Author Topic: Recovery from PCP (Read 14570 times)

Fondoo · « **on:** March 11, 2010, 09:43:32 pm »

Hi all,
I have recently had a bought with PCP. It came on a few weeks ago and got bad fast after a week at home I ended up in the hospital for 6 days(I was released Saturday). Currently I am feeling much better but my energy level is still real low and I noticed a slight fever is back.
I am looking for some personnel experiences about recovery time since I have no idea what to expect. My work as a auto detailer is very physically demanding so it's pretty scary not being able to make a living at the moment.
Just FYI my t-cells last count were 17 and vl500k I will be starting Atripla on Monday so wish me luck

Inchlingblue · « **Reply #1 on:** March 11, 2010, 09:56:14 pm »

Please don't take this the wrong way, I've read through your posts and you seem like a very nice guy but I have to ask: Wasn't the PCP avoidable if you had started meds after getting MAC?

blackwingbear · « **Reply #2 on:** March 11, 2010, 10:17:06 pm »

Quote from: Fondoo on March 11, 2010, 09:43:32 pm

Hi all,
I have recently had a bought with PCP. It came on a few weeks ago and got bad fast after a week at home I ended up in the hospital for 6 days(I was released Saturday). Currently I am feeling much better but my energy level is still real low and I noticed a slight fever is back.
I am looking for some personnel experiences about recovery time since I have no idea what to expect. My work as a auto detailer is very physically demanding so it's pretty scary not being able to make a living at the moment.
Just FYI my t-cells last count were 17 and vl500k I will be starting Atripla on Monday so wish me luck

I had PCP and then went on Atripla - and it made a world of difference! Expect to be feeling "under the weather" for a bit... but that will turn-around quickly if your system reacts to the Atripla similarly to mine. They will probably also put you on daily Bactrim and a weekly dose of Zithromax. I recommend drinking "Boot" or similar nutrition-drink for awhile to bring your system back to regular. Keep us posted,huh?

Fondoo · « **Reply #3 on:** March 11, 2010, 10:30:37 pm »

Quote from: Inchlingblue on March 11, 2010, 09:56:14 pm

Please don't take this the wrong way, I've read through your posts and you seem like a very nice guy but I have to ask: Wasn't the PCP avoidable if you had started meds after getting MAC?

That may very well be true. All I can say is I can be very stubborn once I make up my mind about something. Since I am hetro I have not been exposed to the great losses of the gay community so have not seen the horrors for myself. I had become convinced that the drugs were too toxic and I had a chance for health and longevity using holistic healing approaches. It is now painfully obvious I was mistaken. I have my daughter for the weekend so I have decided to hold off on the Atripla till Monday but I am ready and committed. I am pretty happy to hear how the drugs have improved since I was last on them. I figure if I have the constitution to survive the old therapies I should be able to thrive on the new one

Inchlingblue · « **Reply #4 on:** March 11, 2010, 10:44:06 pm »

That sounds great. Of course Atripla is the one combo (of the newer meds) most likely to give you some side effects so don't let that turn you off in case it happens.

I'm on Isentress/Truvada and am not experiencing any side effects to speak of.

leatherman · « **Reply #5 on:** March 11, 2010, 10:57:36 pm »

ouch! sorry to hear about that PCP; but glad you're still alive and kicking.

That's another difference from the "old days", not as many people die from PCP, as they did in the 80s and 90s. and the meds afterwards are more likely to help you get pretty recovered quickly

I had PCP in 96 and then went onto Sustiva mono-therapy

, so I can't tell you anything about how recovery goes today; but I can wish you a Speedy, Good Recovery!

I'm glad to hear too that you are going onto meds.

Just because you survived the PCP, without being on any meds yet, the HIV is still destroying your immune system and you're still in the danger zone (like that MAC and PCP didn't already tell you that you were in the bad zone.

)

Best Wishes and Feel Lots Better Soon!! (and get on those meds ASAP!)

PS

most likely to give you some side effects so don't let that turn you off in case it happens.
just think of it this way, you might as well deal with (and get through

) the atripla side effects NOW, while you're already feeling under the weather

Miss Philicia · « **Reply #6 on:** March 11, 2010, 11:08:38 pm »

Mikie, if you were on sustiva monotherapy when it was FDA approved in 1998, instead of a full HAART regimen, your doctor at the time must have had a degree from a Cracker Jack box.

ps: best of luck Fondoo

leatherman · « **Reply #7 on:** March 11, 2010, 11:36:44 pm »

Quote from: Miss Philicia on March 11, 2010, 11:08:38 pm

Mikie, if you were on sustiva monotherapy when it was FDA approved in 1998, instead of a full HAART regimen, your doctor at the time must have had a degree from a Cracker Jack box.

I had a lot of resistance issues going on, and didn't really have a lot of options. At least three times, I've been stuck on suboptimal treatment because there wasn't anything else, due to side effects or mutation problems. But when I developed resistance to Sustiva too, I wasn't so upset.

I was on that stuff for 9 months and never got past the barfing or mental issues. (the mental issues made me give up driving and my job; while the that barfing is why my teeth were nearly all demolished/gone in a year's time.) I also doubt my doctor's aptitude at that time too; but he was the only ID doc in town, so what are you going to do sometimes.

He was quite a homophobe, tried of all the gay guys dying on him in the hospital, and quickly becoming a raving alcoholic, soon to lose all hospital privileges in the city and to be arrested 3 times for drunk driving. He was, as a burned out health care worker, another "causality" of the aids epidemic.

I sure can understand why you, Fondoo, quit the meds back in the day. I kept plugging away at taking something, even sub-optimal treatment, cause I had seen the deaths of my friends and my first partner. But I was also well-read about the meds and knew that better meds were on the way, if I could only hold out long enough. I'm not much of a gambler at all; but new meds were in the pipeline then, so it wasn't a bad bet - and obviously it was the right bet for me as I'm here now, and healthier than I've been in a decade.

mikie
(who really, really hates that the "preview" button isn't working. Argh!
and who recently started his 15th hiv med but is down from a high of 32 to 4 piills a day. WooHoo!)

Assurbanipal · « **Reply #8 on:** March 12, 2010, 01:08:35 pm »

Fondoo

First things first -- hope your doctor still has you on Bactrim or Dapsone? With your tcell count you need to be on something to make sure PCP doesn't come back.

As far as how long recovery takes...

I talked to a a lot of people who had pneumonia -- it is almost like a community -- most of them had regular pneumonia and even THEY say it feels like it takes forever. And it is really important to get enormous amounts of sleep at first.

That said, HOW long it takes probably depends on how sick you got. I was sick for 2-3 months and even went on oxygen support before I went to the hospital. Also I was in longer (10 days mainly in intensive care). So it might have taken me a lot longer to recover than the usual. But, for what it is worth, here's my personal experience:

1 week out of the hospital -- started HAART
several weeks out -- off the oxygen support
5 weeks -- started driving again (dizziness)
6 weeks -- back to work part time (desk job)
10 weeks -- work full time, dizziness gone, stopped falling so much
6-8 months -- strangers on the street stopped asking me if I needed to sit down or help carrying things.
1 year -- co-workers and people who actually had met me before stopped asking if I needed to take a break

So, for me, it was long. But I'm pretty much entirely over it now -- the doc told me last year I could try to train for a marathon if I really wanted to....

Wish you a speedier recovery. But for now, get LOTS of sleep.

A

Fondoo · « **Reply #9 on:** March 12, 2010, 06:22:56 pm »

Thanks for the input and good wishes guys I sure do appreciate it. I decided to start the atripla last night and I have a nice side effect all ready, I am the radish man! My skin is very red and sensitive but on the upside my PCP burden feels lighter today so it may be true that protease may have an anti-fungle effect that can really help with PCP recovery.

leatherman · « **Reply #10 on:** March 12, 2010, 06:29:18 pm »

Quote from: Fondoo on March 12, 2010, 06:22:56 pm

I am the radish man!

Hang on!

You know it may take a bit of time to adjust to these chemical levels in your body, not to mention the change in viral load making a difference!

Just keep in touch with the doctor if the side effects intensify, prolong, etc.

Moffie65 · « **Reply #11 on:** March 12, 2010, 06:56:34 pm »

Fondoo,

I've had it twice, and all I can say is at this point your job is secondary. You MUST take the appropriate amount of time to recover, and this can take some months. You should probably be able to return to work in about two or three weeks, but you MUST take care and not overdo, as this can put you right back in the hospital.

I can appreciate the difficulty this places on you, being that you work with cars, but let me tell you, you have to rest and recouperate. Also, make sure that you wash all your raw food, and drink only distilled or purified water. You can ask your case manager for a water filter, but it may not be covered anymore.

Be very protective of letting germs into your body, as your immune system is still very damaged. If the redness continues, you also might be allergic to Bactrim, and they can de-sensitise you in the hospital if this is true.

Fondoo · « **Reply #12 on:** March 13, 2010, 04:38:31 pm »

Thanks for the advice guys. I wish I could take more time off but I just do not have the financial means to do it. The redness is definitely from the Atripla I had been handling the bactuim well but an hour after taking Atripla my skin issues started.

Hellraiser · « **Reply #13 on:** March 13, 2010, 04:45:28 pm »

With your low CD4 count you should be on Bactrim/Dapsone/Mepron (one of those) and Azithromycin/Zithromax. Did your doctor not give you a prescription for those as well? When is your next blood draw? If you've never taken meds before your viral load should drop fairly quickly. Anyway good luck with everything and I hope you recover quickly.

blackwingbear · « **Reply #14 on:** March 13, 2010, 06:28:21 pm »

Quote from: Hellraiser on March 13, 2010, 04:45:28 pm

With your low CD4 count you should be on Bactrim/Dapsone/Mepron (one of those) and Azithromycin/Zithromax. Did your doctor not give you a prescription for those as well? When is your next blood draw? If you've never taken meds before your viral load should drop fairly quickly. Anyway good luck with everything and I hope you recover quickly.

I THINK they do have him on Bactrim....

Hellraiser · « **Reply #15 on:** March 14, 2010, 07:38:05 am »

Hmmm if he IS on Bactrim I'm going to bet that his adverse reaction in another thread is to the Bactrim and not to the Atripla. A lot of people are allergic to Bactrim (me being one of them). Actually his side effects sound more in line with Sulfa drug allergies than a side of Atripla.

Ann · « **Reply #16 on:** March 14, 2010, 11:25:09 am »

Quote from: Fondoo on March 13, 2010, 04:38:31 pm

Thanks for the advice guys. I wish I could take more time off but I just do not have the financial means to do it. The redness is definitely from the Atripla I had been handling the bactuim well but an hour after taking Atripla my skin issues started.

The rash sometimes associated with the drugs in Atripla doesn't normally happen until around day 10-14. It takes time for the meds to build up in your system and start causing problems.

I agree with the others who think your problem is more likely the bactrim - which you've likely been taking longer and it HAS had time to start causing problems. It sounds like an allergic reaction to sulpha to me too. The fact that it started an hour after you took Atripla is most likely just a coincidence. An hour is too quick to have this kind of reaction.

Please get yourself to an ER if you continue to feel unwell. Don't just stop your Atripla and hope for the best - do it the right way.

Ann

GNYC09 · « **Reply #17 on:** March 14, 2010, 11:32:26 pm »

I'm sorry to hear about your case of PCP. I was in the hospital for 2 weeks with it + 2 weeks at home on an oxygen tank (I weaned myself off gradually). I started Atripla once I got home. By week 5 I was back at work but it was really difficult. I was light-headed and tired for about 2 more weeks. So, in a nutshell, it took me a few months. I understand you are eager to get back to work but as the other posters have said, you really must do what it takes to get your help back. And do those breathing exercises your doctor shows you! Good luck!!

Fondoo · « **Reply #18 on:** March 17, 2010, 11:35:24 pm »

Hi all,
My recovery from PCP seems to be going very well. Especially compared to some of your stories, man I got lucky this time. My fever has not come back and best of all my energy level has greatly improved. I am still on bacterium 3 times per day. Some of you have mentioned my skin redness sounds like a reaction to bacterium but the inconsistency in that is I had been on bacterium in the past with no trouble and had already been on it for two weeks with no allergic response then took the Atripla and bamo! Also my skin is slowly recovering since stopping Atripla and still taking bacterium.
Thanks again for the advice and stories
Tracy

Fondoo · « **Reply #19 on:** March 17, 2010, 11:44:32 pm »

quote author=Hellraiser link=topic=31692.msg388397#msg388397 date=1268516728]
With your low CD4 count you should be on Bactrim/Dapsone/Mepron (one of those) and Azithromycin/Zithromax. Did your doctor not give you a prescription for those as well? When is your next blood draw? If you've never taken meds before your viral load should drop fairly quickly. Anyway good luck with everything and I hope you recover quickly.
[/quote]

My doc plans on me being on the bactrim/zithromax till the t-cells come up but has not started me on the zithromax yet I guessed he was waiting till I finished me high dose bactrim regiment.
Actually I was on the drugs 10yrs the same combo (after azt mano) worked with no resistant issues. There was considerable other side effects building up so I took a break. Obviously to long a break but oh well whats done is done. Not sure when next draw is.
Thanks again for the support you all have really helped

blackwingbear · « **Reply #20 on:** March 17, 2010, 11:45:08 pm »

Quote from: Fondoo on March 17, 2010, 11:35:24 pm

Hi all,
My recovery from PCP seems to be going very well. Especially compared to some of your stories, man I got lucky this time. My fever has not come back and best of all my energy level has greatly improved.

Wonderful to hear!

leatherman · « **Reply #21 on:** March 17, 2010, 11:45:46 pm »

Quote from: Fondoo on March 17, 2010, 11:35:24 pm

My recovery from PCP seems to be going very well.
I am still on bacterium 3 times per day.

Also my skin is slowly recovering since stopping Atripla and still taking bacterium.

You'll probably stay on a dose of bactrim until your cd4s are above 200 (I was on it for 10 yrs cause I would have taken anything to not be in the hospital with PCP again LOL I stopped it when my counts were finally trending 250 or over. Others too in the forums have be on it for as long or longer)

So if you're not taking Atripla, does that mean you spoken with your doc and changed to something else?

But I am glad to hear that you're on the mend. Here's hoping your recovery keeps moving forward!

Fondoo · « **Reply #22 on:** March 17, 2010, 11:55:34 pm »

["So if you're not taking Atripla, does that mean you spoken with your doc and changed to something else?"

My doc is out of reach and on the big island quality HIV care can be hard to come by. I know I am taking a chance with resistant issues and respect the advice to not stopping cold but my reaction was just too intense and without doctor support I felt I had to stop or risk hurting myself. I doubt it would have worked even without the skin issues and rapid heart rate because the anxiety and darkness of mood was very bad in and of itself and not something I would put up with. I would not have stopped cold if it was just mental though. Oh well lesson to self never start toxic drugs when your doc is out of town

Tracy

leatherman · « **Reply #23 on:** March 17, 2010, 11:59:35 pm »

I was just wondering. Sometimes you do what you have to do and make a "quality of life" choice. (been there done that myself back in the 90s)

just make sure to get in touch with your doc and back onto some meds soon.

I'd hate to see you get sick all over again by letting the VL climb back up - cause I bet your cd4 haven't gone up near enough yet.

Inchlingblue · « **Reply #24 on:** March 18, 2010, 12:28:17 am »

Considering you've had anxiety and depression in the past, Atripla should not have been the first choice for you but so many HIV doctors just go the easy way out and think everyone should start on Atripla.

Fondoo · « **Reply #25 on:** March 24, 2010, 11:02:19 pm »

Quote from: leatherman on March 17, 2010, 11:59:35 pm

just make sure to get in touch with your doc and back onto some meds soon.

I agree bro, will see my doc on Monday and will try a different combo next week.
On the up side my PCP recovery is great I am back to work and have been able to restart my yoga practice yay! Still having some anxiety issues and sleeplessness but I'm dealing. I sure do miss my ST.Johns Wart supplement (not recommended with ARV's) that and my yoga practice seemed to my magic bullet to years of mood trouble.
Namaste
Tracy

leatherman · « **Reply #26 on:** March 24, 2010, 11:21:10 pm »

Quote from: Fondoo on March 24, 2010, 11:02:19 pm

I agree bro, will see my doc on Monday and will try a different combo next week.
On the up side my PCP recovery is great I am back to work and have been able to restart my yoga practice yay!

I'm glad to hear that a trip to the doc is on the schedule. With low tcells and high VL, you need something to fight back the HIV or it'll get ya! (untreated HIV is a killer you know!)

I'm also glad to hear the recovery is going soooo well. when I had PCP I was down to 5 tcells and uber-sick. It took me months and months to recovery. heck it took a full 30 days before I had the strength to climb the staircase to get upstairs to my own bed!

I lived on the LR couch and the kitchen and bathroom seemed like they were freaking miles away!

good luck with the yoga, just don't overdo things too soon. Keep us informed on how it goes with the doc, and on your continued recovery!

best wishes for you Tracy!

RedBear · « **Reply #27 on:** April 22, 2010, 10:53:18 am »

Just wanted to reinforce what the others have said. The PCP recovery can be long and slow. I had a bout of it in 2008. I was in the hospital for 21 days, most of it on oxygen and in intensive care. At one point doc told me that if the meds they were giving me for the PCP didn't work, that he would either put me on the respirator or give me some good pain meds and send me home to let me pass. Fortunately the last meds worked and I am doing much better. I was scared out of my mind. But thanks to all the assistance for the forums and the great folks here, (thanks Leatherman), I got a handle on it and am dealing with it all. Took awhile to get back to some sense of normalcy. Still not quite there. I really pushed myself to get to a better place, which of course, knocked me down. So take it slow and easy. You may not get a handle on all of your limitations for awhile. I still have a great amount of fatigue. Definitely have some permanent lung damage as a result thus having my own limitations. Fortunately my cd4's shot up and VL went undetectable pretty quickly, within 3 months of starting the meds (Truvada and Isentress). Have had very little side effects, but it did take a good month to get past the nausea and spent a lot of time sleeping. So don't give up on the meds so quickly, you'll be amazed at how much better you'll feel with time. Good luck and hang in there.

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Author Topic: Recovery from PCP (Read 14570 times)