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Author Topic: Partner newly diagnosed with HIV and PCP  (Read 36471 times)

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Offline Jim Allen

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Re: Partner newly diagnosed with HIV and PCP
« Reply #50 on: July 27, 2017, 02:15:55 pm »
The important part is he is viral suppressed, his body can focus on healing and CD4's don't tell the whole story.

How is he feeling? Better and more active?
How are you coping with the stress, do you have support and time out for yourself? I guess not much over the last few months but if he is doing okay I think there is no harm in taking some time for yourself if you can.

Jim
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Offline Ptrk3

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Re: Partner newly diagnosed with HIV and PCP
« Reply #51 on: July 27, 2017, 03:18:40 pm »
As Jim wrote, the more important thing now is that he maintains an "undetectable" viral load.  His CD4's will recover in time and they are moving in the right direction.

It can take a year or even longer for CD4's to stabilize above 200, especially when the nadir is so low and if the infection has been there for a long time.  It seems to me that he is actually making good progress on his CD4 reconstitution.

So don't get caught up in the weeds or his recovery.  He is doing fine.

Take care of yourself, too.
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Offline Tonny2

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Re: Partner newly diagnosed with HIV and PCP
« Reply #52 on: July 30, 2017, 03:52:39 pm »


       ojo         Hello dear Lee, I think it's time for you to take a vacation, your partner is doing fine, according to the numbers you are sharing...his treatment is working and his "soldiers" are recovering, they 9cd4), not only were fighting hiv, but also they were beaten up by the chemo, so, don't feel bad, relax and take a break. If you knew how long it took me to become UD and for my "soldiers" (cd4) to get over 200, you will be sorprised...come on, go and take a break and relax, he is doing fine...best of luck    ojo

Offline Lee82

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Re: Partner newly diagnosed with HIV and PCP
« Reply #53 on: October 02, 2017, 04:32:58 pm »
Hello all.

We just came back from a wonderful 2 week holiday, and both feeling good.

He has his latest cd4 count in a couple of weeks and hoping we get over that 200 mark this time. Just a quick question, today they gave him the flu jab at his GP's office. Is this ok for someone whose CD4 count was last at 170?

Apart from that, the only issue is his KS. He probably has around 20 lesions on his body which he got upset about one night during the holiday. I'm hoping in time they will fade, but know this probably wont be the case. It's such a shame because in every other aspect his progress is amazing, yet we are reminded every day by the marks. I call them his battle scars. Emotionally i'm getting there, the whole last 12 months plays on my mind a lot. The support there for partners is really limited so after Christmas i'm thinking of getting involved with a charity. Thanks you lot. Xxx

Offline Ptrk3

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Re: Partner newly diagnosed with HIV and PCP
« Reply #54 on: October 02, 2017, 04:37:15 pm »
Yes, there should be no problem whatsoever for his having had a flu shot.  Flu shots are almost always made from inactive virus.  Rest assured, his healthcare provider would never have given him a flu shot if it put him at risk.

On the contrary, it was important that he got a flu shot.  It was the right thing to do.
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Offline Lee82

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Re: Partner newly diagnosed with HIV and PCP
« Reply #55 on: October 02, 2017, 04:54:55 pm »
Great thanks for the quick reply as ever.

Offline Ptrk3

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Re: Partner newly diagnosed with HIV and PCP
« Reply #56 on: October 02, 2017, 05:03:58 pm »
You're welcome.  Remember, too, to get a flu shot for yourself.

Also, you may wish to ask your partner's healthcare provider if your partner should also get a Pneumococcal Conjugate Vaccine (PCV13) shot:

https://www.cdc.gov/vaccines/hcp/vis/vis-statements/pcv13.html

https://www.poz.com/article/hiv-pneumococcal-vaccine-23049-3892
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Offline Tonny2

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Re: Partner newly diagnosed with HIV and PCP
« Reply #57 on: October 02, 2017, 08:58:53 pm »


      ojo        Hello Lee, I'm glad you two are doing great...as for the flu shot, I got it with a zweo cd4 during five years, so he will be ok...hugs and please keep  us posted   

Offline Lee82

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Re: Partner newly diagnosed with HIV and PCP
« Reply #58 on: October 26, 2017, 01:34:31 pm »
Hi all, well he just had his latest CD4, and again only went up slowly. This time from 170 to 184. Still undetectable.

Think i’ve finally realised now thats its going to be a long gradual process. This time last year he collapsed on me and was close to death, so to go from a CD4 of 10 to 184 in a year is pretty good going.

Kaposi Sarcoma is still present but doctor happy that all the lesions are still flat.

Onwards...

Offline Jim Allen

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Re: Partner newly diagnosed with HIV and PCP
« Reply #59 on: October 26, 2017, 02:05:53 pm »
Glad to hear he is doing okay.
10 to 184 is great, its progress in the right direction.

That said don't read too much into the CD4 count, I know its easier said that done, however the count does not equal a measurement of healthy.

Jim

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Offline CaveyUK

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Re: Partner newly diagnosed with HIV and PCP
« Reply #60 on: October 26, 2017, 05:57:17 pm »
He could very well be tipping over 200 if the CD4 test was done at a different time of the day. It's THAT variable, so don't obsess too much about it.

The only thing that matters is he stays undetectable. That allows the body to function normally without having to constantly fight HIV and also allows it to build up the CD4 cells over time. You can't do anything about the latter though, so purely focus on the UD status.

It sounds like you are doing this anyway, but try not to focus on the HIV as much as you can. Live your lives. Have fun. Before you know it time will fly and he will be sitting there with a count you are happy with, and with KS scars that will be all but gone.

Don't waste too much energy and time during life, worrying about something that no longer warrants worrying about. It will be good for the soul.

Anyway, delighted at the progress and do pop in occasionally to update us.
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Offline Tonny2

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Re: Partner newly diagnosed with HIV and PCP
« Reply #61 on: October 27, 2017, 11:22:11 am »

      ojo      hello lee, thanks for keeping us posted...i'm glad he is still UD, it means his treatment is working, now, his cd4 needs time to recover, and to tell you the truth, i think it is good his cd4s are increasing little by little, this way, he could avoid IRIS, because of his KS, so, you two, focus in "vivir la vida loca", and keep us posted...just a note, it took me from january 95 to february 2000, to get over 200 cd4s, i lived fuve years with no cd4, although i should admit. i lost some battles living with aids for that long, i'm legally blind due to cmv retinitis, but i'm still here sharing  my experiences with you all...best of luck...hugs for both of you                        ojo
« Last Edit: October 27, 2017, 11:26:48 am by Tonny2 »

Offline Lee82

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Re: Partner newly diagnosed with HIV and PCP
« Reply #62 on: January 25, 2018, 02:02:42 pm »
Hi all, hope you are all well and good.

So my partner had his most recent blood tests last week and his CD4 count has gone up from 184 to 202. Finally we are over the 200 barrier! Doctor says if his next count is still over 200 we can stop using the Bactrim and just take the 2 pills a day.

Unbeknown to me, he had been taking pics on his phone of the KS on his body at the start, middle and end of last year. And I’d forgotten exactly how bad it first was and how much better they have all got. Lots have disappeared completely, some stubborn ones remain.

Hoping things continue to get better and better.

Offline harleymc

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Re: Partner newly diagnosed with HIV and PCP
« Reply #63 on: January 27, 2018, 09:56:45 pm »
G'day Lee, so glad your partner is doing so well.  It also sounds like the stress you were feeling is greatly reduced.

Well your sweetheart well and truly has more cd4s than me now. With the KS lesions, my KS started reducing quite quickly but there was some scarring for about 2 years from the worse ones.

But even those scars will fade with time. The before, during and after shots for the KS would be fabulous to see in some sort of online gallery.

Offline Lee82

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Re: Partner newly diagnosed with HIV and PCP
« Reply #64 on: May 03, 2018, 11:15:02 am »
Hi all

Not such good news this time. His CD4 count has went down to 178 from 202. His viral load is still undetectable. In himself he is absolutely fine.

The doctor hasn’t continued his prescription for septrin as he said his CD4 % is still rising and his VL is undetectable, but if there’s one thing ive learnt from these forums it’s that if your CD4 is under 200 you should be on some prophylaxis to prevent any opportunistic infections??? Also the doctor doesn’t want to see him every 3 months anymore and now says every 6 months should be fine.

Am I worrying about nothing here, or should I be challenging the doctor?

Offline Ptrk3

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Re: Partner newly diagnosed with HIV and PCP
« Reply #65 on: May 03, 2018, 11:34:35 am »
Not to worry, CD4 blips occur and a CD4 number can change 100 points or so daily.
What's important is that your partner continue to adhere to his antiretroviral regimen and remain undetectable.

As to your question, recent protocols suggest that primary and secondary PCP prophylaxis can be withdrawn as long as the patient has been undetectable for a lengthy period (three to six months) and maintains CD4's above 100 (and at 14% or thereabout), so your partner's doctor is not off the mark. 

https://aidsinfo.nih.gov/guidelines/html/4/adult-and-adolescent-opportunistic-infection/321/pcp

Relevant language:

A combined analysis of 12 European cohorts16 and a case series66 found a low incidence of PCP in patients with CD4 counts between 100 and 200 cells/mm3, who were receiving ART and had HIV plasma viral loads <50 to 400 copies/mL, and who had stopped or never received PCP prophylaxis, suggesting that primary and secondary PCP prophylaxis can be safely discontinued in patients with CD4 counts between 100 to 200 cells/mm3 and HIV plasma RNA levels below limits of detection with commercial assays. Data on which to base specific recommendations are inadequate, but one approach would be to stop primary prophylaxis in patients with CD4 counts of 100 to 200 cells/mm3 if HIV plasma RNA levels remain below limits of detection for at least 3 to 6 months (BII). Similar observations have been made with regard to stopping primary prophylaxis for Toxoplasma encephalitis.67
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Offline Tonny2

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Re: Partner newly diagnosed with HIV and PCP
« Reply #66 on: May 03, 2018, 02:00:47 pm »


       ojo       hello dear lee...i wouldn't worry, your doctor is right, no need for septrim, he is UD, besides, if his % is raising, that means good news...i haven't read ptk reply, just if i sounded just like him...you two keep enkiying each other, he is doing great...best of luck and hugs                                                                           ojo

Offline CaveyUK

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Re: Partner newly diagnosed with HIV and PCP
« Reply #67 on: May 03, 2018, 03:28:36 pm »
Indeed, a fairly stable setting such as UD and being adherent to meds, is one of those occasions where CD4% comes into play as it gives the doctor a better idea of whether there is a worrying trend going on or not.

It doesn't sound like there is a worrying trend in this case. So try to relax. You can never control CD4's and they can be impacted by just about anything including, as has been said, the time of day.
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Offline Lee82

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Re: Partner newly diagnosed with HIV and PCP
« Reply #68 on: December 22, 2018, 10:40:33 am »
Hi all, just a quick update before the year end.

My partner continues to improve, his viral load remains undetectable and his cd4 count is around the 200 mark. It’s been 2 years since he nearly died so anyone reading this who is diagnosed late with single digit cd4 levels and PCP, recovery is possible.

Hope you all have a great Christmas and all the best for 2019!

Offline Jim Allen

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Re: Partner newly diagnosed with HIV and PCP
« Reply #69 on: December 23, 2018, 12:52:18 am »
Hiya

I'm sure people appreciate the update and, i'm glad to hear things are continuing to go well for your partner as he recovers.

Wishing you both all the best.

Jim
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Offline CaveyUK

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Re: Partner newly diagnosed with HIV and PCP
« Reply #70 on: January 08, 2019, 05:14:35 pm »
glad to hear things continue to go well :)
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Offline Lee82

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Re: Partner newly diagnosed with HIV and PCP
« Reply #71 on: June 27, 2019, 03:14:24 am »
Hey all, latest update is his CD4 levels jumped up to 272 so we are both really happy right now. This is the highest it’s been since his diagnosis of a CD4 of 10.

Offline Expat1

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Re: Partner newly diagnosed with HIV and PCP
« Reply #72 on: June 27, 2019, 10:58:58 pm »
Give them time and the meds work.  Glad about your partners new higher numbers.  Keep us posted.

Offline Ptrk3

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Re: Partner newly diagnosed with HIV and PCP
« Reply #73 on: June 27, 2019, 11:39:57 pm »
Great news, Lee82! 

Keep up the excellent progress.

Congratulations to you both.
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Offline Lee82

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Re: Partner newly diagnosed with HIV and PCP
« Reply #74 on: February 21, 2021, 06:11:35 pm »
Hello all, I hope everyone is keeping well and staying safe.

I felt it was important to put an update on here, as I remember scouring this forum back in 2016 when my partner was in intensive care, having been diagnosed with Aids, a cd4 count of 10 and covered in KS lesions. This is for anyone reading now whose partner is in a similar situation...

My partner has recovered. His CD4 count has been over 200 for 2 years now, he works full time, the lesions have gone, his breathing is fine. All is well. Going through something like that is something that stays with you for life. But thankfully we got through it just in the nick of time. If you know someone who has been diagnosed, support them but also remember to be good to yourself too. I promise once they are on the correct medication you will see an improvement.

 


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