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Author Topic: IRIS - MAC  (Read 3609 times)

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Offline ATLpozbrother

  • Member
  • Posts: 26
  • I'm Sick and tired of being Sick and tired.
IRIS - MAC
« on: April 27, 2012, 08:55:29 pm »
I posted on here stating I developed swollen lymph nodes (left of chin & under chin), most responded stating I have IRIS. Found a great ID doctor who referred me to an ENT surgeon who ordered a CAT scan, did needle biopsy, CAT scan showed lymph nodes, no surprise, needle biopsy like most was inconclusive. ENT recommended surgical excession, the most conclusive determination to rule out Lymphoma, the lymph node under my chin grew the size of an orange, it was so hard to go to work daily, the nodes appeared 2/29. The doctors performed surgical excession Thursday morning and today the ID/ENT doctors informed me they ruled out Lymphoma...hip hip hooray, but diagnosed me with Mycobacterium avium complex (MAC).  The removal of the large lymph node was done great cosmetically, but the lymph node to the left was partially removed to assure there was no nerve damage.  The meds will take care of the remaining swelling.  My issue is the meds that were subscribed, they are as follows:
Pyrazinamide 500mg 3X/daily, Zithromax 500mg 1 x/day (M, W, F), Isoniazid 300mg 1x/day, Rifabutin 150mg 1x/ day & Ethambutol 400mg 3x/a day.  While MAC is linked to TB & is very common according to most AIDS literature linked to IRIS which occurs shortly after starting anti-viral meds.  IRIS occurred like text book literature in my case, 60 days after I started meds the nodes started to swell. I think the doctor has over prescribed the meds.  I was instructed to take all the meds today as a part of my one day hospital discharge, when I got home a blood clot formed in my left eye.  The doctor warned me that Ethambutol is linked to side effects impacting the eye, hence I looked at treatments for MAC/TB and it appears this is WAY over the prescription regimen.  Please help. By the way, my meds took about 90 days or less to push my viral load to undetectable.
Logged
10/11 cd4 23, VL 125000-hospitalized PCP
1/12 started Gilead vaccine trial-The Quad Pill
1/12 cd4 40,   2% VL 445,000
2/12 cd4 153, 6% VL 43
3/12 cd4 248, 8%  VL 1023
4/12 cd4 215          VL 99
4/22 cd4 208, 8%  VL undetectable.
5/12 cd4 168, 9%  VL undetectable
9/12 cd4 176, 10% VL undetectable

Offline Hellraiser

  • Member
  • Posts: 4,155
  • Semi-misanthropic
Re: IRIS - MAC
« Reply #1 on: April 27, 2012, 08:57:59 pm »
Good luck with the MAC and IRIS.  Have you called your doctor to make sure you're taking the right dosage?  If you distrust him then it's time to get a second opinion.
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Offline ATLpozbrother

  • Member
  • Posts: 26
  • I'm Sick and tired of being Sick and tired.
Re: IRIS - MAC
« Reply #2 on: April 27, 2012, 09:13:33 pm »
Thanks for your response.  The issue is not a distrust of the Infectious Disease doctor, but more of a response from somone who may have gone through MAC and may have taken this regimen, or someone who may have taken another regimen. This doctor is a great infectious disease doctor who referred me to  a great ENT surgeon who ruled out Lymphoma as they worked as a team.  I have been to many doctors seeking answers, so far he has been on target.  I am seeking advice from someone who has been down this road, not necessarily looking for a response go to another doctor at this juncture from someone who have not been through this or has no knowledge of the regimen.
Logged
10/11 cd4 23, VL 125000-hospitalized PCP
1/12 started Gilead vaccine trial-The Quad Pill
1/12 cd4 40,   2% VL 445,000
2/12 cd4 153, 6% VL 43
3/12 cd4 248, 8%  VL 1023
4/12 cd4 215          VL 99
4/22 cd4 208, 8%  VL undetectable.
5/12 cd4 168, 9%  VL undetectable
9/12 cd4 176, 10% VL undetectable

Offline ATLpozbrother

  • Member
  • Posts: 26
  • I'm Sick and tired of being Sick and tired.
Re: IRIS - MAC
« Reply #3 on: April 27, 2012, 10:16:47 pm »
Confirmed Treatment Regimen:

http://www.aidsetc.org/aidsetc?page=cg-623_mycobacterium_tb#S5.2.3X

And just when I thought the 4 pills a day was too much....Pray for me, just been through too much since October 2011.  I just dont know how much more I can take.  Outside of typing on this site, I have no one to talk to, not sure if I could talk to anyone at this point without breaking down. 

Logged
10/11 cd4 23, VL 125000-hospitalized PCP
1/12 started Gilead vaccine trial-The Quad Pill
1/12 cd4 40,   2% VL 445,000
2/12 cd4 153, 6% VL 43
3/12 cd4 248, 8%  VL 1023
4/12 cd4 215          VL 99
4/22 cd4 208, 8%  VL undetectable.
5/12 cd4 168, 9%  VL undetectable
9/12 cd4 176, 10% VL undetectable

Offline nixsmail

  • Member
  • Posts: 75
Re: IRIS - MAC
« Reply #4 on: April 27, 2012, 11:44:19 pm »
this may not be what you're looking for but in oct of 2010 i had a reactive tb test. have been on hiv meds for quite a while before that and really didn't experience any iris at least none that was noticeable. anyway the diagnosis at that time was inactive tb AND mac. the sputum tests showed mac but no active tb. so i must have acquired it somewhere along the way. i also am unsure of the exact medication that i was on but the ones you cited look familiar, but only had to take all once a day and am still on a preventative dose for the mac of azithromycin 500mg and ethambutol 400mg. i'm sure that the others were Pyrazinamide one pill per day, Zithromax, one per day, and Rifabutin i think one pill per day. i ended up taking 5 extra meds for about 8 months total. so you might want to check with the doc about the dosage levels. hope you work things out.
Logged
09/05/07 Officially diagnosed +4yrs at the time
11/06/07 CD4 624 (18%) VL 43,200
05/04/09 CD4 272 (15%) VL 521,190
06/10/09 CD4 127 (13%) VL 626,376 Started Truvada/Prezista/Norvir
07/15/09 CD4 849 (20%) VL 379
09/09/09 CD4 594 (21%) VL 68
01/28/10 CD4 706 (23%) VL 127
05/27/10 CD4 655 (22%) VL 322
07/29/10 CD4 750 (22%) VL 220
10/22/10 CD4 669 (23%) VL 65
12/27/10 CD4 720 (24%) VL 270
03/08/11 CD4 644 (23%) VL 631
07/27/11 CD4 694 (23%) VL <20
03/09/12 CD4 601 (20%) VL UND
11/07/12 CD4 693 (23%) VL UND
04/17/13 CD4 559 (23%) VL UND
11/07/13 CD4 846 (24%) VL UND
03/28/14 CD4 869 (24%) VL UND

Offline tednlou2

  • Member
  • Posts: 5,730
Re: IRIS - MAC
« Reply #5 on: April 28, 2012, 12:13:15 am »
That is good news that lymphoma was ruled out.  I wish you all the best with the MAC and IRIS.     
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Offline ATLpozbrother

  • Member
  • Posts: 26
  • I'm Sick and tired of being Sick and tired.
Re: IRIS - MAC
« Reply #6 on: April 28, 2012, 02:55:52 pm »
@ Nixsmail...thanks so much for sharing, I think this is exactly what i was looking for, and it appears i have IRIS TB/MAC not so sure that the stage of active/inactive, the swollen lymph nodes were the start of it all, had the largest one surgically removed, which is a great improvement to my image/self esteem, the second one was reduced in size and the med will decrease them.  Thanks so much for providing and sharing your situation...appreciate you. :-*
Logged
10/11 cd4 23, VL 125000-hospitalized PCP
1/12 started Gilead vaccine trial-The Quad Pill
1/12 cd4 40,   2% VL 445,000
2/12 cd4 153, 6% VL 43
3/12 cd4 248, 8%  VL 1023
4/12 cd4 215          VL 99
4/22 cd4 208, 8%  VL undetectable.
5/12 cd4 168, 9%  VL undetectable
9/12 cd4 176, 10% VL undetectable

Offline HereIAm

  • Member
  • Posts: 68
Re: IRIS - MAC
« Reply #7 on: April 28, 2012, 03:07:54 pm »
Greetings PozBrother!

I have noticed the numbers in your signature block. Those are very nice improvements. While I am not your doctor or a doctor of medicine it does look like you have had IRIS.  While I did not go through this, I know a number of people who did. It does eventually get quite a bit better.

It is also great news that they have ruled out lymphoma!

Keep your chin up, my friend. And, you're welcome to private message me here if you need somebody to talk to. Keep in mind I'm not a therapist or a moderator here but just an everyday person who has HIV.
Logged
Tested Positive 10 Sept 2008.
24 Sept 2008:  CD 4: 23;   1%;  VL: 770,709
1st Oct 2008:  Started Atripla
4 Dec 2008:  CD 4: 145; 8%, VL: 209
1 March 2009:  CD 4: 91; 8%, VL: 49 (undet)
1 June 2009:  CD 4: 164; 11%, VL: 61
8 July 2011:  CD 4: 286; 17%, VL Undet
28 Oct 2011: CD 4: 346; 21%, VL Undet
2 Mar 2012: CD 4: 316; 20%, VL 6800 (probably an error)
12 Apr 2012: CD 4: 333; 21%, VL Undet

Offline BrooklynGuy

  • Member
  • Posts: 49
  • Tomorrow is not a promise, it's a gift.
Re: IRIS - MAC
« Reply #8 on: May 09, 2012, 08:52:42 am »
PozBrother:

I was diagnosed in June of 2005 and went throuth the EXACT same thing you have gone through - except my lymph node swelling was on my right side under my jaw bone and on the side of my neck.  It was embarassing and frightening.  I had the same needle aspirations and ENT exams and eventually, mine actualy burst.  I now have scars under my chin and on the side of my neck but in the grand scheme of things, I'm none the worse for the wear.  I too was put on the same TB/MAC regimine except they too suspected that I had TB and in New York State even the suspicion of TB puts you right into the hospital under isolation.  In the end I did not have TB but the bad thing that came out of the powerful TB meds is that I have permenant neuropothy in my feet (a common side effect from what I was told).  Anyhow, glad you are OK and moving forward.
Logged
Infected:  Probably 1995
Diagnosed: June 2005
Baseline VL: 650,000
Baseline CD4: 30

Last Dr. Visit: 12/2013
VL: Undetectable
CD4: 700
Meds: Complera

Offline ATLpozbrother

  • Member
  • Posts: 26
  • I'm Sick and tired of being Sick and tired.
Re: IRIS - MAC
« Reply #9 on: May 19, 2012, 06:11:06 am »
@BrooklynGuy thanks so much for sharing. The confirmation test for MAC (AFB Smear) returned positive last week, based on the surgical removal process and its positive for MAC.  The AFB test takes up to 10 days to confirm MAC lab growth.  Hence, I am currently on MAC treatment and working with the ENT surgeon who has been providing excellent post op followup. I'm back to work after taking a week off, huge improvement in my neck, no longer swollen.  Infectious Disease doctor has been great and has me on a monthly report to his office to continue to monitor my meds and labs with a goal of increasing my T-cells.  It's been such a struggle since I was diagnosed in October 2011, but I'm a believer in a higher power and this too shall pass.  I've also started going back to the gym, taking it easy and trying not to over do it.  I'm hoping one day I can go one day without worrying about all this. Thanks so much for this site which provides me with so much shared knowledge.  This is the one site where I can log on and depart the site feeling like I am not alone in all this and my scenario is not so unique.  I'm getting better mentally day by day, accepting the facts of my diagnosis aint easy.  A peace of mind is what I seek. 
Logged
10/11 cd4 23, VL 125000-hospitalized PCP
1/12 started Gilead vaccine trial-The Quad Pill
1/12 cd4 40,   2% VL 445,000
2/12 cd4 153, 6% VL 43
3/12 cd4 248, 8%  VL 1023
4/12 cd4 215          VL 99
4/22 cd4 208, 8%  VL undetectable.
5/12 cd4 168, 9%  VL undetectable
9/12 cd4 176, 10% VL undetectable
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