Pancytopenia

[marvinthomas]

Hi all

Has anyone experienced Pancytopenia before. If so, how was it managed or resolved?
Pancytopenia is when all 3 blood cells are below normal reading.
I had this diagnosed by the hematologist.

I stopped my meds 3 years ago.
I have developed poor skin quality over the years.
My body feels like an oven - so hot

I developed prorugo nodularies
Itchy skin thighsm arms and mostly the back.
Scalp is always flakey and sore.
Disaster.

[Jim Allen]

Hiya,

Sorry to hear about the Pancytopenia; I presume this was recent. What has your healthcare provider said regarding treatment?

Also, to confirm, I understand your initial post on the forum correctly; you were diagnosed with HIV before 1996 and stopped treatment three years ago?

[J.R.E.]

Hello,

What you are experiencing is due to a severely compromised immune system, because you stopped your medications, over 3 years ago. Certainly your hematologist should have mentioned that to you.

When was the last time you had a viral load test done. and a check of CD4's

I would suggest an immediate visit with an HIV specialist, get those labs done, and get restarted on medication.

Ray 

[J.R.E.]

May I ask you why you stopped your HIV medications 3 years ago?


Ray

[marvinthomas]

When I was diagnosed, I had rash issues. THis never stopped when I started medication for over a year.
When I highlighted it to the doctor, all he seemed to be focused on was viral load. He made me feel as if I should be grateful and ignore the pain caused by skin rash which was getting worse, only getting me to be dependent steroid prednisolone.

I was also using the loo up to 8 times urinating full loads.
So I stopped. 

What I am experiencing?:

Rash on thighs, arms, center of back and flaky scalp. My eyebrows seem to be falling off. face feels is shrinking. Quality of my hair is poor. I am a black male.
Buttocks shrinking

Intense itching. very intense. I use heat to manage this pain.Hot water. I sit against the heater radiator to numb the nerves.
I also feel my insides: veins, atteries have internal rash. SOunds crazy but it feels like so.
Back of my neck is messed. large raised skin. this leathery. I do feel a sensation in my heart or lungs when I use heat to attack the itch. I get a euphoric feeling there.

my dermatologist said i have lichen exzemous something secondary to itching. Was told just to use creams.

Other than this, I seen to be ok. Almost feels like I will just drop.

[marvinthomas]

Diagnosed 2015.
On treatment from 2016 to end of 2017

Right now I seem to be shrinking because of this pancytopenia

Thank you all for your responses. Encouraged

[Jim Allen]

Hiya.

I have moved your post to "living with HIV" as the "Long-Term Survivors" is only for those members diagnosed before 1996.

How was your CD4 count at diagnosis, and have you recently had your VL and CD4 checked since being off treatment?

my dermatologist said i have lichen exzemous something secondary to itching. Was told just to use creams.

Lichen simplex chronicus?


Anyhow, I recommend you engage with your healthcare providers again and get back onto HIV treatment ASAP as issues will only worsen, or worse yet, sooner or later, you will have more serious issues. Pissing a few times a day and having ich will be the least of your concerns.

The focus, of this treatment, like your doctor had, is suppressing the viral load so your immune system can have a chance to heal over time and to stop HIV from doing both measured and unmeasured damage to your body.

I never had Lichen simplex chronicus, but persistent skin issues, fungal infections and rashes can be common at diagnosis with lower CD4, and it can take time. It took me about a year before things somewhat improved and perhaps another 2-3 years to go away.

[Jim Allen]

Hello,

What you are experiencing is due to a severely compromised immune system, because you stopped your medications, over 3 years ago. Certainly your hematologist should have mentioned that to you.

When was the last time you had a viral load test done. and a check of CD4's

fully agree.

[marvinthomas]

Results from biopsy: Lichen Simplex Chronicus and eczematous changes

[leatherman]

what HIV meds were you taking? some of those have been known to cause rashes. Did you ever discuss a med change with your doctor?

What was your VL and cd4 when you were diagnosed?  In the year or so you were taking meds did you ever reach undetectable? It's quite possible, if your numbers were bad, that a year of meds simply wasn't enough time to get your immune system back to full working order to deal with whatever was causing the rashes.

Also I would point out that simply being HIV+ increases a person's histamine level no matter what cd4 count. Having dealt with HIV for close to 40 yrs, I know a lot of HIV+ people who take an antihistamine daily to stop the itching. Personally, even half a Benadryl puts me to sleep, so I don't use it much and I do itch a lot.

When I highlighted it to the doctor, all he seemed to be focused on was viral load. He made me feel as if I should be grateful

well, if you're seeing an HIV specialist that really is their goal - focusing on the VL. If the VL is undetectable, the meds are working. When you're undetectable long enough, your immune system recovers and HIV is rarely a cause for any health issue. Then any health issue can often be tended to by a general practitioner.

As far as being grateful, since untreated HIV is a terminal illness, having meds to keep you alive is something worth being grateful for. I'm not saying you should just accept the rashes/itching. Maybe you need to see a second doctor - another HIV doctor, dermatologist, etc. to get another opinion on symptoms that aren't clearing up. Unfortunately, the time when we need to be the most proactive for our health is often the time when we're least likely to have the drive (because we're sick) to push for more or better health care.

Unfortunately, stopping meds isn't going to help you stay alive, get better, or solve your rash issues. So first you'll need to get back onto meds so you can get the HIV suppressed, so you can work with doctors on solving your issues.

[marvinthomas]

Thank you all.
Leatherman, thank you.
Jim Allen, thanks for your input too.

Life hey.

Why cant they just find a cure of this??

[J.R.E.]

Life hey.

Why cant they just find a cure of this??

It would be wonderful, wouldn't it,..... BUT,...Until then, you will need to be on medications, to keep your viral load undetectable.

I made bad choices, when I tested positive in 1985. In 1999, my tcell count was in the mid 900 range. I was not on any medication ever at this point. By September of 2003, my tcells were down to 16.

I will be very honest with you, I had a lot of issues going on, wasting, pneumonia, night sweats, chills, shingles, terrible mouth sores, constant fatigue, and sleeping more than 12 hours a day.

I lost in excess of 35 pounds on less than a year, and I looked like death. This is what advanced HIV and AIDS looks like, and that is what I dealt with.

When I started on medications, things improved dramatically, and quickly for me, but I was one very sick guy. Today I am doing very well at almost 71 years of age, and living with HIV since 1985.

 For much too long in my life, I felt invincible, and was in denial. Don't allow yourself to get into that state of mind, because the end result in not pretty.

So, get that viral load and cd4 labs done, and any others labs recommended. If they are bad, ( which they may very well be) you will need to be on antibiotics, to avoid any opportunistic infections. The HIV medications, are much more forgiving these days. One pill, once a day.

Take care of yourself, and keep us updated. Get yourself reconnected as soon as you can, to an infectious disease doctor.


Ray

[marvinthomas]

@J.R.E
Thanks
On 22/11/22 I will get lab results etc.
I will then start meds.
The doctor has recommended Biktarvy.

Am anxious about kidney damage
The doses are too high.

[Jim Allen]

Biktarvy contains the upgraded TDF formation TAF with smaller doses, lower drug levels, and kidney interaction. Although, even if you had the older TDF, millions of dosages are taken annually without issue.

Do you have a preexisting impaired renal function that is driving his concern? Have you spoken to the doctor about this concern? Did the labs they ran include kidney function to give reassurance?

https://www.poz.com/drug/biktarvy

[leatherman]

The doses are too high.

your information/thinking/opinion is out-of-date.

In 1992, doses may have been too high (AZT for one) but this is 30 yrs later and the amount of people who experience negative side-effects (excepting the generic short term ones that are not very common either) to quite a number of first line opinions is next to no one.

[J.R.E.]

Thanks
On 22/11/22 I will get lab results etc.
I will then start meds.
The doctor has recommended Biktarvy.

That's GREAT !! Don't hesitate to ask questions to your doctor, and let us know what the CD4 and viral load tests results are. As I mentioned earlier, if you have less than 200 tcells, you should probably be placed on Bactrim, Dapsone or an equivalent drug.

Take care of yourself---Ray

[J.R.E.]

Hi Marvin,...

Merry Christmas,... A few of us are wondering how you are.  How were those lab results, and did the doctor get you started on medication.

Hope all is well---Ray

[marvinthomas]

Nov 22
VL: 2000 000
CD4: 12
Dec 14:
VL 5000 000

Jan
VL: 1000
CD$ to be dome later: maybe 3-6months time.

Am on Biktavy since Nov 22, 2022.
Just swollen feet side effects
Feeling better

Hope you all ok.
Happy new year.

I intent to work on CD4 recovery to the best level possible.

[Grasshopper]

Happy New Year to you too 

I intent to work on CD4 recovery to the best level possible.

Please keep me posted on how you plan to achieve this 

[Jim Allen]

Glad to hear you are on treatment, feeling better and that the viral load has started to drop quickly. Once suppressed, HIV can't do unchallenged damage, and your immune system can start to "heal" or "recover" from trying to deal with HIV.

Regarding the CD4 count as its below 200, did the doctor give you any antibiotics to prevent OIs? If not, you may want to check with them. (Trimethoprim/sulfamethoxazole) https://www.poz.com/basics/hiv-basics/pneumocystis-pneumonia-pcp

I intent to work on CD4 recovery to the best level possible.

Next to taking the meds to suppress HIV and stop it from causing damage, there isn't much you can do about the CD4s except give your immune system time. Also, the CD4 count, once above a few hundred, will become rather irrelevant as long as the HIV remains suppressed, but if you want to be healthier and improve your general health & well-being, there are plenty of things people can do, like cutting out bad habits, eating healthier, exercising and looking after mental well-being. 

Just swollen feet

Have you seen a doctor about the swollen feet?