Meylofibrosis/Hydrea

[RietFontein]

Hi everyone - new on this forum! Diagnosed with Meylofibrosis Sept 23. On Hydrea and blood counts within normal limits within weeks. Now on 1000mg per day except mon&tue - 500mg. All is well.Since last week I have been battling with painful right arm. Diagnosed with frozen shoulder. Anybody that might have heard of similar problems? Is it the Hydrea?

Also, I read somewhere on this forum a person asking about vit c supplements. Be careful - I used vit c (1000 mg per day) as supplement. Within weeks my iron bloodcount went seriously high. (Big problem). Vit C helps with absorption of Iron. Iron overload cause lots of side effects and is difficult to lower to within acceptable limits (just for info!)

Hein

[Cja1956]

Sorry to hear about your diagnosis. I have post ET MF. I took Hydrea for about 3 and a half years but it caused many other issues. I became “pre transplant” at the beginning of 2023 and in June, the transplant doctor switched me to Jakafi and many of my symptoms went away. Now he’s saying that I can put off the transplant for now. I guess I’m saying just be careful with Hydrea.

[hunter5582]

Hello and welcome.

Sorry to hear about the MF diagnosis. Getting the right care is very important MPNs. MPNs are very rare disorders and most hematologists have little experience with them. It is important to consult with a MPN Specialist to ensure optimal care. Here is a list that includes some MPN expert doctors in South Africa. mpnforum.com/tsr-the-list/

There are various treatment options for MF. Hydrea (hydroxyurea) is used off-label to treat MPNs. There are other options that are approved for MF, including Jakafi, which is a JAK-inhibitor. Suggest you review your options with a MPN Specialist.

Hydrea is a form of chemotherapy (cytotoxin) that works by altering DNA activity in hematopoietic stem cells and other cells in your body, Some can tolerate it and benefit, but not all can. Hydrea can have adverse effects, but I do not think that a frozen shoulder is one of them. Here is some information about this medication that you may find useful.

drugs.com/monograph/hydroxy...

epocrates.com/online/drugs/...

oralchemoedsheets.com/sheet...

ethrombo.blogspot.com/2017/...

Wishing you all the best as you move forward.

[RietFontein in reply to hunter5582]

Thank you for the reply - will contact one of these doctors in South Africa.

[LT55]

I can't speak to any links between frozen shoulder and hydrea. I will, however, offer some unsolicited advise about frozen shoulder - I have had it in both shoulders, which is common (i.e., if you get it in one shoulder, you are likely to get it in the other shoulder in the future). My occurrences were separated by two years. The good news is that it should never recur in the same shoulder!

When I had this in my first shoulder, it was miserable! Doctors told me to take ibuprofen and try therapy, neither which really helped. I finally found a physician (about six months post-diagnosis with a fully frozen shoulder) that gave me a steroid/cortizone injection, which was a life saver - it didn't stop the shoulder from being frozen, but stopped the pain. Was a full year before I had my range of motion back.

Two years later when I got it in my other shoulder, my first visit (within the fist two weeks after I noticed the first symptoms and my shoulder was not fully frozen - i.e., still some range of motion) was to the physician that helped me the first time. He gave me a cortizone shot. Not only did this stop the pain, but I didn't lose as much of my range of motion as I did the first time, and I was fully recovered in six months.

Hope my experience helps...frozen shoulder is not fun.

[Jamesxyz]

Hi,

I doubt there is any connection between Hydrea nad frozen shoulder.

Hydrea is a med very well tolerated by most. Most don't even know they are taking it.

Just curious. Was MF your first mpn diagnosis, or were you previous

diagnosed with PV?

Best wishes.

[RietFontein in reply to Jamesxyz]

Thanks for the reply. Had my first indication someting wrong during normal medical with full blood count. Only the platelets were high (650). Nothing else whatsoever.

After third month and another test: platelets still high. GP referred me to specialist who did bonemarrow biopsy (Sept 23). Diagnose: pre-fibriotic meylofibrosis. Started next day on 1500mg Hydrea daily. Result within a week platelets reduced - 3 weeks of weekly testing - platelets normal. He is happy with all blood parameters - reduced blood testing intervals and 1000mg of Hydrea 5xweekly and 500mg twice (mon/fri) with result staying good. Three days ago new decicion with steady blood-counts - blood tests now once every 6 months with a visit to the practice.

Two weeks ago the shoulder issue started and progressed quickly - very painful with limited arm movement. Othopediac surgeon did various scans and diagnosed frozen shoulder. He gave me cortizone injection into the joint (using live sonar to ensure correct location!) Immediate relieve! Good night of sleep - holding thumbs it keeps on improving. He doubt that Hydrea not a factor!

[Jamesxyz in reply to RietFontein]

Othopediac guy sounds like a good Doctor.

Hoping you continue to improve.

Best