Frozen shoulder and now upper arm and shoulder pain with light tinnitus.

[RietFontein]

Good morning,If someone can shed some light please. I was diagnosed a year ago with prefibriotic myelofibrosis. Was prescribed Hydrea 1000mg daily for 5 days and 2 days of 500mg (Fri/Mon). All blood parameters within limits for the year and seeing my haemt once every 3 months with full blood count. 2 months ago I suffered with what was diagnosed as a frozen shoulder (right side only). After a Celestone and Zylotox injection into the joint - all ok for 2 months. I now developed general pain in upper arms and shoulder muscles/joints. Bad enough to keep me waking up at night. What can I take for this and is the MF or the Hydrea the cause? To add to this I now also (3 weeks) a tinittus in both ears. ENT could find no problem.

[hunter5582]

Hydroxyurea can cause arthralgia, joint pain and extremity pain. It would be reasonable to suspect that this is an adverse effect; however, it could be something unrelated. While not common, it is possible that the MF is contributing to the shoulder pain. Even if the shoulder pain is unrelated to either the HU or the Pre-MF, the overproduction of inflammatory cytokines caused by the Pre-MF could exacerbate the problem.

If the assessment by your orthopedist does not reveal a clear cause, it is very reasonable to investigate the HU and Pre-MF. It would be most effective to consult with a MPN Specialist rather than a regular hematologist. If this is MPN or MPN treatment related, it is not a common issue. You will need MPN expert consultation to sort it out. Just in case you have not seen it, here is a list mpnforum.com/tsr-the-list/ .

[RietFontein in reply to hunter5582]

Thank you - I will follow up with your advice this week!

[EPguy]

Very sudden T (tinnitus) for no obvious reason is unusual. I'm aware of T as mine got worse from a drug reaction. Certain antibiotics can also cause T. T via HU has this page come up with some discussion but this seems isolated, and not a pattern.

mympnteam.com/questions/60b...

In some cases T can be improved with steroids, but this is most effective when done promptly. You could ask your ENT about it, but not all are supportive of this therapy, my ENT Dr was not into it. This is one example of such a report:

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

I found Lipoflavinoid effective. This is a brand you can buy online. It's most likely to work if your T is recent as yours is. But I'm off it for now since I'm way over vitamin B6 limit and it has some. My T has increased without this stuff as I've reconfirmed a few times. Ask your Dr before taking any supplements.

All those events starting near same time is notable. Did you get any vaccines or infections prior to the start of it all? You can see my history why I ask about vaxes.

Autoimmune disease can mess with all the things you're suffering, less likely to suddenly present since you're not on IFN, but you could ask your Dr to check a blood panel for some basic ones.

[RietFontein in reply to EPguy]

Thank you - will add your comments to another answer and discuss with my dr!

[Barney50]

I am 74, female, PV, JAK2 + and on Jakafi with 22 months normal blood counts. Last October, my calcium numbers rose from 7.50 to 10 in 3 months. Was referred to ann endocrinologist who found I had hypercalcemia and primary hyperparathyroid disease. Scan showed 1 gland affected and additional adenoma on the parathyroid. Just had surgery 2 wks ago for removal of both. Results: pain in various joints and muscles are mostly gone. The reason I mention this is both the surgeon and endocrinologist both said this condition can show up anytime and mimic other causes. Well worth checking.

For me, the changes in pain, muscle weakness, sleep issues and brain fog have been life-altering.

Sometimes, we can be misdiagnosed but thought I would share my outcome.

Best thoughts for finding the right answer!

[RietFontein in reply to Barney50]

Thanks for your reply - another valuable input to add for my visit to dr!

[DiveGoddess]

RietFontein, Thank you for your post. When people share and others like EPGuy and Hunter respond I learn so much. I don’t feel so isolated being part of this group. I don’t have any advice, but want you to know, how your post has helped me. Best of Luck, Christy

[RietFontein in reply to DiveGoddess]

Thanks! Yes, everytime I hit a "low" and turned to the members for help - they respond positive. Great group of people!