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Author Topic: I really don't know where else to turn to...  (Read 4191 times)

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Offline markaj

  • Member
  • Posts: 80
I really don't know where else to turn to...
« on: March 23, 2009, 09:39:44 AM »
I'm HIV/HCV co infected.  My latest HAART combo Istentress and Truvada is doing it's stuff just fine.  I'm also on 30mg Mirtazapine daily.

I started Pegylated Interferon and Ribavirin January 2009 and have had major problems with this treatments' side effects.  In the last few weeks I've been getting really angry at nothing.  I'm always irritable and aggressive to everybody and yesterday in temper I pulled all the wooden shelving off my walls, hardly comfort to my already aching joints.  I've told my specialist in London and I got the impression he'd sooner stop my treatment than add any extra meds in the mix, so i didn't push it, I definitely don't want to quit otherwise this has all been for nothing.  He did give me a script for 4mg Lorazepam tablets to be taken, 2 in the morning and 2 in the evening.  All these pills seem to do is make me clumsy, I walk into walls etc.  I certainly don't feel any calmer and happier.  I still want to do violence to anybody that crosses my path. 

Has anybody been in this situation with the Hep C meds?  My doc says it's the Pegasys to blame.  What I really want is something I can take to (legally) completely chill me out, I've been reading up on 'antipsychotics' and 'antimatics', does anybody have experience with these?  Since my HIV diagnosis I've been seeing a NHS Psychiatrist since I tried to commit suicide and am meant to start seeing a psychologist from next week.  I am convinced there are other long term mental health issues going on with me.  I just tried to ring my social worker who is on annual leave, her colleague's number goes straight to voicemail, in desperation i just spoke to the duty CPN at the community mental health team where I'm on the books.  Any advice would be greatly appreciated.  M xx
Infected Jan 08 / diagnosed Feb 08
Feb 08 - CD4 230 (9%) VL 3.5 million
Mar 08 - CD4 440 (6%) VL 660.000
Apr 08 - CD4 420 (11%) VL 3 million
Jun 08 - CD4 200 (7%) VL 3 million
Started Kaletra/Truvada Jul 08
Jul 08  - CD4 250 (14%) VL 23.893
Aug 08 - CD4 410 (15%)  VL 4.313
Switched to Sustiva/Truvada Aug 08
Switched to Reyataz/Norvir/Truvada Sep 08
Diagnosed with Hep C, HIV meds stopped for a bit
Nov 08 - CD4 414 (12%) VL 500.000+
Started Isentress/Truvada Nov 2008
Dec 08 - CD4 381 (17%) VL 1.116
Jan 09 - CD4 534 (20%) VL <50
Started Interferon/Ribavirin Jan 09
Feb 09 - CD4 407 (24%) VL <50
Mar 09 - CD4 360 (28%) VL <50
Apr 09 - CD4 279 (30%) VL <50
Jun 09 - CD4 298 (36%) VL <50
Aug 09 - CD4 303 (35%) VL <50

Offline maddalfred

  • Member
  • Posts: 128
  • Self Portrait
Re: I really don't know where else to turn to...
« Reply #1 on: March 25, 2009, 11:30:30 PM »
Mark,

I read your post a few days ago and did not respond, thinking others with experience would and that I would have nothing new or different to say or add to what could be said.

I too, am co-infected, my latest combo is Truvada/Lexiva. I am currently not on any meds for the HCV, due to (according to my ID doc) my depression and a less than stellar CD4 count and viral load. I am sorry and disheartened to read of your problems with regard to the HCV meds, I had looked forward to being well enough to begin treatment for mine, via the regimen you describe, knowing full well how rough it could/might be. I understand from my ID doc that the Interferon treatment requires one to initially agree to a 42 week treatment schedule and hopefully be able to tough it out.

I wish I could off you some advice, some encouragement to stick it out in the hope that the outcome (remission) would make the interim bearable and not destructive to life and limb, but since I have no experience and you do, I cannot.  I only ask that you keep me (us) posted on how it is going, if you discontinue and if you get any better for it one way or the other..

hugz,

Rex
<img src=http://i269.photobucket.com/albums/jj56/maddalfred1959/Me.jpg>

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: I really don't know where else to turn to...
« Reply #2 on: March 26, 2009, 07:21:57 AM »
Hi Mark,

I'm sorry I missed your post - I was on a forum break when you originally posted.

I did the hcv treatment in 2002/03 and I experienced exactly what you're talking about. It's generally called "riba-rage" and is quite common. (riba as in ribavirin) If you Google riba rage, you'll get plenty of hits.

I dealt with it by knowing where it was coming from. I'd catch myself getting inexplicably angry and tell myself "it's not (whatever), it's just the chemicals". Sometimes I'd have to physically remove myself from the situation that was upsetting me, until I got myself back under control.

It can be frightening if you don't understand what's going on - I know it freaked me out the first time it happened, then I found out about riba rage. From then on I managed to keep it under control - for the most part. There were a couple times I yelled at someone who didn't deserve it, but I never got violent. (and believe me, I did have some violent urges on that stuff)

I never took any meds to counteract the rage or depression (I had depression too), so I can't advise on that score. I would suggest that you speak to your psych doc about what meds might help, ones that won't make you feel drugged.

Please do everything in your power to stay on this treatment. If it's successful, it will be worth having a crap year. I call my year on the treatment my "black-hole year" because it's all a haze now. I'm glad I did it though, because I'm sure it added healthy  years to my life.

Good luck. And again, I'm sorry I didn't see this sooner.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

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 mecch

  • Member
  • Posts: 11,771
  • red pill? or blue pill?
Re: I really don't know where else to turn to...
« Reply #3 on: March 26, 2009, 04:24:34 PM »
Knowledge is power to put your rage in context. Ann is correct.
Also you can practice some mindfulness meditation. The rage is free floating and needn't destroy your life or annoy those around you. 
Lorazepam works wonders and quickly. 
Lexotanil is great as well.
These are given by psychiatrist and should be monitored and help in the short term or in a pinch. Won't do much to improve your coordination, however.
The only self solution is to enlarge your awareness of the moment and the context to see that the anger isn't solving anything.  Cognitive behaviour therapy, mindfulness, any kind of method that helps you get some distance from the emotion, chemical reactions, and triggers, can help.
its not so easy, its human, and many of us have been there.
Hell I have had some HORRIBLE bosses in my life, rabid hostile people, and no medical explanation was required!  You can get through this.
« Last Edit: March 26, 2009, 04:27:45 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Dwayn20

  • Member
  • Posts: 374
  • dbscooter0@gmail.com
Re: I really don't know where else to turn to...
« Reply #4 on: March 29, 2009, 09:03:17 AM »
I have been on all types of meds in twenty some odd years.This is not the same meds you are on but had similar results on other meds.I tried to destroyed my house punch out my long time companion an wanted to commit suicide.Now they have change my meds an not had that type of rage since.But roommate will never let me forget it.By the way he is negative an don,t know how you feel when on meds.For depression I am on 120mg of Cymbalta an for the Anxiety I take Aprozolam 0.05mg three times daily.The previous past are right information is your best defence.Take One Day At A Time!!! Things will get better.
Dwayn20(Scooter)


I'm HIV/HCV co infected.  My latest HAART combo Istentress and Truvada is doing it's stuff just fine.  I'm also on 30mg Mirtazapine daily.

I started Pegylated Interferon and Ribavirin January 2009 and have had major problems with this treatments' side effects.  In the last few weeks I've been getting really angry at nothing.  I'm always irritable and aggressive to everybody and yesterday in temper I pulled all the wooden shelving off my walls, hardly comfort to my already aching joints.  I've told my specialist in London and I got the impression he'd sooner stop my treatment than add any extra meds in the mix, so i didn't push it, I definitely don't want to quit otherwise this has all been for nothing.  He did give me a script for 4mg Lorazepam tablets to be taken, 2 in the morning and 2 in the evening.  All these pills seem to do is make me clumsy, I walk into walls etc.  I certainly don't feel any calmer and happier.  I still want to do violence to anybody that crosses my path. 

Has anybody been in this situation with the Hep C meds?  My doc says it's the Pegasys to blame.  What I really want is something I can take to (legally) completely chill me out, I've been reading up on 'antipsychotics' and 'antimatics', does anybody have experience with these?  Since my HIV diagnosis I've been seeing a NHS Psychiatrist since I tried to commit suicide and am meant to start seeing a psychologist from next week.  I am convinced there are other long term mental health issues going on with me.  I just tried to ring my social worker who is on annual leave, her colleague's number goes straight to voicemail, in desperation i just spoke to the duty CPN at the community mental health team where I'm on the books.  Any advice would be greatly appreciated.  M xx

Offline markaj

  • Member
  • Posts: 80
Re: I really don't know where else to turn to...
« Reply #5 on: April 14, 2009, 12:51:21 PM »
Scooter/Rex/Ann/Mecch, I just wanted to thank you guys for the replies.  I've only just read them.  The Lorazepam tablets didn't help and I was started on Haloperidol.  Boy was that a mistake!  I ended up in casualty, very agitated, thinking i was dying.  The doses I was given were the doses normally given to patients monitored on psychiatric wards which of course I wasn't.  I also continued taking the Lorazepam, as I was told to and this made me worse.  Now I'm off all that stuff and continuing on the Hep C treatment.  Things have definitely improved for me.  I'm hoping to go back to work next week which will definitely help lift the depression.  I will have to try and keep my temper in check though although I'll end up getting the sack.  I'm halfway through the treatment now and i just keep telling myself things will keep getting better for me from here.  Thanks again everybody.  Hugs.  Mark x
Infected Jan 08 / diagnosed Feb 08
Feb 08 - CD4 230 (9%) VL 3.5 million
Mar 08 - CD4 440 (6%) VL 660.000
Apr 08 - CD4 420 (11%) VL 3 million
Jun 08 - CD4 200 (7%) VL 3 million
Started Kaletra/Truvada Jul 08
Jul 08  - CD4 250 (14%) VL 23.893
Aug 08 - CD4 410 (15%)  VL 4.313
Switched to Sustiva/Truvada Aug 08
Switched to Reyataz/Norvir/Truvada Sep 08
Diagnosed with Hep C, HIV meds stopped for a bit
Nov 08 - CD4 414 (12%) VL 500.000+
Started Isentress/Truvada Nov 2008
Dec 08 - CD4 381 (17%) VL 1.116
Jan 09 - CD4 534 (20%) VL <50
Started Interferon/Ribavirin Jan 09
Feb 09 - CD4 407 (24%) VL <50
Mar 09 - CD4 360 (28%) VL <50
Apr 09 - CD4 279 (30%) VL <50
Jun 09 - CD4 298 (36%) VL <50
Aug 09 - CD4 303 (35%) VL <50

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: I really don't know where else to turn to...
« Reply #6 on: April 14, 2009, 04:03:32 PM »
Wow Mark, who on earth gave you that huge dose of Haldol? I hope you sacked them. My jaw fell when I read what you'd been given, even before I read what effect it had on you. That doctor must be out of his tiny mind slapping you with Haldol. Sheesh!

I'm not surprised you're feeling better off the anti-psychotic/antidepressant meds. All too often docs give out scripts for these types of drugs when all the person really needs from them is information and an understanding ear. AND they never seem to monitor a patient closely enough when started on these meds. Don't get me started!

About work and your temper and ability to function in general - is it possible to let the people you work with know that the course of medication you're on makes you short-tempered, and you might need to walk away now and then?

As for being sacked over things that are going on due to your health, you should be covered under the Disability Discrimination  Act of 2005. You should qualify, please see page 5, section 18 (3) (here) where it says:

Quote

Subject to sub-paragraph (2), a person who has cancer, HIV infection or multiple sclerosis is to be deemed to have a disability, and hence to be a disabled person.


some additional links:

http://www.direct.gov.uk/en/DisabledPeople/RightsAndObligations/DisabilityRights/DG_4001068

http://www.opsi.gov.uk/Acts/acts2005/ukpga_20050013_en_1

http://www.dwp.gov.uk/employers/dda/whats_in.asp

http://www.direct.gov.uk/en/DisabledPeople/RightsAndObligations/DisabilityRights/DG_4001069

http://www.nao.org.uk/careers_and_jobs/diversity/nao_disability_equality_scheme/definition_of_disability_-_the.aspx

Good luck with the job, Mark!  I hope you keep feeling better and everything in general improves for you.

Hugs,
Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

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 maddalfred

  • Member
  • Posts: 128
  • Self Portrait
Re: I really don't know where else to turn to...
« Reply #7 on: April 16, 2009, 12:09:35 AM »
Scooter/Rex/Ann/Mecch, I just wanted to thank you guys for the replies.  I've only just read them.  The Lorazepam tablets didn't help and I was started on Haloperidol.  Boy was that a mistake!  I ended up in casualty, very agitated, thinking i was dying.  The doses I was given were the doses normally given to patients monitored on psychiatric wards which of course I wasn't.  I also continued taking the Lorazepam, as I was told to and this made me worse.  Now I'm off all that stuff and continuing on the Hep C treatment.  Things have definitely improved for me.  I'm hoping to go back to work next week which will definitely help lift the depression.  I will have to try and keep my temper in check though although I'll end up getting the sack.  I'm halfway through the treatment now and i just keep telling myself things will keep getting better for me from here.  Thanks again everybody.  Hugs.  Mark x

Mark,

I can only re-iterate what Ann has said. I can't believe you were given Haldol, even though you reported such an extreme reaction to the Interferon. Back in the day when I was institutionalized for one of my worst depressive spells, the effect of Haldol on the "inmates" was what was referred to as the "thorazine shuffle" since the effect was very similar. I am surprised that you were able to function above the level of a walking zombie while taking it.

Having said all that, I am delighted to learn your condition seems to have improved somewhat and look forward to more reports from you with more good news.

Stiff upper lip and all that stuff to you, my friend. Keep us posted..

Rex
<img src=http://i269.photobucket.com/albums/jj56/maddalfred1959/Me.jpg>

 


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