Bone pain and chills follow-up: Hi, everyone. So I... - MPN Voice

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Bone pain and chills follow-up

Cja1956 profile image
19 Replies

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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19 Replies
hunter5582 profile image
hunter5582

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."

ncbi.nlm.nih.gov/books/NBK5....

The potential pulmonary toxicity of HU is well established in the literature. Here are a few examples.

ncbi.nlm.nih.gov/pmc/articl....

europeanreview.org/wp/wp-co...

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.

Cja1956 profile image
Cja1956 in reply to hunter5582

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.

Take care,

Cindy

hunter5582 profile image
hunter5582 in reply to Cja1956

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.

StreetPastor profile image
StreetPastor

Wow, your doing well by carrying on whilst having pneumonia. What a warrior you are 💪🏼

Cja1956 profile image
Cja1956 in reply to StreetPastor

Thanks so much for your kind words. It’s so nice to have so much support on this site.

Hopetohelp profile image
Hopetohelp

Sounds like you have been through an awful time. Hurry up and get better. So interesting that your figures went down. Thanks for sharing

Cja1956 profile image
Cja1956 in reply to Hopetohelp

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.

DJK12 profile image
DJK12 in reply to Cja1956

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

Cja1956 profile image
Cja1956 in reply to DJK12

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.

DJK12 profile image
DJK12 in reply to Cja1956

It's scary how wiped out one feels. Just accept any help offered until you feel stronger.

katiewalsh profile image
katiewalsh

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

Cja1956 profile image
Cja1956 in reply to katiewalsh

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.

Foodies profile image
Foodies

So sorry to hear that you had such a hard time. Take care and go gently.

Cja1956 profile image
Cja1956 in reply to Foodies

Thanks so much.

azaelea profile image
azaelea

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

Oscarsboy profile image
Oscarsboy

May you soon feel fully recovered and have that opportunity to discuss all the issues you have with a satisfactory outcome.

Jean24 profile image
Jean24

Happy that your on the mend. Just take it steady, and continue to rest. X

Fizzydog profile image
Fizzydog

I hope you start to feel better soon x

Cja1956 profile image
Cja1956 in reply to Fizzydog

Thank you.

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