Neutrophils decreasing alert!

[lightalltheway]

Hello,

First thank you for this forum which is a helping hand from heaven especially for patients who lives in the 3rd world with so little medical care access.

I was diagnosed last year and since then I am on ART (Complera) once a day. I am undetected since the 2nd month from starting my medication, my CD4 count is increasing but so slowly. my nadir was as little as 10 and now on two repetitive tests is 81 and 82.

I was thinking that my biggest concern is how to increase my CD4 count until I spoke with my dr overseas last night and he told me something I wasn't aware of which is my Neutrophils, they are decreasing since I started my treatment as following:

- January 2017 Neutrophils count 1.09
- May 2017 Neutrophils count 1.03
- August 2017 Neutrophils count .71

He explained that neutrophils are defensive for bactiria and low count is not a good sign. I should re-do the test in 6 weeks because he might change my medicine/ regime.

My doctor is not approachable, I feel completely scared and lost. I couldn't sleep since last night just reading about it and I honestly need some help and assurance. What medication will he give me as an instant? and am I under serious risk of infection? how does it work? and will it ever improve? I am doing ok with Complera and I am so worried about changing it for another one now. (Not to mention the difficulty for treatment access)

Every day I motivate myself, sometimes I win and sometimes I lose. now I feel completely lost and really loosing hope and control over what I am doing. The journey is so lonely and tiring. I don't want to sound pity, I am just being honest.

with all what I am experiencing, I always think of you all guys, and all the pain you suffer and I cant help it but to keep praying for each one of you.

Prince

[Jim Allen]

Hi

Sorry to hear your concerns.

Some people have lower-than-average neutrophil counts, but not an increased risk of infection. It does not tell a full story and overthinking it will not help 

spoke with my dr overseas last night and he told me something I wasn't aware of which is my Neutrophils, they are decreasing since I started my treatment as following:

- January 2017 Neutrophils count 1.09
- May 2017 Neutrophils count 1.03
- August 2017 Neutrophils count .71

Neutropenia, well there are a number of possible causes, so keep working with your doctor and do keep in mind the results you have are just snap shot moments, don't fly into panic mode.

he might change my medicine/ regime.

Neutropenia is a less common to rare side effect in some people who take emtricitabine (Its one of the drugs in Complera)

So it sounds like your doctor has a plan in place, if the counts will return to normal depends on the cause of the neutropenia. If it is the meds, and you switch than with that and time this should resolve the problem, however you should ask them next time you see the doctors what they think.

If there’s an underlying OI or condition or infection then identifying it and treating it that would be way to go, I would expect they have checked and tested.

What medication will he give me as an instant?

It could be just with switching meds + time the issue resolves itself however there is also this as an example. https://www.drugs.com/neupogen.html

To sum it up, Look your doctor has a plan, there is no reason to panic and this is not a medical forum so we can't give medical advice Continue to work with your doctor and try not to panic in the meantime.

my biggest concern is how to increase my CD4 count

There is nothing you can do to increase your CD4 counts, other than suppressing your HIV so its not killing them to be crude, this by taking your HIV meds and other than that there is nothing you can do, except generally looking after yourself just like everybody else so no smoking etc etc


Jim

http://www.mayoclinic.org/symptoms/neutropenia/basics/definition/sym-20050854
https://www.drugs.com/sfx/complera-side-effects.html#refs

[lightalltheway]

Jim,

Thank you for your time and reply.

I surely know that we are not medical providers, we are only here to share our experiences about HIV and all the related issues to it. Such as when members discuss certain side effects of medication X or Y.

My neutrophils are way below the " accepted low " criteria and hence the Dr. brought up the idea of changing my medication. I fully understand that I cant do much to raise my CD4 count, I was just adding the new concern.

I am on antibiotic because of my low CD4 count and I really hope they will protect me from any potential infection that can be caused because of neutropenia.

I am meeting my Dr. again in six weeks, not to mention the hassle to make this appointment. I have to travel overseas 8 hours to see him and have my labs done.

Light all the way to you
Prince

[harleymc]

Your doctor mapped out a plan for how to assess this issue and you've gone into a panic about having a plan?

If your doctor had sent yu away from your last appointment with no strategy, that would be a concern, but it sounds like you're getting standard of care.

Chillax there's a lot of days and nights before 6 weeks is up.

[terrymoore]

My doctor is not approachable, I feel completely scared and lost.

Hi Prince,
i am guessing you are the same person that PM`d me. If your doctor is "not approachable", then find one who is. It is important to feel comfortable with your doctor - it made a big difference for me. Before, i had a doc that made me feel like a leper! Once i changed it was an entire different story, and in short, i had my life back again. Now i barely think of HIV (unless i am on this site! hahahaha)
I wrote to you the name of one very good option in BKK. I am sure there are others as well. Good luck!

[lightalltheway]

Hi Terry,

How are you today?

Yes I am " The one " and because of the mentioned reasons, I am starting to prepare myself to see the one you recommended. However, I spoke with the hospital and they didn't give me an actual time to be in the country for. So iam not sure how long should I stay there ..

[lightalltheway]

Hi Harly,

How are you?

Yeah obviously my Dr. has a plan for me but I am not like any other patient of his. I travel to see him for almost 8 hours. Not only this, but also, I d not have access for treatment/ Medication, and I have to buy it myself at extremely high price. Managed to have support with my current medication which I am on, struggled months and months until I was admitted for this programme. So changing medication is not as easy as you think. All this combined together makes me horrified. I guess you wont really understand unless youre in the same boat.

I am planning t write a blog about my whole story and journey as I am sure its not like any other and it will be eyes opening for many others about the difficulties to be Poz in a county where positive patients go to jail. What do you think?

Light all the way

[terrymoore]

Hi Terry,

How are you today?

Yes I am " The one " and because of the mentioned reasons, I am starting to prepare myself to see the one you recommended. However, I spoke with the hospital and they didn't give me an actual time to be in the country for. So iam not sure how long should I stay there ..

You need to call Bumringrad and book an appointment with him - i do it all the time. Results usually take a few days if you do them at the hospital. If at the Redcross it takes 5 days for both VL and CD4. Depending on your situation, the doc may want to see you soon after your first meeting. However, if all normal, he will see once every 3-6 months.