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cybersecretary
Newbie

Reged: 10/25/12
Posts: 21
Dr. will not change my meds. Help. I can't go on.
      #273239 - 08/01/13 07:55 AM

hi perhaps someone can help me. I have been wanting to change my meds for months and he refuses. I have excellent labs. "There is nothing wrong with you. No your HIV meds are not causing your symptoms" I suffer in pain. 2 years no answer to solve it. So i want to change my meds..to what ? i do not know .
Perhaps someone here knows..!

He is "the expert" . oxy dose got increased and making me insane. Literally.
I do not want to take oxy. I want to change my cocktail and see if that helps.

I am pretty sure i have IRIS. (previous doc took me off meds (Atripla made me crazy) and when i re started meds this pain syndrome began.. otherwise i was doing great. doc says no.

There are no other docs to go to. This doc is very experienced with hiv meds..
and until i find a new doc i just cant go on like this.

Currently on Isentris, Reyataz,Abacavir

we have butt heads because he thinks i have psych issues. My therapist told him i am "normal". and i just feel that if we try a new regime perhaps i will feel better. I only have have psych issues with him as he will not change my meds!

I am at the point that I want stop the taking meds all together. this is what happened with Atripla . It made me crazy and that doc would not switch me..

Now i have this pain thing and I can't get a change.
I am a woman, 50 hiv+ 20 years. UD for over 10 years (except when i was taken off meds for 3 months in 2011) CD4 800's

I felt better 10 years ago when i had a UDvl and 475cd4... go figure.


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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1738
Loc: Jersey Shore
Re: Dr. will not change my meds. Help. I can't go on. new
      #273246 - 08/01/13 07:38 PM

Have you tried cymbalta? What type of pain are your experiencing? YOur right that the oxy is NOT the answer. Again what type of pain are we talking about? You may of posted it else where but it would be easier if you could re-explain. I know how exhausting pain can be on the body . Send me a pm and see if we can come up with something.

--------------------
Look up to the Heavens for the answers to Lifes questions .

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cybersecretary
Newbie

Reged: 10/25/12
Posts: 21
Re: Dr. will not change my meds. Help. I can't go on. new
      #273263 - 08/02/13 02:28 PM

thanks River, i will pm you later.. yes i tried cymbalta lyrica etc. It did not help. and it was really hard to wean off of.. and the oxy sucks..never had to take it in my life until now and i hate it!
i am the type of person that likes a clear head. never liked to take any drugs besides the hiv meds and an advil here and there! and last year i was on so many meds my sister was like what's up with that.? you are not the type to take all these meds..

as it turns out i felt so in crisis yesterday , that this has gone on so long with no answer or plan.
i called my ASO and she got me into the doc yesterday!
she came with me and it went well , he told me how upset HE was that last week when i left his office i was crying...and he feels bad that no one has been able to figure out this pain syndrome...so.....yeahhhh
i am switching meds. will get them today from the pharmacy!

it may or may not be the answer but at least i feel that we are trying something..
all my inflammation tests came back and are normal. everything they test for is normal.. so ... He said that i am the healthiest hiv patient he has seen...so...what is up with this 2 years of pain?

in my mind i think it is the cocktail i am on. whether or not that is true, that is the only thing i can think of to try..switch meds.
i have a lot of choices because my resistance testing is good.

i have been on the body for years but not active in writing.

thanks and i will pm you and explain the pain thing more.


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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1738
Loc: Jersey Shore
Re: Dr. will not change my meds. Help. I can't go on. new
      #273266 - 08/02/13 05:46 PM

Please do message me. I am confused as to what type of pain you are feeling. It could very well be something that happened without being related to your meds. Shit does happen at the least likley moments.

--------------------
Look up to the Heavens for the answers to Lifes questions .

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lilfshrmn
Member

Reged: 03/07/13
Posts: 47
Loc: SE US
Re: Dr. will not change my meds. Help. I can't go on. new
      #273280 - 08/03/13 10:16 AM

Mee too. On Atripla for 8 months...Good, progressing labs...Bad sides. Cognitive impairment worst and confused by effects of infection...Witch doctor says stay the course until reconstitution failure. Yuck. I hear it gets better for some. I hope I'm one. You are not alone. Love

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Bensf
Newbie

Reged: 07/29/10
Posts: 6
Re: Dr. will not change my meds. Help. I can't go on. new
      #273425 - 08/13/13 04:50 PM

I was on Isentress for a year and a half and it made me forgetfull, unable to concentrate, unable to fall asleep, gave me a physically stressed feeling, a twitch, and easily irritated. I lead a very clean health lifestyle with no problems before starting. Within a day of switching regimen my life and behavior became normal again. Do some internet research on Isentress and you will find studies and information about psychological and neurological issues with the drug. Show them to your Doc!

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cybersecretary
Newbie

Reged: 10/25/12
Posts: 21
Re: Dr. will not change my meds. Help. I can't go on. new
      #273432 - 08/14/13 02:12 AM

hey everyone!
I am doing better! whew! what a nightmare the past 2 years!
I got support from my ASO and she called the doc and he saw us that day! I am so glad she went with me.
we changed meds taking the quad.. stribild

i felt relief within 24hrs! pain subsided, head cleared. i have been so busy the past week! i like to sew and have not in a long time..i can iron my fabric pieces! i ironed a whole basket! , and cooking and eating is better. i weeded some of my flower garden. (didn't plant veggies ths year as was too ill to start it up and maintain.. i can do laundry and fold and hang with out pain.
Helping hubby cleaning up the yard i loaded my red wagon a bunch of times and pulled it out back, pruned and tied up a lylac tree. played guitar for an hour..went to the river 3x and came back NOT tired, NOT in pain...
I laugh now and am so amazed that i can do the simple things again!

I cut back on the pain meds. but carefully because i was so pain free i forgot to take them and started having withdrawal..
i was like, i don't feel well and got sick to my stomach, and hot cold sweats..

thanks for the isentris tip. ..I had a hard time sleeping because of pain.. but also if i was kind of pain free i was up at night and sleeping till noon. amazing how a med change can take away so many things.

I was literally going crazy on Atripla. It was ok for 6 months. the dreams, but hen the mood swings started and i thought everyone was not helping out around the house to purposely make me do it all!. crying for no reason.. anxious and the doc never told me it could be sustiva . i asked if it was menopause and he had my hormones checked and they were ok but he said something about squirly thinking...never flat out said that sustiva is known for the dreams and crazy thinking. when i called and said i felt slightly suicidal he didn't change meds...it got worse and i just stopped taking it and called and told them i have to stop this drug. i felt better right away.
i didn't know it can cause the "crazies" (for lack of a better name)
and i was "in it", the crazy mode and couldn't " see " that i was in it.. my poor hubby.
what he has put up with. now he knows to "watch out" and he can let me know in the future if i start being strange...

keep all your digits crossed for me that this med change does the trick.
it has been 10 days and i feel better every day.

yeahhhhhhhhh!


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jeannie10
Newbie

Reged: 10/24/12
Posts: 21
Re: Dr. will not change my meds. Help. I can't go on. new
      #273452 - 08/15/13 03:51 PM

have you been tested for Arthritis? i get pain too and found out i have some arthritsic in my body. I am a women 65 so I guess at my age that happens. LOL.

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cybersecretary
Newbie

Reged: 10/25/12
Posts: 21
Re: Dr. will not change my meds. Help. I can't go on. new
      #273637 - 08/30/13 02:45 AM

yes RA negative. i am getting better on the med switch. still tired and some pain but sooooo much better!

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bscottmatt
Newbie

Reged: 03/09/13
Posts: 13
Re: Dr. will not change my meds. Help. I can't go on. new
      #273701 - 09/02/13 03:35 PM

I feel your pain! It took me almost a year to convince doctors to take me off my HIV meds. In the interim they had me on every antidepressant known to man but nothing helped at all. I ended up spending a week in a psychiatric ward. I couldn't sleep and I just felt miserable every minute of every day. I also was in a lot of pain due to sciatica and joints. After I came off Reyetaz Norvir and Truvada both my mental and physical pain went away. I tried Isentress and Epzicom and the mental pain came back again. Now the doctors are going to run a gamut of tests to see why this is happening. It is VERY FRUSTRATING. I feel like I'm wasting my life away.

Remember you are not breaking any laws by making the decision to stop your meds. It only takes about 3 or 4 days for them to totally leave your system. I would try to find another doctor or become adamant that you want to try to stop your meds to see if they are causing all your anguish. YOU ARE NOT CRAZY. I am having the exact same problem you are. And I know in my heart that it's NOT psychological.

Keep pushing. I wish you all the best!

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cybersecretary
Newbie

Reged: 10/25/12
Posts: 21
Re: Dr. will not change my meds. Help. I can't go on. new
      #273702 - 09/02/13 06:42 PM

I have been on Stribild for a month. pain is much better but still tired after 4 hrs after waking. but i can do some of the house work again and even simple things as blow drying my hair i can do again.yippee!!!! i am now trying to gain weight. I was 101 January. hard to shop cook eat in pain..I live in the sticks few choices for a quick take out that is affordable..

Those Attacks of pain have stopped.whew! Although the heals of my feet hurt and the tendons. i feel my walking is very limited., but more than before. I keep changing shoes,

i had a med switch a year ago after 9 months of begging. that was isentris edurant reyataz and abacavir... odd combo? anyone...?

and the attacks stopped for 8 weeks and then started again.. All that time i was not diagnosed with anything..what was happening was never explained. no referrals...I feel sore still, but have been dong more. i washed a few windows! no one had done that in the 2 years i couldn't move my body from the pain. i couldn't hang clothes on the hangers. i wrapped my wrists for support. .

I hope to pace myself and get some things in order before the winter.

.When i was on atripla i was so nuts that i couldn't see for myself or realize I was the one going nuts around the house. Blowing up over regular things. Doc wanted me to go on anti dep then He .didn't tell me that so many people have problems with sustiva part.... also before that on truvada and reyataz.. what was in that combo that made me anxiety/angry/self centered
?. i had finally got my life together and my son and step kids were just going to college. the service. refinanced and saved the house..lower payments..everything was good.. happy ..

am trying to find a common denominator in the last 3 years of meds that causes this pain. and the docs only see you once in a while and push the lexapro.



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