Anyone have idiopathic pancytopenia?

I never took Rituxin as I started improving
Went four months without infusions until yesterday was at 14,000 platelets
Got a transfusion then hives after one hour treatment of steroid iv then benefit
Will see two ucsf drs soon
T cell problem probably as T cell clonal reconfiguration positive
Drug of choice:Microphenalate

Now I’m needing platelet infusions again and neutrophils also very low
Had a reaction to platelets after one hour butIV dexamethazone and benedryl fixed that
T cell could be problem
Will see two ucsf drs soon🙏

I have had pancyopinia since 2005 when I had chemo for mantle cell lymphoma.

@wileywright how does it effect your life? Pancytopenia?

I get frequent lab draws to see my levels and transfusions if needed
I try to not injur myself
I can’t bike but I can walk🥰

I’m interested in this topic I know little about. I do have smoldering multiple myeloma and have consistently had low wbcs and low rbcs (with large rbcs and high erythropoietin levels), and now my platelets are becoming low but still barely in the normal range. But I can see the downward platelet trajectory and I expect them to be in the abnormal low range next blood draw. I am tired, yes, bone tired I call it. I did get iron infusions a couple months ago due to low ferritin, which helped. So obviously my bone marrow is struggling to produce. My MM specialist thinks I have another disease yet undiagnosed. MDS? But on bmb no blasts detected. Wouldn’t I see blasts with MDS? Does pancytopenia always have a cause or is it just idiopathic and doctors shrug? What is the usual treatment as the numbers decline? At what point do stoic docs get excited?

I have very low blood counts and was subjected to agent orange on the DMZ in Korea -1969 to 1970. I have what is called pantocapenia. I have been looking at research about agent orange and trying to find if there is a link. I am currently receiving disability and am trying to move forward with some research that would find a link. Benzene keeps popping up in my research. Does anyone know of a link to research about my low blood counts.

@harleewine First, let me thank you for your service in our armed forces. I’m so sorry to hear that you’re experiencing low blood counts, most likely in relation to this chemical.

Unfortunately Agent Orange was collateral damage for many of our soldiers. My bother served just a little earlier than your tour in 1960-61. He and his troop were doused with AO while on a training exercise. Many developed blood cancers, including my brother, who passed away only 4 years later from Hodgkin’s lymphoma at the age of 27.
Back then, the army denied any correlation between AO and cancer. But too many people have come forward over the years and it is now obvious that it is the culprit.
The side effects of this chemical have been studied over the years and there are clear links to the damage it can cause. Including but not limited to blood cancers, neurological diseases, heart related issues, birth defects and the list goes on.

The VA has a publication regarding the potential disorders brought on by exposure.
https://www.publichealth.va.gov/exposures/agentorange/conditions/
I typed Agent Orange into a search of our Connect site. Here are the results. As you can see, there numerous other members who were also exposed and having issues.
So please look through these to see if there are any that are relevant for you.
https://connect.mayoclinic.org/search/
Pancytopenia is a blood condition where not just one, but all your blood numbers are low. What type of treatment are you receiving for this? Is the VA helping with your treatment costs?

@loribmt I now have four conditions from agent orange that I am getting pension for at this time. My latest condition is a lameler hole in my left eye that will eventually lead to blindness. No treatment is offered by the VA for my low blood counts. There is no admission by the VA that they are caused by AO. My sympathy for the passing of your brother. Several of my co-veterans have died from various agent orange effects. I keep plugging away and try to keep a positive attitude. I am not going to give up and keep filing claims until I get 100% disability or die trying. Thank you for your comments and info. Harold

@harleewine, Oh golly, Harold, that’s rough. There are so many blood conditions being caused by the disruption to the DNA from Agent Orange. For the VA to continually deny you coverage is ridiculous. I’m so sorry you’re having to deal with this! You’re a fighter through and through…never give up! Your attitude is exemplary.