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JAK2/PV who’s on HU and Low Dose Aspirin
Hello. Has anyone with JAK2/PV who’s on 1000mg HU and Low Dose Aspirin daily, had an epidural or back surgery? What was your experience and prep for surgery?
My back has been bad for years and has gotten much worse since HU diagnosed. I’m not relating those but I have seen some comments here that HU may have caused back problems. I had an MRI confirming a lot of degeneration, disc, etc. and I’m going for neurosurgeon consult.
I’m wondering about bleeding risk?
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Hi @christina3444. I’m sorry to read that your back pain is so miserable. I swear, when the back hurts, you hurt everywhere! I hope you can find some relief soon!
While you’re waiting for other members to comment about having surgery while taking HU or if they’ve had any issues with back pain on the drug, I can at least offer info on having surgery while taking aspirin.
Your surgical team will or should be giving you instructions for what to do preceding your procedure.
Medications or supplements that act as a blood thinner are stopped one week before so that the risk of bleeding is minimized. It can take about a week for the effects to be out of your system. However, it’s important to speak with your prescribing doctor and the surgical team before just stopping any medication.
Those will be good questions for you to ask when you have your neurosurgical consult. When is your appointment?
@loribmt Hello and thanks.
My consult isn’t until 2/26 so there’s plenty of time to make myself a little nuts! Everyone on this forum is so helpful I wanted to hear from anyone who’s had a similar experience.
I’ll be seeing my hematologist prior to speaking with neurosurgeon so I want a list of questions ready.
Again, Thsnks for your input!
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2 Reactions@christina3444
Good morning Christina
I know. Exactly what you are going through! It’s awful
From personal experience, I would urge you to get good physical therapy and do the exercises faithfully!!
I have learned that when I fail to do my PT EXERCISES
I pay the price of PAIN !!
Good luck ! Maybe you will be lucky and your back pain will improve before the surgery! Again ❤️🩹Hanya
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5 Reactions@hanya I agree about the PT!! I had lower back pain and found out I had arthritic degeneration of vertebrae in lower back. I also learned this is pretty common and that some people have little or modest pain while others have a lot of pain. I did the exercises, rested and recovered completely. How, I sometimes get flare-ups and I get acupuncture treatments which help me a lot with the pain. I am no expert, but you may have had some degradation of the vertebrae and the PV and or HU caused more inflammation. I have ET and have experienced new pain in hands, feet and even my iliac joint. Again, the acupuncture, massage and. Revise helped me with the pain.
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4 Reactions@hanya Good morning Hanya.
I hate that you’re sooo right. Last year I went to a great PT at Mayo for about 6 months. I was even inspired to buy a recumbent elliptical like the one I warmed up on there! Since it became obvious that everything the PT taught me I could do at home, I’ve been pretty good about doing the program three times a week. And, because the only form of exercise I have ever enjoyed is sitting comfortably whike reading a good book or watching an old movie, Im proud of myself.
But, my increasing inability to stand upright for more than a few minutes without pain or sitting down is getting worse and I wanted to know what might be done.
I have refused any surgery for years and years but wanted to know what might be “new” and also about epidurals (I had a series of those in the 70’s and they were amazingly successful.
I’m in no hurry for any surgery.
But, it never hurts to ask and seek out an opinion.
Thanks for your words of encouragement! Christina