Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
September 02, 2014, 11:05:42 AM

Login with username, password and session length


Members
Stats
  • Total Posts: 636877
  • Total Topics: 48342
  • Online Today: 304
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 4
Guests: 191
Total: 195

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: DDI RETINITUS  (Read 1399 times)

0 Members and 1 Guest are viewing this topic.

Offline Theyer

  • Member
  • Posts: 2,497
  • Current ambition. Walk the Dog .
DDI RETINITUS
« on: January 07, 2014, 02:52:01 PM »
So while I was in Hospital in Dec every time I had even a half point over in my temp my eyes felt swollen at its worst they felt swollen, ached and hurt abating when the temp did.
 
So eye clinic today with the Boss man, first for me, and the news that he "strongly suspects in fact I am sure" I have DDI retinitus. That is what caused the scaring at the back off the cornea. Plus my tear duct's are dry and I have a cosmetic regime that would exhaust a drag Queen, not good for someone who slaps factor 30 on when the sun shines and buys whats on offer for shower gel.
The consultation went on so long that I am back on Thursday about this Dec stay.

Any body heard off this?


Bit freaked but too knackered to give it my hysterical best. Eye Doc Appointment in 6 months instead off a year now.

DDI RETINITUS
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Miss Philicia

  • Member
  • Posts: 24,020
  • celebrity poster, faker & poser
Re: DDI RETINITUS
« Reply #1 on: January 07, 2014, 02:56:40 PM »
Awesome -- so you're having an issue surfacing from a drug that was the second HIV medication approved in 1991. Bodes well for the rest of coffin chasers now doesn't it?

A quick google shows this paper published a few months ago on the issue, but it seems like it's not come up a lot (yet):

http://www.jscimedcentral.com/Ophthalmology/ophthalmology-1-1011.pdf
"Iíve slept with enough men to know that Iím not gay"

Offline wolfter

  • Member
  • Posts: 4,460
Re: DDI RETINITUS
« Reply #2 on: January 07, 2014, 03:13:07 PM »
Are you still on DDI? 

I hope you can get to the bottom of this and not let it get worse.  I ignored by gradual vision loss until it was almost too late.  I mostly recovered from my bout of blindness.  I regained better vision than they predicted.  Albeit it with trifocals. 

Best wishes
Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Miss Philicia

  • Member
  • Posts: 24,020
  • celebrity poster, faker & poser
Re: DDI RETINITUS
« Reply #3 on: January 07, 2014, 03:19:17 PM »
What is your "cosmetic regime" comment mean, Michael?
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,915
Re: DDI RETINITUS
« Reply #4 on: January 07, 2014, 03:40:28 PM »
Wow, have not heard of this, but will be reading the paper Ms. P. linked to.   I hope they can get this taken care of, Michael.  So, so sorry to read about.  Vision is so important.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Miss Philicia

  • Member
  • Posts: 24,020
  • celebrity poster, faker & poser
Re: DDI RETINITUS
« Reply #5 on: January 07, 2014, 03:51:26 PM »
I was on DDI for years plus my mother had retinitis and eye issues run in my (maternal) family. I actually have an eye appointment on Thursday but I'm not stressing about this until anything abnormal is detected. I've been adhering to annual check ups for my eyes not for the past three years.

Anyway, I'm always crestfallen when new things pop up with Michael because he's already held together with glue and scotch-tape and deserves some time with no health issues instead of more. I am entirely empathetic to the continual onslaught of specialists for this and that as I'm in the same boat, but several degrees less than Michael.

Thinking of you often though, Michael -- too bad you live so far away.
« Last Edit: January 07, 2014, 03:53:53 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline mitch777

  • Member
  • Posts: 3,462
Re: DDI RETINITUS
« Reply #6 on: January 07, 2014, 06:10:47 PM »
Michael,

Sorry to hear this newest mess. Ugh! I agree with Miss P., you have been through the wringer and deserve a break.  :-*

I was on DDI for awhile. Can't remember when or how long. In the past 6 months or so my eyes have been very dry but sometimes tear (right eye only). Not sure if it is related. Anyway, I'm hoping your eye doc can help. 6 months wait?
31 years hiv+ (oct. 2013) with a curtsy.

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: DDI RETINITUS
« Reply #7 on: January 07, 2014, 06:13:03 PM »
YIKES!  :o  DDI nasty stuff, I took that from 89 to 92  ???

HUGS

DEN

"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Theyer

  • Member
  • Posts: 2,497
  • Current ambition. Walk the Dog .
Re: DDI RETINITUS
« Reply #8 on: January 07, 2014, 06:19:14 PM »
What is your "cosmetic regime" comment mean, Michael?

The dry /clogged tear duct thing is to be treated by !} Flax Oil Tabs x2 day   2] Hot flannel head over closed eye for 10 Min's each  x 2 day   3 ] 50 ---50  water and baby shampoo mix use Q tip to clean area where lash meets lid   4] Lacri -Lube eye ointment applied under bottom lid both eyes at night  5] Carmellose Sodium 0.5% eye drop 2 drops 6 yes 6 times a day .

Now I get my drugs taken in the 24 hour period without fail but I am not a great time keeper and a Brazilian Boyfriend told me off and said I was a hopeless homosexual cause I did not moisturize morning noon and night. He was v.angry about this and not best pleased that I reacted by falling on to the floor laughing , he had not experienced a lot off people laughing at him, ever,----------- anyway does that clarify , So the above will take some effort one that I do not have much off a foundation to build on apart from bath/wash teeth x2 a day.

I have known about the cateracts and scared cornea for about 4 year plus but this is the first mention off DDI Ret. I have a lot off ? to ask , the good thing is I took very well to the Doctor/ surgeon / consultant , he spent 40 mins with me , the waiting room was packed there was a lot off him staring through lenses into my eyes saying look left ,down a bit , bit more. Plus all the new info however I will get a e-mail together and send it to him , so any ? you have I could include.

The Doc was very good about my intense fear off losing eye sight , was assistant to David Bailey cause he did not know wether he wanted to be a Doctor or Photographer, and used a beautiful Mount Blanc pen .

m {feeling little }
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Theyer

  • Member
  • Posts: 2,497
  • Current ambition. Walk the Dog .
Re: DDI RETINITUS
« Reply #9 on: January 07, 2014, 06:23:56 PM »
Michael,

Sorry to hear this newest mess. Ugh! I agree with Miss P., you have been through the wringer and deserve a break.  :-*

I was on DDI for awhile. Can't remember when or how long. In the past 6 months or so my eyes have been very dry but sometimes tear (right eye only). Not sure if it is related. Anyway, I'm hoping your eye doc can help. 6 months wait?

No 6 months is the next appointment to check how things are going, it used to be yearly. I am fine with this if he was worried about something developing it would off been less .
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Theyer

  • Member
  • Posts: 2,497
  • Current ambition. Walk the Dog .
Re: DDI RETINITUS
« Reply #10 on: January 07, 2014, 06:30:16 PM »
Awesome -- so you're having an issue surfacing from a drug that was the second HIV medication approved in 1991. Bodes well for the rest of coffin chasers now doesn't it?

A quick google shows this paper published a few months ago on the issue, but it seems like it's not come up a lot (yet):

http://www.jscimedcentral.com/Ophthalmology/ophthalmology-1-1011.pdf

Thanks so much David , cannot give it my best at the moment. But will . You are a great one for routing out the info for folks.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Theyer

  • Member
  • Posts: 2,497
  • Current ambition. Walk the Dog .
Re: DDI RETINITUS
« Reply #11 on: January 08, 2014, 04:52:10 AM »
Are you still on DDI? 

I hope you can get to the bottom of this and not let it get worse.  I ignored by gradual vision loss until it was almost too late.  I mostly recovered from my bout of blindness.  I regained better vision than they predicted.  Albeit it with trifocals. 

Best wishes
Wolfie

No Wolfie , I was on it on a named patient basis as part off the first combo treatment,s in the UK. I was very lucky to get access to it. It did mean the end off having a very trim athletic body as lipo set in v,fast . I think I was on it for about 2 to 3 years and it was changed with the first bout off Hodgkin but that could be all wrong.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: DDI RETINITUS
« Reply #12 on: January 08, 2014, 06:54:36 AM »

Plus all the new info however I will get a e-mail together and send it to him , so any ? you have I could include.


Ask him if optic neuritis is of any concern for you. Evidently, DDI has also been implicated in the development of this problem.

http://en.wikipedia.org/wiki/Optic_neuritis

http://www.thebody.com/Forums/AIDS/SideEffects/Q144384.html?ic=2003


(Yes, I know what forum I'm in. I'll slap myself silly and sit on the naughty-step for ten minutes after I post.)
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 Theyer

  • Member
  • Posts: 2,497
  • Current ambition. Walk the Dog .
Re: DDI RETINITUS
« Reply #13 on: January 08, 2014, 07:57:26 AM »
I will after I have reported you to the moderators. For some reason "slap myself silly" makes me giggle , I defy anyone to say it out loud without at least smiling.

So slap myself silly might just be this weeks phrase to go along with this weeks word given by a dear friend 'HUGLES' great ain,t it   HUGLES.

so  HUGLES TO ALL

m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Online Jeff G

  • Administrator
  • Member
  • Posts: 11,411
  • How am I doing Beren ?
Re: DDI RETINITUS
« Reply #14 on: January 08, 2014, 08:35:49 AM »
I slapped myself silly allot during puberty and liked it . 

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.