Hi, everyone. So I posted a week ago Thursday that I woke up in the middle of night with intense pain in my legs and arms and terrible chills and shivering. It stopped after a while so I just went back to sleep and the next day I rested all day. Saturday and Sunday I felt better and actually had 2 very busy days. Monday night it happened again but much worse. I was also nauseous and had fever close to 103. My partner called an ambulance and I was admitted to the hospital for 2 nights. I had all kinds of tests done and it turned out I had pneumonia.
There were some interesting results in my bloodwork. In four days by hemoglobin went from 12.5 to 10.3, RBC from 3.25to 2.78, and my hematocrit, 37.1 to 31.9. Nearly all of my numbers were affected. My platelets went from about 840 to 633. My hematologist seems unconcerned so I have to assume that the pneumonia just wreaked havoc on my body. One more thing, I had a cat scan of my lungs and the doctor in the hospital told me I may have some fibrosis in my lungs.
Just needed to vent. Thank you all for taking the time to read my post.
All the best, Cindy
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Cja1956
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Sorry to hear about the pneumonia, It sounds like you had a really rough time with it. Hope you are feeling completely recovered soon. It sounds like something affected your bone marrow function- hematopoiesis , reducing production of multiple blood cell lines. Hope this sorts itself out as well.
If I recall correctly, you currently are using hydroxyurea. If so, I would suggest following up on the fibrosis in the lungs as this is a known adverse effect of HU. It can lead to more serious complications.
"Hydroxyurea can cause severe interstitial pneumonitis.[21] It can even occur after several years of initial treatment with hydroxyurea. If not diagnosed, drug-induced interstitial pneumonitis can lead to lung fibrosis and respiratory failure. The recommendation is to discontinue the drug."
This certainly does not mean that HU toxicity is what is going on. It could be something else; however, it is something that should be ruled in or out. It is not something to ignore as the consequences can be significant. This is definitely something to consult a MPN Specialist abut as well as a Pulmonologist.
Hope you are feeling much better soon. Please do let us know how you get on.
Thanks so much, Hunter, for your valuable information. I skimmed the three articles and I think I probably do have hydroxyurea toxicity. I’ve been taking it for 13 years. I dread taking it even one more day. I see my hematologist in 4 weeks and I’ll talk to her about switching to something less toxic.
I really appreciate all you do for everybody on this site. I know you’ve helped me so much through this journey.
i hope the information does help you figure things it. Please do let us know what you learn in this process. We can all benefit from your experience and the knowledge you gain. We are stronger and more knowledgeable together.
Yes, it was awful but I’m feeling a little better every day. I agree with you about my numbers . I think just having the infection just put my body on overload. Thanks so much for your support.
You have been having a very unpleasant time. From having pneumonia a number of times as the CRP number went up the others came down, sometimes prompting an interim transfusion. Take great care of yourself and be careful not to overdo it too soon. Also be very alert to the slightest sign of it returning. My haematologist gave me a second dose of a different antibiotic last summer after the first one finished - there had been no follow up to the discharge from the medical ward - and in fact it needed a third to finally get rid of it. Diana
I’m sorry you had such a hard time. Thanks so much for sharing your story. My CRP also was high. When I read the information on it, it says it means that there’s a lot of inflammation going on in your body. I wondered if that was causing all my pain. Once I started on the antibiotics, the pain began to subside. My legs are still very wobbly and weak.
Hi. So sorry to hear this. And how strange it went away a few days & then returned. Have you ever tested positive for COVID? If so I’m wondering if it could be related to that? Please take things easy until it’s all cleared up. Katie
Hi, Katie. So the first thing they do when you come to the emergency room, especially with my symptoms, is to put you in isolation and give you a Covid test. I was negative. After they admitted me, the doctor on staff gave me a blood test that looked for 15 different viruses. I was negative on all of them. They found the pneumonia through a CAT scan of my lungs.
Thanks so much for your support. I hope you’re doing well.
So sorry to hear what you’ve been through and do hope you’re now on the road to recovery. Interesting to see what your bloods did and also to read Hunter’s post regarding Hydroxy toxicity. Hope you get some answers from your Haematologist at the appointment. Regards, Fran
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