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Author Topic: Vision issues and Sustiva rash - related maybe?  (Read 2713 times)

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Offline Londonguy

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  • Posts: 104
Vision issues and Sustiva rash - related maybe?
« on: May 16, 2007, 07:51:41 AM »
Hey guys, hope everyone is well.  Not posted in a while but, predictably, nothing is ever simple with this virus and I'm not really sure what to think  ???

First off, I'm still getting a rash from the Sustiva over 3 months after starting it.  At least we assume it's the Sustiva anyway.  It's very mild, non-itchy and seems to come and go almost at random on the inside of my arms, top of my chest and front of my thighs.  I've talked with my doctor about it a couple of times and, because of the good results I've had since starting the meds, we decided to not let what is in all honesty quite a minor issue in my life stop me from taking the meds.  But it's getting to the point now where I'm a bit concerned.  Clearly I have some kind of allergy to this thing and, even if it's incredibly minor, surely that can't be good for me.  But then I'm not sure I want to switch to PIs  :-\

Which kinda leads me into something which has been dominating my thoughts and affecting my life the past few months, and that's my vision.  I have no idea if it's related to HIV or the meds or whether my eyes have just taken a turn for the worse on their own but I'm getting quite worried now.

Basically, a week after coming out in a rash on the meds and taking steroids and antihistamines (so roughly 3 weeks after starting meds in total), I developed some floaters, roughly ten in total between my eyes.  Since then my eyes just haven't felt right.  They feel heavy and under a bit of pressure, they water a little sometimes, my right eye feels a bit sticky, although there is no residue to suggest conjunctivitis.  The floaters themselves are not that noticeable inside but when I go outside in the day I feel like I'm playing a constant game of 'how can I position my vision so I don't have to see these things floating in front of my eyes?'  And when I look up at the sky my eyes look weird.  It's hard to describe but, aside from making the floaters more noticeable, it seems like I can see the fluid moving inside my eye and that there are loads of little specks of light constantly darting around in front of my eyes, like little light bugs or something.  Basically it's gotten to the point where I try to avoid going outside during the day or spend any length of time in a bright room because I find it distracting and depressing.

So I brought this up with my HIV doctor and she's referred me to an opthamologist but my appointment isn't for another month, one of the joys of the NHS.  So to put my immediate fears to rest I went to an optician who did a dilated exam on my retina and said she couldn't see anything wrong and that my retina looked perfectly healthy which relieved me a little, although I'm still anxious to see an opthamologist at the hospital.

Worryingly, a couple of days ago, I had another incident with my eyes.  I was looking at the floor when I saw something out of the corner of my eye, and when I looked up I saw a lot of very bright golden sparks descend on my vision for about 15 seconds and then disappear.  I've never seen anything like it and it's put even more fear into me now and I don't want to wait a month to get my eyes checked at the hospital but I don't know what else I can do.

I don't know what to think now.  I was worried about CMV initially but I don't think my CD4 has ever been low enough for it truly to be an issue and one would expect to see significant retinal damage if it was the case.  I'm suspicious of the fact that all this trouble with my eyes - the floaters, the heaviness and pressure, the sticky feeling, the sparks of light - all happened after starting meds, specifically not long after getting a rash.  I've never had an allergy before but I'm wondering if maybe the slight allergy I have to Sustiva is causing me problems.  Or maybe it's all a big coincidence and it isn't HIV or meds related at all. That's the curse of having HIV and taking meds, you don't know when something is related or not.  I don't really know what to do for the next month, I'm sick of my eye problems consuming my thoughts and affecting my life. 

Offline penguin

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Re: Vision issues and Sustiva rash - related maybe?
« Reply #1 on: May 16, 2007, 09:04:14 AM »

3months on, still rash...this,really not on. I know CW likes their sustiva & all, but seems clear this one isn't for you. I know it can be bit daunting,when you see somehting working, to think about switching - but I don't see any reason why you shouldn't expect as good results from another combo, like reyataz + truvada etc (minus need for antihistamines, etc)

the vision, i imagine that must be horrible, understandably scary when it happens. I suspect this is all related to the meds (prob sustiva,possibly kivexa though) as the timing is so linked. The optician, that is reassuring that she didn't find anything obvious (again,perhaps another clue that this is meds related,rather than something structural/physical going on)
I guess you have a few options...

- wait a month for your appointment, remain on same combo, etc

- head down to CW, get a lot more, er, persistent about getting this sorted asap

- take yourself to Moorfields/Western Eye hospital A&E (M'fields also has nurse-led phone helpline,020 7566 2345, from 8.30am to 4.30pm, Monday to Friday) if you feel this is getting worse/symptoms are changing

really hope you can get things sorted,soon - this, not something your dr should expect you to just put up with




Offline aztecan

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Re: Vision issues and Sustiva rash - related maybe?
« Reply #2 on: May 16, 2007, 09:59:13 AM »
Hey Londonguy,

When you visited the optician, did he/she do a pressure test on your eyes? That is the test used for glaucoma and is important.

As for the floaters, sparks, etc., I don't know if it is med related, but with this stuff (Sustiva) I wouldn't be surprised.

I think Penguin had the best advice.

Good luck and let us know what you find out.


"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline milker

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Re: Vision issues and Sustiva rash - related maybe?
« Reply #3 on: May 16, 2007, 10:04:12 AM »

I had a similar vision scare a couple of days ago: http://forums.poz.com/index.php?topic=12151.0

I think that overall my vision is having a problem, so I will get an appointment too. I'm not on meds. I don't think in my case it's HIV related.. maybe supplements, or just getting old  >:(

mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

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Offline SASA39

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Re: Vision issues and Sustiva rash - related maybe?
« Reply #4 on: May 16, 2007, 10:05:49 AM »
Go and see an eye doc.
Just to be shure .............because  simptoms that you have stated are normal for few issues...................................
« Last Edit: May 16, 2007, 01:01:55 PM by SASA39 »
12. Oct`06.  CD4=58 %  VL not issued
25.Dec.`06.         203     VL= 0
25.Dec`06.- 19.Oct`16 :
various ups & downs- mostly ups - from 58-916 and back in #CD and few blips in VL.
19.Oct`16     CD4=644      VL=0

Offline newt

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Re: Vision issues and Sustiva rash - related maybe?
« Reply #5 on: May 16, 2007, 12:38:27 PM »
Vision changes are a rare but known side effect of Sustiva.  Photosensitivity is a known side effect (skin and brightness of light). A rash after 3 months with the steroids and antihistamines is not a good outcome.

You are, to some degree, allergic to Sustiva (or perhaps the Kivexa but it seems Sustiva more likely) .

- matt
"The object is to be a well patient, not a good patient"

Offline stevevaboy

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Re: Vision issues and Sustiva rash - related maybe?
« Reply #6 on: May 18, 2007, 12:27:18 AM »
Hi Londonguy,  I had similar worries and posted about floaters a couple of months ago.  I'd always seen SOME floaters in my vision, even as a kid, but over the past couple of years they've increased dramatically.  There's no part of my vision that's not covered by floaters and light spots now and I was worried too, suspecting HIV and meds were the culprits.  Regardless of the cause, all eye exams show no signs of anything serious even though the doctor could actually see the floaters in my eyes.  I have never needed glasses and still don't, so I see well despite the constant "gnats" flying around in front of me all the time... I just swat at them sometimes! ha ha

So don't worry too much - it could be nothing just like it was for me.

Good luck - Steve

Offline budndallastx

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Re: Vision issues and Sustiva rash - related maybe?
« Reply #7 on: May 18, 2007, 07:02:09 AM »
I initially started out on Epzicom (kivexa) and Sustiva.  I developed a rash and ended up in the hospital.  At the time, everyone thought it was the Bactrim so I switched to Dapsone and was taking steroids for the supposed allergy.  Well the rash spread but wasn't itching.  The doctor surmised it was the Sustiva so we stopped that only to find out it was the Epzicom.  I  restarted Sustiva and switched to Truvada and the rash disappeared.

I know everyone is quick to jump on the bash Sustiva bandwagon but the Abacavir in Epzicom should be highly suspect as well.

Londonguy, are you having other symptoms like a low grade fever or anything ?

Also, floaters become more common in some people as they age.  I had floaters from my diabetes and had a vitrectomy which is the removal of the vitrious inside the eye.  It sounds horrible but since having the procedure done, floaters are no longer an issue for me.  It's a fairly drastic step but that is something to ask about if the floaters are bothersome.

Modified to update spelling and comment on Vitrectomy
« Last Edit: May 18, 2007, 07:06:41 AM by budndallastx »
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%)


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