Author Topic: Immune Reconstitution Syndrome (Read 6475 times)

bryonut · « **on:** May 25, 2007, 12:42:44 am »

It is official I am now bitter and angry.

I have been sick as a dog and in and out of the hospital as of the late. I have had what feels like gallons of blood drawn, had every fluid sampled from my body, poked, prodded, quarantined (they suspected I had TB -- that was fun), been put on restricted diets, x-rayed, scanned and the conclusion: Immune Reconstitution Syndrome.

It was a painful, humiliating and frustrating process to reach this conclusion. How common is it? Will it eventually resolve itself?

bry
the "broken" bear

xyahka · « **Reply #1 on:** May 25, 2007, 01:38:19 am »

Hi, i am sorry to hear this. i am not wise in this subject, but i will tell you this.... i know you can handle it and you will be fine. I wish you the best and you will be in my prayers.

Juan Carlos

SASA39 · « **Reply #2 on:** May 25, 2007, 02:40:03 am »

Immune Reconstitution Syndrome is a thing that can ocure anytime when you have a sudden jump in your CD4 cells .Usuall time frame for IRS or IRIS or IRD ( you can try google it through www.thebody.com or Google with HIV ) is from 4-12 months and it can cause a variety of symptoms sometimes so diverse that even a doctors cannot concluse that it is IRS at the first place.

Al
( who wanted to continue , but knows that there are much bigger aces in this field on the body or net or here than he is )

J.R.E. · « **Reply #3 on:** May 25, 2007, 07:34:23 am »

Hello ,

Here is some addtional info, perhaps you may find it useful. I had posted it before ;

What is immune reconstitution syndrome?

It sounds good so why did LZ have another severe eye infection? Let's take a look at this odd syndrome and try to make some sense out of it. The first step is to understand the immune system.
Immune System Basics

The body has a built in defense mechanism to fight off infection and illness. The body's immune system is comprised of several types of cells and processes that recognize and fight invaders such as bacteria, parasites and viruses. Unfortunately, in people infected with HIV, the immune system is damaged, making it more difficult for the body to fight off infection. How can we tell how healthy the immune system is? The answer is simple...by looking at the CD4 count. The higher the CD4 count the stronger the immune system.

How Do We Know the Immune System is Working?
When an infectious organism enters the body, a series of reactions occur that signal the immune system is working to fight off the infection. The reactions are collectively known as inflammation. Those inflammatory signs that the immune system is working include:

fever
swelling at the site of the injury or infection
redness of the site
thick drainage and discharge from the site of infection
warmth and pain at the site
In a person whose immune system has been damaged by HIV, many if not all of the signs of immune system function will be absent.

What Is Immune Reconstitution?
Studies have shown that in the presence of HIV medications, the immune system can repair itself. This immune reconstitution means the body is better able to fight off infections that would otherwise infect the person. As the HIV is controlled by medications, the body's CD4 count will rise, indicating the immune system is stronger.

So...What is Immune Reconstitution Syndrome?

Remember, if the body's immune system is damaged by HIV, the inflammatory process necessary for healing will not be present. There will be no fever, redness, swelling etc. in the presence of an infectious organism. That inflammatory process will return as the immune system is reconstituted. Take our example of LZ and his eye infection. Antibiotic treatment killed off much of the infectious organism responsible for the eye infection. Because LZ's immune system was damaged, the was no inflammatory process present...no redness, swelling, etc. When the HIV medications strengthened his immune system, the body sensed the remaining infectious organism in the eye, left behind after the antibiotic treatment was completed. Sensing the organisms, the newly reconstituted immune system triggered an inflammatory response, resulting in swelling, redness, discharge from the eye and fever. While LZ's immune system was healthier, his eye infection returned...this is the irony of immune reconstitution syndrome.

Is Immune Reconstitution Serious?
While immune reconstitution syndrome signals a healthier immune system, it can be a serious, sometimes fatal condition. Depending on the infection present, aggressive treatment is necessary to prevent serious illness. Common infections present in immune reconstitution include

PCP pneumonia
herpes
CMV infections
MAC infections
apthous ulcers in the mouth
tuberculosis

What Can Be Done About Immune Reconstitution Syndrome?

Again, reconstituting the immune system is a good thing and while that process is desirable, the infection and inflammatory process present in immune reconstitution syndrome must be addressed. Treatment can include:

Continuation of the current HIV medication regimen.
Antibiotic or antiviral medications to treat the infection.
Steroids to temporarily suppress the inflammatory process.

Immune reconstitution syndrome is a complicated and confusing issue that has surfaced since the advent of HIV medications. If your doctor suggests you have reconstitution syndrome, ask a lot of questions and understand the syndrome and the plan of care completely before leaving his or her office.

Hope this is helpful----------Ray

aztecan · « **Reply #4 on:** May 25, 2007, 10:57:46 am »

Hey Bry,

Sorry this has happened to you. On the bright side, it means your immune system is on the mend, but as Ray posted, it can be dangerous.

What is your doc doing and did he/she explain this to you?

Immune Reconstitution Syndrome is one of the arguments for starting HAART earlier rather than later - not that does you any good at this point.

I hope you and your doc are keeping a close eye on this. Let us know how things progress.

HUGS,

Mark

BT65 · « **Reply #5 on:** May 25, 2007, 11:46:02 am »

This is very interesting. I've never heard of it before here.

SASA39 · « **Reply #6 on:** May 25, 2007, 02:11:13 pm »

http://www.thebody.com/content/art6056.html

bryonut · « **Reply #7 on:** May 25, 2007, 03:26:45 pm »

Quote from: aztecan on May 25, 2007, 10:57:46 am

What is your doc doing and did he/she explain this to you?

Immune Reconstitution Syndrome is one of the arguments for starting HAART earlier rather than later - not that does you any good at this point.

I hope you and your doc are keeping a close eye on this. Let us know how things progress.

Hey Mark, thanks for the message. IRS is a very tricky thing. I am very fortunate to have one of the best HIV docs in my state. She has been very helpful in getting me thru this with education and treatment. I agree there are many advantages to starting HAART early. I was not aware that I was HIV+ until I ended up in the hospital with PCP. At that point my cd4s were at 1 with a very high VL.

What has been most frustrating for me is that I have not been able to really talk to someone who has experienced it. It has been less than a year since i was diagnosed and Ill be honest I'm still creeped out by it.

Luckily I stumbled upon these forums and now have a place to turn to for answers/advice.

Thanks to all!

Bry
POPPERS RULE!

Matty the Damned · « **Reply #8 on:** May 25, 2007, 05:17:31 pm »

Hey Bry!

Sorry to hear about the IRS. Matty the Damned considers it most unfair and intends to pout and sulk on your behalf.

MtD

bryonut · « **Reply #9 on:** May 25, 2007, 05:28:13 pm »

Matty -- thanks for the message. I have decided that it is unfair, damnit. I mean come on, they poked me and sucked out my fluids and not even so much as a phone call the next day? I feel used. They didn't even let me bring my poppers.

keep hydrated,
bry

Matty the Damned · « **Reply #10 on:** May 25, 2007, 05:54:37 pm »

Outrageous, darling.

As you would know Matty the Damned is a firm believer in poppers and their power to heal all ills. Obviously you weren't using enough poppers.

Poppers for all!

MtD

bryonut · « **Reply #11 on:** May 25, 2007, 06:17:35 pm »

Quote from: matty.the.damned on May 25, 2007, 05:54:37 pm

As you would know Matty the Damned is a firm believer in poppers and their power to heal all ills. Obviously you weren't using enough poppers.

I have just placed an order for 20 bottles of the healing vapors. I will definitely seek out more "healing sessions" with my poppers. Maybe I can put together a "healing" group session this weekend... it is after all a holiday weekend here in the states.

YAY POPPERS!

keep on suckin,
bry

whizzer · « **Reply #12 on:** May 25, 2007, 06:52:55 pm »

Quote from: bryonut on May 25, 2007, 06:17:35 pm

I will definitely seek out more "healing sessions" with my poppers.

Be careful. I've read on these very pages they'll make your nose fall off.

-Whizzer
(who was hospitalized last year with IRIS, and feels your pain)

bryonut · « **Reply #13 on:** May 25, 2007, 07:06:24 pm »

Quote from: whizzer on May 25, 2007, 06:52:55 pm

Be careful. I've read on these very pages they'll make your nose fall off.

Will do Whizzer, i will explore other methods of delivery of the healing vapors.

I hope you are doing much better these days

snort, drink and be merry!
bry
who intends on keeping his nose

sdcabincrew74 · « **Reply #14 on:** May 25, 2007, 07:52:13 pm »

Hi There,

Sorry you went through all that. So did I. About 4 weeks after starting HAART, my CD4's had shot from 22 to 190. All of the sudden a lymph node on my neck swelled up to the size of a baseball. For the life of them, they could not figure out why. I had more tests run than I thought possible, was given more types of drugs than I thought possible and was in and out of the hospital for it. Eventually, they sliced into me to get a piece of the lymph node, when they cut into it, it kind of deflated. They tested it for everything under the sun, NOTHING, not a single thing could they find wrong. I now have a nice scar on my neck. I hate IRS!

SD (who hates the scar on his neck because he is vain)

egello · « **Reply #15 on:** May 25, 2007, 09:13:29 pm »

I haven't experienced any IRS yet,,, but maybe my late dry skin and itchiness has something to do with it...

sdcabincrew74 · « **Reply #16 on:** May 25, 2007, 10:17:10 pm »

Egello,

Not everyone experiences IRS. In fact, most do not I think.

SD (who has butt pain right now)

bryonut · « **Reply #17 on:** May 26, 2007, 01:27:02 am »

Hey SD

I completely understand what you are talking about... it is a very frustrating process to be put thru to get the generic diagnosis.. IRS.
It is not common for people starting HAART to experience IRS from what I have learned.

Egello,

Dryness and itchy skin can come from a number of things. Skin is greatly impacted by your immune system. It is common to experience rashes, dryness and so on. This can be attributed to your meds, climate, hydration, etc. If it is something that is bothering you I would suggest talking to your MD about it to see if there is something s/he would recommend to soothe your skin.

SD, hows it going now, other than your recent surgery.

DRINK IT!
bry

sdcabincrew74 · « **Reply #18 on:** May 26, 2007, 03:39:08 am »

Bryonut,

All is well after two years CD4 ranges from mid 400's to mid 600's and VL is undetectable. No pressing health concerns, although I do need to lose 20#'s and quit smoking, LOL. I swear, meds make me fat.

SD

BrooklynGuy · « **Reply #19 on:** May 26, 2007, 06:54:36 am »

Quote from: sdcabincrew74 on May 25, 2007, 07:52:13 pm

About 4 weeks after starting HAART, my CD4's had shot from 22 to 190. All of the sudden a lymph node on my neck swelled up to the size of a baseball.

The exact same thing happened to me. In fact, as they were testing the swellling, I ended up in the hospital because in addition to the mess on my neck, they suspected TB now (as if I did not have enough to deal with being recently diagnosed) so they threw me into isolation in the hospital where they did all sorts of testing for TB and they found out it was MAC. That was June 2005. Fast forward to late March of this year. I was feeling a little achy and listless one Sunday and my partner (flight attendant) was on a trip to San Francisco. I called in sick Monday morning and went back to bed. My partner got home after returning on the red eye and went to bed. He woke up around 1pm to find me unconscious and foaming at the mouth. Summon the ambulance and got me to the hospital to find out I had encephalitis - probably due to IRIS.

I wonder if those of us lucky to be afflicted with IRIS in addition to HIV will be subject to these OI's from time to time even though our tcells are increasing and our viral loads are undetectable.

I nearly did not survive the bout with the encephalitis!

sdcabincrew74 · « **Reply #20 on:** May 26, 2007, 05:29:23 pm »

Your partner is a flight attendant? So am I :-)

I have not had anything happen since then (knock on wood or if you are down under, hold wood). Hoping not to either!

bryonut · « **Reply #21 on:** May 26, 2007, 07:08:32 pm »

Well, lets keep our fingers crossed that we will all be blessed with good health

Hey SD I work for an airline as well. I work in interline relations -- not nearly as glamourous as inflight but the travel benefits and pay are good.

sdcabincrew74 · « **Reply #22 on:** May 26, 2007, 08:41:09 pm »

Quote from: bryonut on May 26, 2007, 07:08:32 pm

Well, lets keep our fingers crossed that we will all be blessed with good health Hey SD I work for an airline as well. I work in interline relations -- not nearly as glamourous as inflight but the travel benefits and pay are good.

The glamour is long gone. Now it is about slinging coca-cola and getting people to shut off their damn cell phones. I still would not trade it for the world. And, the benefits, nothing beats the benefits.....

Interline agreements, I bet we have some with you

Wishing you the best so you do not have any more IRS.

SD (just a sky slut hoping to have no more IRS)

Iggy · « **Reply #23 on:** May 27, 2007, 10:44:36 am »

I either never heard of this before or just ignored it, but it is a twisted thing. Another reason to can't wait to start meds $:-\$

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Author Topic: Immune Reconstitution Syndrome (Read 6475 times)