I was diagnosed with PRV in December 25 and was given venesections and Hydroxycarbamide. Ended up in hospital as had a terrible reaction to the drug and lost the use of my legs along with a temperature of 41.5. Specialist nurse said it wasn’t likely to be the drug but yes it was. As stopping and starting brought on same issues.
However, to cut a long story short,my next two blood tests showed my bloods right back to normal and it was decided that it was the testostetone that had caused the high haematocrit and haemaglobin. (Testostetone prescribed years ago due to diabetes).)
However, said they were silly to start theHydroxycarbamide so soon.
I’m now getting morning diarhea and fullness feeling. Had a full abdomen scan so it’s not my spleen. Had bloods and FIT test and all fine.
Is there anyone in here who would know if the Hydroxycarbamide, that I took for six weeks could have caused this.(that I evidently shouldn’t have had).
GP doesn’t know really and just going through the motions. Am seeing the consultant haematologist in July..
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Hello there @jeaneypeaney, welcome to the forum. Sounds like you’ve been having a tough time of it since that diagnosis. Can I just check that by PRV you mean Polycythaemia vera ('PV')? I only ask as there are so many acronyms used with blood disorders, and healthcare generally!
I’ve taken hydroxyurea daily since diagnosis with Polycythaemia vera ('PV') 3 years ago so have a non-medical understanding of what you’ve shared. I’m really sorry you’re experiencing that diarrhoea and fullness. Great stuff that it’s not your spleen, one less thing to worry about I’d say. I was checked for this too. As you say your blood is fine too I’d want to ask a specialist about all this.
Were you given a clinical nurse specialist number to call? Maybe the haematology department can clarify whether you have been diagnosed with Polycythaemia vera ('PV') or not, and if not what is the course of action considering you were treated with hydroxyurea and venesections. From what my haematologist has told me and the timescale you shared, perhaps too much time has passed since stopping the hydroxyurea for it to still be affecting your digestion?
I’d say waiting till July is too long and that it’s best to check and pass the stomach issues by a specialist soon. You could call the lovely Blood Cancer UK nurses who are experts in all this. Their free number is 0808 2080 888.
Hope that helps a little @jeaneypeaney, do please keep us posted, and don’t tolerate that diarrhoea for much longer.
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PRV - Polycythemia Rubra Vera. But as I said in my post it was caused by prescribed testostetone injections so once I stopped those all bloods went back to normal. So the consultant said I don’t have PRV (even though they started me on the chemo tablets) but they are keeping me under their wing for a while to do blood tests every six months. I do have a specialist nurse. They put me on Apixaban but just realised I didn’t need to be on those either now. I was hoping it was the blood thinners that was causing the diarrhoea but not so. I’ve seen the GP about the gastro issues and had different tests. But it still continues. Seeing her again this week. But I’m seeing the haematology consultant in July too. Assume my GP will refer me for a colonoscopy and maybe a gastroscopy. As need to know what’s going on. But really it’s haematology that can get tests done really quick at my hospital. So we’ll see.
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I see, thanks for clarifying @jeaneypeaney. Can’t say I’ve heard of testosterone causing Polycythaemia vera ('PV'). According to my haematologist it’s due to a random genetic mutation that can take quite some time to show up in blood cell numbers. Polycythaemia vera ('PV') is considered a slowly-developing chronic type of blood cancer.
But I’m not a doctor, so I’ll share the Blood Cancer UK information about Polycythaemia vera ('PV') here for your reference—obviously hoping that it does not become your diagnosis again: What is polycythaemia vera (PV)? | Blood Cancer UK
Glad that you have a specialist nurse and I’d urge you to trust their judgement, being an expert, and to follow up about those gastrointestinal issues. No one should live with diarrhoea in the long-term. I’ve read about hydroxyurea potentially causing stomach issues when taking it, but not months after stopping it. I take aspirin to thin my blood and haven’t taken Apixaban so can’t speak to experiences of that.
Like I’d say to other forum members going through similar, you don’t have to tolerate those stomach issues @jeaneypeaney. If I was experiencing that myself, whilst going through diagnostic testing as it sounds like you are, I’d want to chase up those doctors doing the testing and remind them that you’re ill.
I’ll tag the @BloodCancerUK_Nurses here as they’ll be best able to advise on next steps considering you’re in between testing and diagnosis and have those physical symptoms. I agree that you need to know what’s going on. You can also call them, like I shared above, on 0808 2080 888. Perhaps even calling NHS 111 might be helpful.
Just some ideas, I hope you have respite soon!
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Actually this is for my husband that I am writing. Testosterone causes a form of Secondary Polycythemia. The consultant mentioned it at the first appointment. But unfortunately prescribed the Hydroxycarbamide immediately. Then he had to have two venesections. But then one of the other consultant’s said ‘it was silly of us to start it so soon).
But it is most definitely a cause of secondary Polycythemia. Once the testosterone was stopped all bloods went back to normal.
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Ah so interesting @jeaneypeaney, I happen to see an endocrinologist so I’ll ask next time about the testosterone link.
You just jogged my memory as I’ve heard of a non-cancer raised red blood cell disorder called erythrocytosis, sometimes simply polycythaemia (no vera, rubra, etc), which might explain that original diagnosis of Polycythaemia vera ('PV') being withdrawn: Erythrocytosis - NHS
And of course, you weren’t silly for starting the medicine as your husband was told to by a consultant, although I would question their haste without a thorough diagnosis.
Anyway, I’m glad your husband’s blood cell numbers are back to normal, that’s always my goal with my own. Keep us posted about how you both get on @jeaneypeaney.
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Dear @jeaneypeaney,
Welcome to our forum although I am sorry for the reasons you are here and all that your husband has been through in the last 6 months.
It sounds unfortunate that the team started the hydroxycarbamide before realising this was a secondary cause. I am glad to read everything has improved now the testosterone has stopped.
We do know that hydroxycarbamide can cause constipation or diarrhoea however this would likely resolve when stopping the drug. Although I cannot say that with certainty. Talking to a pharmacist might be a good idea to understand a bit more about this.
Speaking to the GP sounds like a good next step as it does sound like some further investigations are required.
Do let us know how you get on, you are welcome to call us any time on 0808 2080 888.
Best wishes,
Heidi J (Support Services Nurse)
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Thank you for your reply.
Yes it was a shame they put him on the Hydroxy along with venesections when he didn’t need them. But some might say at least he doesn’t have PRV now so nothing to moan about.
However, we have a wonderful proactive GP and he’s been referred to the Colorectal dept at our hospital and he’s had a cancellation this Thursday with a consultant. So hopefully we can get to the bottom of it (pardon the pun) 
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Oh that’s brilliant news, its not often things happen so quickly!
Do let us know how things go, lets hope you get some answers!!
Love the use of the pun!
Best Wishes,
Heidi J (Support Services Nurse)
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