PV, Besremi, and bone pain--or injury?

[Ovidess]

I am a 66 year old who was diagnosed with ET then PV just as I entered Medicare age here in the US. I take a low dose of Besremi to keep platelets and HCT somewhat normal. I am experiencing unusual sharp and lasting back pain along the rim of the pelvis. The first two times I did not set it off in any way. Most recently I picked up a half bucket of soil and was in shrieking pain mode. A Physicians' Assistant surmised that the pain was not from an internal organ/gut source because it changed from right to left sides. An X-ray showed early arthritis, but physical therapy does not indicate any restriction of movement or pain. I'm continuing to go because I hope to strengthen the muscles of the torso. Because I have some unpleasant intestinal sensations too, and have had other mysterious sensations in the long bones on rare occasions, I'm trying to sort out what is PV, what is medicinal side effects, and what is injury or weakness.

Can anyone tell me what PV or Besremi bone pain is like?

[hunter5582]

PV can cause bone pain, particularly in the long bones. Besremi can cause musculoskeletal pain, myalgia and arthralgia. Besremi can also cause abdominal pain. The symptoms you are describing can occur for reasons other than the PV or the Besremi. Suggest that you consult with a MPN Specialist regarding these symptoms as they may be related to the PV or Besremi or both.

It can be hard to sort out this kind of pain. I have experienced significant lower back pain for a long time due to spinal deterioration and problems with tightness in my hip flexors. The singe most effective intervention has been massage therapy. Strengthening the core muscles also helps.

I woul dbe suspicious that your symptoms may be from a combination of causes. There may need to be multiple interventions to achieve relief. Wishing you success in making that happen.

[Hazelnut2020 in reply to hunter5582]

Hi Hunter5582. Are you taking besremi and for long? I know everybody is different. I am on HU for 3 months now and planning on switching to either Besremi and Jakafi come January 2025 due to the max $2k per year out of pocket for Medicare plan D. Read that both have bad side effects. Can’t decide on which one to switch to. I doubt my doctor can help me here. It might just be me trying out one for a few months.

How many months after besremi or Pegasys did you see any positive result?

[hunter5582 in reply to Hazelnut2020]

I started on Pegasys in May 2021. I switched to Besremi,i February 2022. I am currently on 175mcg, which is my max tolerable dose. I have found the interferons to be much more effective and far more tolerable than HU. I was refractory to and intolerant of HU. I started on PEG, it took about 8 weeks to get the PLTs in the 400s. I was severely iron deficient when I started on the interferons. Over time, the iron levels crept up as did the erythrocytosis. I now use a phlebotomy about 1x/year as I cannot increase the besremi any higher due to lymphopenia and borderline neutropenia. The good news is that my JAK2 VAF has reduced from 38% to 10%.

On the whole, my treatment with Besremi has been successful. It is more effective and easier to tolerate than HU for me. Note that we are all different in how we respond to these medications. I would suggest reviewing the contraindications.caution, adverse effects, and mechanism of action for both Besremi and Jakafi. Make a decision about which of these two medications best match your treatment goals and risk tolerance. Give that medication a try and see how you respond.. you can always change course is something is not viable.

Wishing you all the best.

[Hazelnut2020 in reply to hunter5582]

Thank you for response. Very educational reading all your responses to other members as well. All the best to you too.

[EPguy]

Have you done an MRI? This can show any stenosis which can press the spinal nerves and cause nerve pain in various areas. I've had neck and lumber MRIs. Reason to look here is your pain relates to a mechanical action (lifting the bucket)

Of course IFN can cause various troubles too. Are you still suffering the malaise?

[Ovidess in reply to EPguy]

I have not had an MRI for this, as the PA and the Physical Therapist thought it was muscular and not nerve pain because I could not always identify the pain with some strain, and because the pain appears on two sides, politely taking turns to torment me. I've still got the malaise (exhaustion, intestinal, phlegm, headache) to a great extent, though it is hard to sort it from fall vaccines and little viruses and colds going around. I keep your experience in mind and will try not to let anything go too long without notifying the hematologist that my quality of life is not great, despite fine tuning of the Besremi. Thanks for your concern and everybody's info, always so important to me.