Doctor is against rescue prednison

Hey,

I was once hospitalized in 2021 for a very minor viral infection, where my counts dropped into single digits, and I was sent to the hospital.

Ever since then, I have taken this rescue prednisone regimen. A few other instances of such infections also showed me that counts can drop very quickly, matter of hours. You wake up in the morning, look into your mouth, and see symptoms.

Now this new hematologist does not believe in that. Past two doctors were ok with it. He says it could cause the flu or whatever the ongoing infection is to spread. He wants me to take a test to see if they are dropped, then only to be prescribed prednisone. 

This is very inconvenient since I live alone, and it is very scary to be in such a situation. Also lab currently takes multiple days (yeah, read it correctly) to give results. Even with a fast lab still it is still very inconvenient to disrupt my life and work to do that, as there is no guarantee when they will drop. What do you do? Take a CBC daily when you are sick to avoid a bit of prednisone?

His other suggestion was taking IVIG, but again very inconvenient due to the administration time and insurance approval for a viral infection. 

Are all these worth avoiding prednisone for a week? I usually just take 20mg for a week or so. I simply don't buy his argument as I know you guys have prednisone in your arsenal.

I strongly agree with you on this. You've found a method that works pretty well for you. I personally use a variation of it by taking a short, low-dose course of prednisone to ensure a safe count before an invasive test or procedure. 

Those of us who've been dealing with ITP for a long time know it doesn't have a one-size-fits-all treatment plan. So, when we find a plan that brings safe counts while causing the least amount of side effects and - not inconsequentially - alleviates the expense of hospitalization, it only makes sense to stick to it.  I've always stressed the value of finding an open-minded, cooperative hematologist to partner in treatment instead of a dictatorial one.

You can try to diplomatically work on changing his mindset. That sometimes works. I hope it will for you.

This here may agree with the doctor:  www.sciencedirect.com/science/article/abs/pii/S2468867321000754

I would go with papaya leaf extract, but of course that's just me, knowing it works for me. I would think that going for the prednisone because of illness could be bad timing.

I do certainly believe in having options, though, so you need the right help from your provider. 

If you suddenly see the bruising, petechia and mouth sores etc., you pretty much know your platelets are low. I have even cancelled a trip to getting a blood test once, because those symptoms told me the platelets were low. That would be the time to have your safety net in place, as you undoubtedly know. I'm not that familiar with sickness bringing on low platelets, but it sounds like you have that experience.

Actually, I should state that a month ago, I did seem to have some kind of quick bronchial infection that did coincide with a surprise plummet.

I am in your boat a little bit, too. After using my dexamethasone that was ordered 6 months earlier, I ran it by the doctor that it  would be nice to have a refill, he ignored. I haven't asked again. At least I have the papaya leaf extract as the net, but it would be nice,  even so, to have the dexamethasone on hand, too!

Hey Janet. Thank you! Great I have some allies. I have read your incredible story and hope I achieve remission too 

Itpjourney, thank you too! I see you are quoting an article on that (same as doctor). The argument is that we have a comorbidity. That means other side of the story is suffering a low count and/or being hospitalized. I live alone in another country and it is so inconvenient for me. Understanding all these risks and benefits, I should be the one who decides on that. I have scheduled a trip to my school city to visit my previous (lovely, democratic) doctor to refill some of these quality of life medications.

I would find another hematologist. No one knows your body like you do. If you know that is how your body reacts when you have a virus and you have had counts in the single digits, that is nothing to mess around with. It is imperative to find a hematologist that will work with you.