliments to bitch about. so sometimes i feel better and others i don't. some days are good and some days are bad. i always try to consider what other people are going through. it makes me stop and be grateful a second to see my strife may not be as bad as i get carried away with. every man thinks his burden is the heaviest but in fact when you look around it may not be.

happy holiday's to all!
love tim
Timbuk      <50/ 794  CD4 10/06 
                 <50/ 1096 CD4 3/07
                 <40/ 1854 CD4 4/09

Started Atripla  7/14/06
Switched to boosted Reyataz Truvada 3/28/07

*Ask me about Medical Marijuana and how it can help you!*

Offline Catman

  • Member
  • Posts: 419
  • Blessed with more than 9 lives! + since 1986
    • Who is the Catman?
Re: I feel worse now that I'm getting treatment!
« Reply #15 on: December 26, 2006, 05:56:57 PM »
Remember, there is a WAR going on inside your body. When I began with Fuzeon,Aptivus and Norvir the first 3-4 weeks were pure hell. I always felt a tingling sensation in my veins that bothered me. I though that aids was taking over me and that I was going to die. Even during my sleep I could feel something like ants crawling inside my veins. IT WAS the war between the meds and hiv. The meds have won so far, so hold your ground buddy and be tough because we have all gone through this. Keep a positive state of mind and always say to yourself;" I'm going to be fine, the meds are killing the virus and my health is getting better each moment!" Make a motto for yourself that can help you tolerate the situation and you will soon see that thing will get better. :)
Catman

Meow to the birds
Meow to the tree's
Meow to the end
of this dreadful disease...

Offline FiercenBed

  • Member
  • Posts: 183
Re: I feel worse now that I'm getting treatment!
« Reply #16 on: December 26, 2006, 06:17:50 PM »
jeeesh....when i look back @ starting the kaletra & truvada in july it seems like a decade ago. i would call the dr and say...."i am soooo sick"! u cant stand up, u cant sit down, u cant lie down, ya cant sleep. u cant eat. and time seemed to go soooo slow. i remember just standing in my living room staring @ the clock. people kept saying...itl get better...and i was like WHEN!? but it did. nota lota options.....gota do what ya gota do....hang w/ it!

Offline Rockit

  • Member
  • Posts: 71
  • i want it all - i will shine
Re: I feel worse now that I'm getting treatment!
« Reply #17 on: December 29, 2006, 03:26:11 PM »
JESUS luv US
...after the storm, the calm......

 


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