Blood clots

[Windy51]

Hi everyone I have had the pain in my back for awhile my Doctor sent me for a chest X-Ray today I had a canular in with dye to see if I have a clot I hope not I go back next week I got a good report from my last blood test I had around 890 in platelets I am on 1000mg a day of Hydrea I have gone down to 491 in three months so it’s working my hospital doctor want me down to 150 hope all are feeling good as can be 🌻

[hunter5582]

Lower back pain is listed as a potential side effect of HU. Not sure if that bears pn what you are experiencing.

mayoclinic.org/drugs-supple...

Do you know why the doc wants you down to 150 on the platelets? That is at the bottom of the normal range. Have you been highly symptomatic? (DVTs, TIAs, thrombosis or hemorrhage).

Here is a presentation on ET that may be of interest.

youtube.com/watch?v=hbVr9u3...(Not working as expected?)

[Windy51 in reply to hunter5582]

Hi I don’t know this is the hospital doctor I thought that was normal range and my pain is upper back pain radiating type I go back to my normal doctor on Monday for my results for scan

[hunter5582 in reply to Windy51]

Depending on what lab you are at, the normal range and be different (150-450, 140-440, 163-369 - that is just my various labs). The common top of the "normal" range is 450. There is no reason I am aware of that any doctor would target the bottom of the normal range. Even doctors that still try to sanitize blood cell numbers in the absence of actual symptoms seem to target the top of the normal range, not the bottom. Bear in mind that HU is a toxic substance so you want to use the minimal dose to achieve the desired clinical benefit. Be sure to have the treating doc explain why the clinical target has been set and what evidence there is in the research to support that target.

Here is a quick presentation that touches on some of these topics. It is about PV, but actually does apply to ET too.

vjhemonc.com/video/4kie_7r9...

It really does sound like consultation with a MPN-Specialist is needed at this point. I expect you have seen this before, but just in case, here is a list mpnforum.com/list-hem./ .

Regarding the back pain, I sure hope you get answers soon. It is really hard to sort out sometimes what is the MPN, what is the drugs used to treat, and what is completely unrelated. I also have chronic back pain from age-related spinal deterioration. I have get the most relief from regular massage therapy and stretching/light exercise. Back pain is such a generic symptom, it really can be a lot of different things. Hope you get relief soon.

[Windy51 in reply to hunter5582]

I have upper back pain

[hunter5582 in reply to Windy51]

I get that too. Back pain is tricky to sort out. Some of the things I have learned dealing with back pain is that the source of the pain is not always where the pain is. The back operates as a complex system of bone, muscle and connective tissue. Assuming what you are experiencing is musculoskeletal, the things to sort out include: spinal deterioration, arthritis, alignment of the vertebrae, overt injury, etc. The MPN does make us more prone to inflammation related issues so that may also play a role. I have had significant problem with back pain, and have found some things that help: massage therapy, physical therapy, exercise/stretching (done properly), going to "back school" to learn some tips about moving in ways that protect the back. A good place to start is with an orthopedist who specializes in the spine. IF you can rule out major skeletal issues, then you can focus on the muscles/connective tissues. A skilled massage therapist can work wonders with this. You just have to find one who really is good. FYI - the back is one of the most common places that stress is manifested in the body. Not sure if that is relevant, but it certainly is true. Massage therapy helps with that too.

Hope you get it all sorted out ASAP.

[Windy51 in reply to hunter5582]

thanks

[Windy51]

I’m happy to say I don’t have a blood clot