AIDS diagnosis

[maxisussex]

I have read this forum many times before I joined today and have read some interesting comments, however I have a few more questions.

I was diagnosed HIV + in April 11 with a cd4 count of 420, a few months later it increased to 705 and several months later ( march 13) it fell to 230 but I only got that result in Nov 13 because I never went back for my results, my most recent results showed I had a cd4 count of 22 and an opportunistic infection (esophageal candidiasis) and fungal infections on my face.


For 2 weeks I took only septrin before starting on ritonavir, darunivir and truvada all the while continuing septrin use.

I have now developed a cold and feel much weaker than I did but I feel the meds are partly to blame for that, now for the questions.

I think it is fair to say my life expectancy has been lowered a lot, I know some people live with AIDS for a long time but it seems more an exception rather than the rule.

I was told it could take several months for my immune system to recover, even on septrin am i still vulnerable?

Is it possible/likely I will develop no OI in that time?

Nothing I have suffered so far has been exceptionally bad, it is more the discomfort than the pain. 

[maxisussex]

Thank you in advance for any and all replies. Merry Xmas.

[mecch]

Hey welcome to the forum. I am so sorry you had to get such grim news and now are suffering a bit.
Is pretty hard for anyone to predict how your own immune system is going to go about rebuilding itself now that you are on HAART.
In my opinion, you can't fruitfully speculate on your life expectancy at this moment. In all likelihood if you stick to sound medical followup and treatment, you will rebuild. At that time, you can take stock of the actual situation - HIV as it applies to you, your body, your experience.
I think the elephant in the room is why you avoided picking up your results from March to November. So I'll ask if you are in a better space now, and more committed to really following doctors orders and sticking to it. 
Also - maybe I misunderstand, misinterpret, but there seems to be perhaps a distrust or suspicion of the medicine, with your comment:
I have now developed a cold and feel much weaker than I did but I feel the meds are partly to blame for that...
Hello, my friend, wake up, the medicine is fine and if you make medicine your friend, you will save your life.
Also, you can experience what is called IRIS - immune reconstitution inflammatory syndrome - meaning, while the viral loads are crashing down to undetectable from starting HAART, and your immune system regroups, starting from as low as you are, you can feel worse, but actually are getting better.

So I'll come out and ask straight - do you distrust or worry about the medicine? Think its poison, or whatnot?  I hope not, but if so, talk it out here, people will be kind and help you through that.

As for if you are going to have an OI coming up, I have no expertise whatsoever to say.

But thank your lucky stars that you are now on HAART and antibiotics. I hope that you continue to see your doctors regularly and that you find some support in this forum, too!

I hope you feel better from your cold by the New Year.  2014 is going to be much better for you, I am sure. That's my New Year's wish to you.

xx

[maxisussex]

I think the meds are great at what they do and for the 2 weeks I have been on them I have taken the same time daily as advised. However it feels slightly gaggy as they go down and after I started on them I got the squirts quite bad and have a rash that has (2nd time) started enveloping my body, was previously all over but now just my torso. I understand these things can be AIDS related not just the meds but in my mind it's making it harder to swallow the pills thinking they could be causing side effects.

I have an appointment in 5 days at the HIV clinic and ofc I'l mention all this to my specialist and see what it means but I certainly wont stop taking my meds I fully understand the importance of compliance. Thank you for your response and a merry xmas and happy new year for you too

[mecch]

Sounds like the rash is resolving already. Make sure you show this when you go in for the checkup.  Get pills for the "squirts" if it continues.

Anytime you think you have a side effect, just write it down on paper and bring a list to discuss with docs.  Eventually good docs will tick down any possible side effects and find solutions. Nothing is instant, however.
 
Why did you put you head in the sand from March to November?

[maxisussex]

Tbh it was apathy, I had only been infected for just over a year. Thinking a little to positive (no pun intended) I thought I had time, I can say with a degree of certainty I would have gone early in the new year.

Unfortunately I'm a rapid progresser and time was much more limited than I had known.

If I had known anything about progression rates it would have scared me into making the effort much sooner but thinking AIDS was years ahead, I didn't realise the urgency of going back to the clinic. Seems so silly in hindsight but I felt great for the first 1 and 9-10 months post infection it was never really on my mind.

I would have those moments where I would think "dammit i really need to make an appointment" but I'd just forget. By the time i asked for a new appointment face to face at the clinic, I was seen the very same day by 2 doctors and started septrin immediately

[maxisussex]

HIV diagnosis was 2012 not 2011, I don't know why I keep saying 2011 :S

[mecch]

Ok well now you know, apathy doesn't pan out for us HIV+ folks. 
I was a "rapid progresser" too - I was on meds within a few months and in hindsight should have been within a month. Live and learn.
It's a pity your clinic didn't call you!!!
Which brings up another good point.  Each of us is the primary agent in our health. If we are lucky, we can have support from friends, family, lover, whomever. Even luckier still, once someone is in regular medical followup, the doc CAN, sometimes, be someone who really does look out and be proactive about things. But everyone can't count on that.
If you feel like you might have too much apathy about your health and future, make sure you get some support. Here, in the forum. Locally, through an ASO.  And never ever ever disappear from the medical system.  Find providers you feel comfortable with and develop a decent exchange with them.  Bring your concerns, and listen closely to all the expert advice you get. 
The squeaky wheel gets the grease...

[mecch]

I would say you will probably be very closely monitored in the following months.
When you get out of the risk zone, you'll probably go down to 3-4 consultations a year, and then when everything is stable, down to 2 consultations a year. Thats for the HIV. And that's forever.  Meanwhile, you'll need to figure out a relationship with a GP, as well. So you can see someone when you have the flu, or whatever. 
Really, I can't stress this enough. From December 25th 2013 until forever, you must promise to NEVER disappear from medical radar, so to speak.  Eventually you'll see, all the experts will patch you up quite well, indeed.  Don't fret too much. Be kind to yourself.  You working? Have enough time to rest?

[Ann]

Hi Max, welcome to the forums.

I'm on the same combo as you are and while the first couple weeks can be difficult regarding the squirts, it will calm down. I had the same problem for the first ten days/two weeks but it soon settled down. It's the Norvir (the white pill) and it takes a little while for your body to adjust.

The rash will settle down too - you should have contacted your doctor so you could have gotten an antihistamine to help with the itching. Don't be afraid to contact your clinic over things like this - very likely you'd be handed over (on the phone) to an hiv nurse specialist and he or she can help.

I'm also kinda-sorta in the UK - on an island in the middle of the Irish Sea I call The Rock - and I go to a clinic in Liverpool. Hiv care is really good in the UK, so take advantage of it and ring them when you have problems.

You haven't necessarily impacted negatively on your lifespan. We have Long Term Survivors (LTS) on this forum, some of whom have had hiv for over 30 years. Most of them have been much sicker than you've been and they're still here and enjoying life. You shouldn't expect the worst, particularly now you're getting the treatment you need.

Keep taking your meds (btw, you should be taking your combo with some food - a snack will do - and that may help with the gaggy feeling) and you should be feeling better in the new year. Hang in there, ok?

Ann

[maxisussex]

Thanks guys ^^

[newt]

Hello Max, sorry to hear about the rapid dive of your CD4 count.

Judgements of life expectancy cannot be accurately made on CD4 count at time of starting treatment, they can be made after 5 years on treatment when they seem to more or less equalise regardless of CD4 count.

Septrin is a tough but effective drug and will prevent many serious OIs, including PCP pneumonia, and needs to be taken until your CD4 count is over 200. If Septrin gives you grief (the side effects like rash, headache you desribe are common on Spetrin) there are alternatives.

Also, like Ann says, the side effects from the HIV meds tend to settle. With your combo food helps, but not too fatty. And loperimide (Imodium), stops the quits, I personally would have no hesitation if it makes daily life better in the short term. The cheapo generic one is as good as the brand name, and clinic might give you some too.

I guess they have you on something for the candida too. That's a shed load of treatment, so gonna be rough for a while perhaps.

Big hug

- matt xx