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Author Topic: viramune & Combivir  (Read 2314 times)

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Offline mousey

  • Member
  • Posts: 22
viramune & Combivir
« on: June 17, 2008, 12:41:12 PM »
hi all,

Just like to share what my bf and myself have went through a torturous week
.
My bf just started his meds in the 2nd week and all of a sudden..he had a fever last sunday. It kept on and off repeatedly and basically popping fever pills to stop the fever. We suspect that it maybe his meds side effects.
Monday and Tuesday came worse for his condition. His fever kept bothering him, and can't work. Lips swollen and swollen glands appeared - It hurts when touched.

Last tuesday was so bad that he had to take urgent off from work. Lips become so painful that makes him unbearable. Rashes appeared on his hand and further to his neck and face. Fever was repeatedly so high that came wednesday - which is the day of his doctor appointment, the nurse told him to stop taking his meds and took his temperature - was a soaring 39 Degrees Celsius.

Doctor suspect is viramune he is taking causing the allergic and was asked to stop taking it. '
Combivir continues in his meds regime. The following days were even more terrible. I was basically off work and rushed to his home to see how is he doing and cried everyday. Worried and terribly sad to see his condition. He is unable to speak. His mouth was filled with ulcers and lips were bleeding. Fever subside but rashes came worse.  :-\

His doctor did prescribed him with anti-bacterial mouth wash, pain-killers to improve the condition.
I can tell you that at that time, we are at ultimate dead-end. Not only does feel like dying, I feel so dead too.
He is unable to drink nor eat. Just slip in some liquid into his mouth hurts him so much that he has to use a straw. This continues till Friday where he is able to drink some fresh milk without a straw.

We are so desperate for an answer to the severe condition that we went online to find that he may diagnosed with Stevens-Johnson Syndrome - a deadly skin condition.  :'(

I pray hard to god to let him recover. If condition did not improve, he may have to admit to hospital - which is terrible cause none of his family knows about his condition. We kept telling tall stories to his mum that he gotta Food Poisoning!  :-X 

There came during the weekends which shows some recovering. His lips doesn't swell and he feels much better. His rashes colors went from bright red to brownish-black (which I believe is recovery stage) - at his worst condition, his rashes went all over his body, legs, body, ears, face, soles , etc...

When his lips began to improve (de-swell), he also managed to drink more liquid and his throat is not as painful as before. But still unable to eat. He is so weak at that time. Just yesterday, I accompanied him to see the doctor (not his usual doctor, as he is on leave that day.) - it appeared that my bf is better based on what he sees, and just reminded him to come for an appointment on wednesday. - which I become fearful of next medz he is gonna take. Just wondering whether it will give some severe side effects too? (touch wood)
 
Neverthless, I would say that those who are experiencing side effects at this moment, please please hang in there. I will pray to god to those who are suffering for better health and well-being.

My bf and myself had went through every second of painful moments during the last few days and had went through together. And mindful that we are a pair of Mixed-HIV-Status Relationship living in a conservative asia country, which makes it more difficult to overcome this deadly disease - HIV/AIDS.

Best wishes and good health to all.


:: Believe in a cure ::

Offline rondrond

  • Member
  • Posts: 1,712
Re: viramune & Combivir
« Reply #1 on: June 17, 2008, 01:35:02 PM »
Oh mousey,

It must have been a terrible time for both of you. I'm glad that he appears to be getting better.

It sounds pretty severe. I would have gone to the hospital. My Mom would have taken one look at what you described and known that it was not food poisoning.

How long has he been diagnosed? and what 'fever pills' was he popping? There are many drug interactions that a doctor can advise on.

Wishing your bf a speedy recovery, and take care of yourself too.

ronnie

"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline mousey

  • Member
  • Posts: 22
Re: viramune & Combivir
« Reply #2 on: June 17, 2008, 02:18:16 PM »
Hi rondrond,

Yes, the side effects he had experienced is definitedly severe.
Panadol are the fever pills he was taking. The fever he was having at that time was so unbearable that I tried to control him from taking too many at a day. (Limited to 8 tablets per day).
I believe that are no drug interactions (correct me if i'm wrong). As it appeared that his doctor didn't mentioned much about the pills he is popping to ease the fever.

Luckily his mum is kinda old (maybe can't see well), and believe us that it is food poisoning. His elder sister even commented that she hasn't such rashes before  :-X

Well, he also went to take some pain-killers for his ulcers which is the top killer for him.
He was diagnosed in late 2004 and we went to denial till few months back to get a testing. He is just on meds recently. His CD4 count was around 200+ which brought him to medication immediately.

Got the recent discouraged update from forum that kp-1461 seems not working. We felt so sad. KP 1461 has been what we have been waiting for (In hope of good news) this coming December. - which seems impossible for now.

I pray for better medication and lesser severe side effects and wish that both of us can live up to 60 years and I will be a very happy old woman by then.
:: Believe in a cure ::

Offline rondrond

  • Member
  • Posts: 1,712
Re: viramune & Combivir
« Reply #3 on: June 17, 2008, 02:33:28 PM »
yep, that denial thing gets us every time.

It's a good thing he has you there to help him through this.

Take care
ronnie
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline mahalia

  • Member
  • Posts: 54
Re: viramune & Combivir
« Reply #4 on: July 02, 2008, 03:54:00 AM »
hey mousey, that sounds to me like its a reaction to viramune, i suspect ur boyfriend has what is called Steven Johnson's Syndrome. I also started on the same combination i.e. viramune & combivir. i reacted so badly, its not funny. i looked so horrible. he should be put under medical observation becoz it can be fatal and stop taking that treatment, A.S.A.P. just google it up, go see a specialist and tell them what ur suspicion is. Its a very rare reaction to viramune, usually pple get rashes or somethng but not SJS. with tym he'll be ok. the only thing that he'll be left with its marks that take quite a while to vanish, i use bio-oil. its helps jst a little. But i survived it, God was just awesome...i got proper medical attention,which i believe is what ur boyfriend needs.

My mother did not know bout ma status until i got this and ii just had to tell her. there is no point, they need to know what they are dealing with, so...

With food its going to take a while to start eating solids, just ensure he takes liquids; custard was the only thing i could take, but try also juices, soup, mash him some bananas, u knw, coz he needs to eat. and then they will need to switch(regimen).

I hope i've made sense

Offline YaKaMein

  • Member
  • Posts: 368
Re: viramune & Combivir
« Reply #5 on: July 02, 2008, 04:16:39 AM »
Welcome Mousey and Mahalia

Just wanted to pipe in that everytime one has

severe reactions with skin rashes, blistering, hives, swelling, difficulty breathing, with or without pains, fever, etc

SEEK IMMEDIATELY MEDICAL ATTENTION - PLEASE

09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline mousey

  • Member
  • Posts: 22
Re: viramune & Combivir
« Reply #6 on: July 02, 2008, 09:05:58 AM »
hi mahalia,

He has recovered however the skin specialist mentioned that it will take up to 1 year to fully recover from the rash scars. At the moment, the doctor only prescribed a moisturizing cream! We went to buy whitening cream too, just to ease the scars left.

His doctor told us today he nearly has SJS. But it was horrible at that time.
Can I ask what is bio-oil? How is your scars recovering status?

It took him about a week later to eat solid food. It was quite fast but lost a lot of weight due to his "no food at all" week..... He was very hungry soon his ulcers in his mouth recovered..I can't imagine the week I saw him with swollen, red bloody lips  :-[

Meanwhile, have a healthy and positive mind many many years ahead.

Cheers.
:: Believe in a cure ::

Offline mahalia

  • Member
  • Posts: 54
Re: viramune & Combivir
« Reply #7 on: July 03, 2008, 03:41:15 AM »
Hey mousey, thats great news. yeah i understand the scars take quite a whle to ease off, bio-oil is a tissue oil, so maybe if u dont have that label just look for some good tissue oil. It does help. I'll be starting facials this weekend, hope it'll ease off the scars,(just cant help bein vain, hahaha!)its a little frustrating when u used to have a good skin and no all these!

I envy him, it took just a week for him to get back to solids!nice!ma dear afta that long witout food, u'll eat anything and everything thats put in front of you. I used to complain to ma boyfriend bout how much i just miss food, u knw...lol.

So have they switched him?

Offline mousey

  • Member
  • Posts: 22
Re: viramune & Combivir
« Reply #8 on: July 03, 2008, 12:19:19 PM »
hi mahalia  ;)

yeah, definitedly relieved to see him back to normal pretty fast. But then again, we are so depressed at that time, u know what i mean...

well, his doc just switched him and today is his first day of Sustiva & Combivir. We are keeping our fingers crossed this time and pray really hard there will be a little or no side effects this time  :-X

Oh yeah, going for facials!! haha...cool... hope you'll have your beautiful complexion back soon! Keep from the sunlight and keep moisturized and remember to put on sunscreen !  :D

My bf lost quite a number of kilos even though he is on liquids for just a week. how about u? He is trying to eat alot more to gain back his normal weight. .. heehee
:: Believe in a cure ::

Offline YaKaMein

  • Member
  • Posts: 368
Re: viramune & Combivir
« Reply #9 on: July 03, 2008, 12:26:43 PM »
Glad to hear everyone is on the mend. Continued progress and feeling better. :)  -YaKa
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline mahalia

  • Member
  • Posts: 54
Re: viramune & Combivir
« Reply #10 on: July 08, 2008, 05:54:45 AM »
great news mousey, m still battling to regain ma weight back, i dont look sickly tho, just that those curves n ...aint as good anymore, hahaha!its just that its not so easy regaining weight. i think for it to be less frustratin one needs to focus on getin their health back not necessarily gaining weight ore say, but just the overall pic, u knw...

ddi ma facial this sat...happy, m goin to be doin a veg peel nxt month, its expensive tho, but m goin to do it either way. i'd rather skip on goin out, boyfy will take care of that, hahaha!!!

i doubt ur man wil have any more reactions after the switch, he should b ok, mayb just a little side effects of sustiva but nothing as terrible...so chil, its goin to be fyn...

 


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