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Author Topic: So frustrated on new meds. Fatigue and Pain  (Read 1605 times)

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Offline lincoln6echo

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So frustrated on new meds. Fatigue and Pain
« on: May 26, 2013, 03:08:56 AM »
I was infected last June, diagnosed in Aug. Started ARV's in Oct.
I was on a trial until two months ago when I switched to Truvada and Miraviroc.
Last month my VL was 178, CD4 almost 800.

Since then, I've been experiencing fatigue like never before and things that should normally heal quicker are taking a long time. I flossed my teeth after forgetting for about a month. I've done that in the past and my gums ache for a day or two but then it's gone. This time, it was two weeks and it was very sore.

I go to the chiropractor every now and then and normally the readjustment provides instant relief.  This time, my joints ache like never before and I've had to return a number of times, along with getting massage therapy.  I work out a lot so I expect to have muscle fatigue and pain associated with that, but this is all very different.

I've also developed haemorrhoids which have been extremely painful. I've been on a prescription cream for a couple of weeks but it doesn't seem to be getting any better. My diet is not the cause as I eat all the right stuff and I use metamucil daily.

I'm very frustrated, in pain and always tired.  I don't know what to do.

I'm seeing my doc on thursday to get my latest labs and to discuss all this but at this point i'm about to pack it in with Truvada and Miroviroc. 

I don't know if they are the source of pain but i'm thinking definitely the fatigue.

Has anyone else experienced this type of thing on these meds?
Any advice, comments, insight would be appreciated.

lincoln.


Offline lincoln6echo

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  • Posts: 109
Re: So frustrated on new meds. Fatigue and Pain
« Reply #1 on: May 26, 2013, 05:18:07 AM »
the other thing I forgot to mention is I'm having night sweats too since I began these meds.

Offline mecch

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  • red pill? or blue pill?
Re: So frustrated on new meds. Fatigue and Pain
« Reply #2 on: May 26, 2013, 07:29:25 AM »
I'm sorry you are experiencing all these woes.  List them concisely on a piece of paper and make sure your doctor sees it. I hope you can get some answers.

Just wondering how your first months on the first combo were? Better? Do you know what drugs you were on?

As for the gums, excuse my lecture, but stop "forgetting" to floss for a month.  That's just asking for trouble. 

Also, why do you need metamucil if your diet is good?  Are you normally constipated?  Truly high fiber foods should keep things moving along. 

Why not lighten up the workout routine until you get your system reequilibrated? It sounds like you are adding insult to injury, by trying to maintain the business as usual routine, but things have gone awry.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline lincoln6echo

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Re: So frustrated on new meds. Fatigue and Pain
« Reply #3 on: May 26, 2013, 12:48:29 PM »
Thx, I will write them down and show him.

My first meds were great, aside from some GI issues.  I was on Kivexa and a GSK trial drug.  I had to come off the trial because I was not UD by week 24.  It's just how the study worked. My VL started off over 9 mil.

Yes, you are right, I need to floss more often, it's just curious that it took so long to calm down, that's never happened before.

I take metamucil because of the GI issues I was having.

Offline weasel

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Re: So frustrated on new meds. Fatigue and Pain
« Reply #4 on: May 26, 2013, 03:40:21 PM »

   Hi  Lincoln ,
                      Hope you are having a good day .

     I will have to ask ?    What is it that really hurts ?   I had HIV for 18 years
  before starting MEDS and   9 years down the road I do have  pain .
   I rarely am affected by fatigue .  Once in a while when I really over do it ,
But other wise I feel good .

   The teeth issue is a something not to play with !  I have lost half my teeth
  From HIV   !   I am about to loose another front tooth !   I take  good care of
 my mouth ?  It is what it is !  HIV affects people differently .

   Only being POZ such a short time , Maybe you need to adjust your activities ?

                                           Just my thoughts ,
                                                                        Weasel 

     
" Live and let Live "

Offline eric48

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Re: So frustrated on new meds. Fatigue and Pain
« Reply #5 on: May 26, 2013, 04:50:35 PM »
fatigue headackes, etc... are quite expected at meds initiation

at least you do not have any very adverse reaction, which is good

Hang on

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 2 months

Offline idee

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  • Posts: 260
  • Hi...
Re: So frustrated on new meds. Fatigue and Pain
« Reply #6 on: May 26, 2013, 05:03:01 PM »
I am on truvada, lexiva, and norvir. They work just fine for me. But I do experience light headedness when getting up or bending over. Not all the time, just at certain times. Like I was light headed one day for about half an hour two weeks ago.
I also take abilify so it could also be that. I just get through it by relaxing when it happens and taking a nap. When I am at school I just take a moment to breath and stand still for a couple seconds.
 

Offline lincoln6echo

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  • Posts: 109
Re: So frustrated on new meds. Fatigue and Pain
« Reply #7 on: May 26, 2013, 05:10:32 PM »
Thanks for reading and responding to my post you guys..i'm feeling quite discouraged and I appreciate the support.

what hurts...

the teeth thing - I actually have very good oral hygiene although from a flossing perspective I am falling short.  I brush with sonicare twice a day and don't really ever forget to brush my teeth.  The flossing thing is intermittent however and I am trying to change that.   In the past when I let it go like I recently did, it would hurt for a couple days then dissipate.  But this time, the pain lingered at the same intensity for about two weeks. that's never happened before. 

hemorrhoids - gross to talk about I know but just another example of something that's new since getting HIV.  I've had a flare up and it has persisted for about 3 weeks. it's very painful when I go to the bathroom and at other times. 

joint / muscle pain - I work out 3 - 5 days a week and I know what soreness of that sort feels like.  I started getting back into shape while I was on the other meds and it was working out ok.  I recently pulled something in my deltoid and since then it's just progressed to upper back pain that won't go away. I've seen the chiropractor and massage therapist (which i've been doing for about 8 years) and i'm not really getting any relief.

night sweats - not pain obviously, but something new on the new meds.

extreme fatigue - i was already working out long before starting the new meds but now it feels like i've taken a sleeping pill after i've taken it. I've tried taking them at night but then it hits me between 11-2pm and when I take it in the morning, by 5 or 6, i'm just done and I really have to push myself.

i'm 38 and I do expect to have some joint pain etc due to aging, but there is just a marked difference since getting HIV and starting these new meds.

I dunno...

 

Offline buginme2

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Re: So frustrated on new meds. Fatigue and Pain
« Reply #8 on: May 26, 2013, 05:24:23 PM »
Hi. I may have a slightly different view on this than some but My suggestion is dont start to assume the fatigue is due to your meds straight away.  It may be, but there is a laundry list of causes related to HIV that can cause fatigue that should be ruled out first.

#1 tell your doctor.  If your regular lab tests are fine ask for both a testosterone test and thyroid function test.  Both are relatively common to be off in HIV infected people and both cause fatigue.  There are some other medical conditions which should also be ruled out but start there because they are common.

#2 The hemmoroids should be checked and you should also have an anal pap and HRA at least once per year to rule out HPV/anal dysplasia as this is also very common in HIV positive men and women.

#3 floss more

:)

Remember hiv is a long road that sometimes throws a curve at you.  In the end you will be fine.  I hope you discover the source of your fatigue.

Offline lincoln6echo

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Re: So frustrated on new meds. Fatigue and Pain
« Reply #9 on: May 26, 2013, 05:33:55 PM »
Thank you bug

Offline mecch

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  • red pill? or blue pill?
Re: So frustrated on new meds. Fatigue and Pain
« Reply #10 on: May 26, 2013, 06:31:03 PM »
ABout the mouth stuff.  Why not go see a dentist.  Maybe that sonic thing isn't right for you.  On the one hand, if its really a good cleaner, I don't understand what you are doing when you finally floss. So, maybe you're flossing too violently? 

On the other hand, I hope not, but you might have some sort of gum disease - you might need a descaling of your roots, and then some antibiotics to get it all healthy again. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline lincoln6echo

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  • Posts: 109
Re: So frustrated on new meds. Fatigue and Pain
« Reply #11 on: May 26, 2013, 07:23:02 PM »
yah I have a cleaning coming up within the month. I'll inquire.

The thing is, I'm not doing anything different than before.
I've been using a sonicare for about 5 years and it's been great.

I didn't floss any differently than I did before.

I hope it's not gum disease. I don't see signs of it..but we'll see.


Offline NY2011

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  • Posts: 141
Re: So frustrated on new meds. Fatigue and Pain
« Reply #12 on: May 31, 2013, 12:02:33 AM »
Lincoln, are you taking any vitamins?
Consider increasing calcium, vitamin D and Stress B Complex. And, turmeric capsules to reduce possible swelling.

I'm a big believer that you know your own body, and if you're noticing something off, you shouldn't ignore it. 

You may want to consider using Listerine twice a day. I feel that it helps contribute to good oral health. 

For your hemorrhoids, you may want to consider applying a maximum strength vitamin E oil to your butt. The medicine may be causing you to go to the bathroom more often (the fiber supplement certainly could do it), and at the same time, drying out your skin ( and your butt hole) which can in turn be irritated more easily.  Without getting gross, I find that vitamin E helps it heal quickly.

Night sweats: a concern, but coud it be a climate control issue? I'm on Truvada and Sustiva and in the middle of the night, my body temperature spikes.  I feel myself heating up. I suspect that it's a reaction to the meds, but I've been adjusting for it with stronger A/C. Anyone else experience this on Atripla?

Finally, if you're not working out properly with regards to form, I'm inclined to believe that you will feel it more as a 38 y/o than when you were younger.   Hopefully your chiropractor is icing you for 10-15 mins after treatment.   You should be icing every day after the gym.

« Last Edit: May 31, 2013, 12:06:27 AM by NY2011 »
10/26/2011 - SEROCONVERSION (hi fever+rash)
10/31/2011 - CD4= 154  VL>500,000 
10/31/2011 - started on Truvada+Prezista+Norvir
12/14/2011 - CD4= 750 VL=6412 (45%)
01/27/2012 - switched to Atripla
04/23/2012 - CD4=1,221 VL= 140  (47%)
06/22/2012 - CD4=1,224 VL= ud    (49%)
12/18/2012 - CD4=1,031 VL= ud    (51%)
09/16/2013 - CD4=1,151 VL= ud   ( 49%)
03/26/2014 - CD4=1,050 VL= ud

Offline lincoln6echo

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  • Posts: 109
Re: So frustrated on new meds. Fatigue and Pain
« Reply #13 on: June 07, 2013, 04:56:08 PM »
Hey NY2011, thanks for your suggestions.

Yep, I take a multivitamin, coq10, fish oil.

My mouth issues have resolved and the after seeing the dentist I don't have any periodontal issues, gum disease etc. 

She said that due to stress I was likely grinding my teeth more than normal during sleep?  That' must have been a pretty intense bump and grind cuz I've never had that kind of tooth pain before..but so be it.  I have a night guard now and it seems to be helping.


For now most things have cleared up aside from the pesky fatigue.


I just got my new meds and I'm on Kivexa and Raltegravir as of two days ago..so we'll see how that goes.
 

Offline NY2011

  • Member
  • Posts: 141
Re: So frustrated on new meds. Fatigue and Pain
« Reply #14 on: June 11, 2013, 08:12:56 PM »
Good to hear. I'm a grinder too at night, so I just ordered a night guard.  I hear it sux to sleep with it in your mouth the first few nights.  My dentist told me to take a shot before bed, haha.
10/26/2011 - SEROCONVERSION (hi fever+rash)
10/31/2011 - CD4= 154  VL>500,000 
10/31/2011 - started on Truvada+Prezista+Norvir
12/14/2011 - CD4= 750 VL=6412 (45%)
01/27/2012 - switched to Atripla
04/23/2012 - CD4=1,221 VL= 140  (47%)
06/22/2012 - CD4=1,224 VL= ud    (49%)
12/18/2012 - CD4=1,031 VL= ud    (51%)
09/16/2013 - CD4=1,151 VL= ud   ( 49%)
03/26/2014 - CD4=1,050 VL= ud

 


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