Bladder damage from HU ?

[NedKel65]

Hi all,

Haven’t caught up for some time so I do apologise to all 🥰

Have a question - has anyone experienced bladder damage from Hydroxyurea?

I recently had a CT scan which showed top portion of bladder is damaged. My GP said it is likely from HU.

I have been taking HU daily for approx 7.5 years on rivaroxaban abs blood pressure meds.

I have ET and PV

thanks in advance hope everyone is ok xx

[PhysAssist]

Hi NedKel65,

Could I request that you please be more specific in explaining what the exact finding was that was described as "bladder damage? That term is completely nonspecific so if your MD hasn't explained beyond saying that, you should really ask for a more specific explanation [or what the exact wording of the CT report was].

Given that, we can probably offer much more in the way of information and support.

Also, what was the reason behind getting the CT-scan in the first place ?[if that's not too impertinent to ask...] Specifically- were you/are having any bladder-related symptoms?

When I was on Hu [which was only for about 5-6 months, I experienced any number f side-effects, but the only bladder-related symptoms was increased urinary urgency [rarely to the point of droplet incontinence- once I realized what was happening].

Best regards,

PA

[NedKel65 in reply to PhysAssist]

Thanks PA will have more details when I see the specialist on 8/5 that was just a quick analogy from GP who was concerned with infection.

I was having CT scan bcause I had been feeling unwell, bloated, stabbing pain in upper abdo both sides and on examination haemo ordered CT scan. I previously had a GIST removed in duadenum and thought that might be the issue.

I will let you know when I see haematologist

Thanks for your support xx

[PhysAssist in reply to NedKel65]

Hi NedKel65,

You're so very welcome!

Good luck and god bless, I'll keep my eyes peeled for your follow up.

Best,

PA

PS: "What Hunter said", as I have yet to find any fault in any of Hunter's postings.

[hunter5582]

Given that HU can cause blood in the urine and difficult urination, it is reasonable to think it could affect the bladder. It is well known that it can cause renal impairment. I have not seen anything specific about how it can damage the bladder. Please let us know what you learn.

Hopefully you can consult with a MPN Specialist on this issue to gain more insight and review your treatment options. Fortunately, there are options other than HU.

All the best.

[NedKel65 in reply to hunter5582]

Thanks Hunter always read your replies you have so much compassion and support too !!

Yes I am going to seek alternatives to HU as also have a history of skin cancers ( had several removed) due to have a screen tomorrow 1/5 so hopefully no more at this time

Just wary being so many different side effects on all the medications offered for PV and ET

Blood tests are fairly stable overall so that may be the big consideration too

[hunter5582 in reply to NedKel65]

I looked at your Bio and see that it appears you may have a very rare double hit in JAK2 and CALR. Is that true? It does happen but it is very rare.

It sounds like your diagnosis is Polycythemia Vera with thrombocytosis as one feature of the PV. With a history of thrombosis, cytoreduction is certainly indicated. I believe that Besremi and Jakafi are both not available in Australia at this point, though I could be wrong about that. If that is so, then Pegasys is the only other likely choice for cytoreduction. Note that I did quite well on PEG before I switched to Besremi. It was easier to tolerate and more effective then HU and venesections.

I believe there is also a clinical trial underway in Australia looking at targeting the hepcidin pathway. This may be worth checking into. wehi.edu.au/news/iron-link-...

Hopefully you are already consulting with a MPN Specialist rather than a regular hematologist. This can make a big difference when dealing with a MPN.

Wishing you all the best as you move forward.