PrEP anemia?

[+ robear]

My last CBC showed my RBC as 3.27 and hemaglobin at 12.5.  These are quite low and described by more than one doctor as "slightly anemic." All other blood counts as well as my comprehensive panel are fine. My PCP checked my folate and iron levels, they are normal. The low counts were first noted during pre-surgical testing about a year ago, and the doctor's comment was that it could be because I'm taking Descovy for PrEP. The University of Google says this is a known but rare side effect of the med. My counts have not been historically low, including the period when I was taking Truvada, the low counts seem to more or less track with my switch to Descovy.

My question for the panel is, has anyone else experienced red blood cell suppression with PrEP meds?

[+ nycman]

Sorry. Off topic.

My dyslexia read the title as “Prep Enema”.

My first thought was “is there anything these dudes won’t try shoving up their asses”?

And my second thought was “that’s not gonna work”.

grin.

[+ SirBillybob]

If emtricitabine (FTC) is the component possibly responsible for anemia then TDF vs TAF is a moot distinction for tenofovir type and your switch simply carried over and maintained the adverse event … which tracks with your pre-Descovy trend. So I suppose you need to drill down into the literature on individual components to seek evidence of associations. A ‘washout’ may alleviate the anemia signals and help discern the association, but renders you unprotected. 

If FTC is indeed the problem your PrEP playbook may require a different switching up consideration to cabotegravir or lenocapavir after screening for their relations with red blood cell alterations. I cannot find a current study that would spare you getting inadvertently randomized to the Truvada arm and you cannot pre-select assignment to new PrEP candidates in development unless it’s an earlier phase trial for tolerance and drug levels; even then you would not get subsequent access to it in a sustained fashion until it hit the market following successful Phase3 results deeming the different drug class product noninferior to Truvada in effectiveness.

Edited Saturday at 05:20 PM by SirBillybob

[+ purplekow]

This degree of anemia is inconsequential for the most part as long as there are no related symptoms.  It may be related to drugs or simply a result of aging process, chronic disease or mild bone marrow suppression from other causes.  As long as you are not symptomatic and as long as this is not worsening, this is not anything to get concerned about unduly.  Have your blood count checked regularly and perhaps a reticulocyte count to make sure your body is producing enough new red blood cells.  An MCV value may shed some light as to the cause and it is usually reported with the complete blood count.  Should the count continue to fall significantly or if symptoms appear, then a full evaluation would be warranted.  It does not seem as though your physician felt too much concern but perhaps you should have a brief discussion with your provider as to the nature of your concern.  

As SirBillybob suggested, stopping the drug might give you an answer as to whether it is the cause of this mild anemia, but the risk of that is certainly greater than the mild degree of anemia you now have.  

Edited Sunday at 12:29 AM by purplekow

[Rudynate]

I live with mild anemia: elevated MCV, HGB and HCT slightly low.  They are always that way.  My PCP and my Hemo aren't worried, so I'm not worried.  Interestingly, in the year that I've been on Prep, the anemia has disappeared.  Time will tell whether or not that change is permanent.  I don't believe that Prep has cured my anemia, but it also appears that Prep doesn't cause anemia, at least not in me.

[+ robear]

Thanks for the thoughtful and informed responses. At the age of 70 my use of PrEP is part of a largely hypothetical sex life, and is more in the line of honoring fallen comrades: I take it because I can. (I know that sounds silly, but it makes sense in my world.) I whored my way through the late 70s well into the PrEP era unscathed, and in my day my body count was sometimes prodigious, so concerns about HIV are historically manageable for me with or without prophylaxis.

My thought now is that the loss of any small measure of "vitality" caused by a PrEP regimen might not be worth it. I could try going back to generic Truvada, or drop it altogether. (It seems likely that the current 100% coverage under Medicare Part B will come into the crosshairs of the current regime at some point, anyway, necessitating a return to generic Truvada.)

I'll continue to monitor, I have a 6-mo checkup with my PCP in March and will ask him to order another blood panel at that time.

[Rudynate]

9 hours ago, Rudynate said:

I live with mild anemia: elevated MCV, HGB and HCT slightly low.  They are always that way.  My PCP and my Hemo aren't worried, so I'm not worried.  Interestingly, in the year that I've been on Prep, the anemia has disappeared.  Time will tell whether or not that change is permanent.  I don't believe that Prep has cured my anemia, but it also appears that Prep doesn't cause anemia, at least not in me.

I forgot one thing - the hemo said that there is a slight chance that the mild anemia could progress to one of those bone marrow cancers like multiple myeloma or myelodysplasia.  I rarely think about that, especially now since my bloodwork has improved in the last year.

[Youngdad4ever]

I’m going to start taking Descovy next month, and I’ll keep you posted on my blood work. I hope it doesn’t affect my iron storage

[+ purplekow]

On 12/21/2025 at 10:16 AM, Rudynate said:

I forgot one thing - the hemo said that there is a slight chance that the mild anemia could progress to one of those bone marrow cancers like multiple myeloma or myelodysplasia.  I rarely think about that, especially now since my bloodwork has improved in the last year.

I guess in the age of full disclosure such information might have some point but ultimately, even if your blood was totally normal, there is some risk of multiple myeloma or myelodysplasia.  An elevated MCV has very few causes the most come far and away is idiopathic, essentially you just have it.  Folate deficiency especially in heavy alcohol users, B12 deficiency, folate inhibitory drugs, and very rare blood cancers are other causes.  Unless your doctor was Dr. Google, I am hard pressed as to why this very very very tiny nugget, though true, was slipped in to annoy your consciousness.  

[Rudynate]

I he might have mentioned it because I'm one of those types who always wants more information rather than less.  It hasn't kept me awake nights.