Hospital appointment

[Poppy112]

Just after some advice went to my follow up haematology appointment today and my platelets were 519, 3 weeks ago they were 552. At diagnosis of PV in December they were over 1000. I am currently on interferon Alpha and have no problems with this. However my haematologist this morning was very negative and appeared disappointed that my platelets weren't lower and within normal range. She has advised I increase my Interferon injections to 4 times a week from 3 times.

I feel quite positive with everything at the moment so was a little shocked at her reaction after all it is only 3 weeks between tests and they have reduced and have reduced significantly since diagnosis. Don't want to question her but just wondered just slightly longer on the original dose of 3x weekly would be better? I have left a message for my clinical nurse specialist for advice but just wondered if any of you lovely people have any thoughts.

Jen

[MPort]

Hi Jen,

I have just a few comments to make from my experience.

Interferon is known to be a slow and steady drug. Takes a while to become active. And if you have PV it is intended to lower your red cells. When I started on it I had occasional venesections to keep the red counts down. These caused the platelets to rise. So it was swings and roundabouts for quite a while.

And lastly due to travel I have come across many haematologists. For most interferon was unknown or at least never prescribed. I recall teaching them about it!

Hope this gives you insight into your situation.

Mairead

[Poppy112 in reply to MPort]

Thank you for your reply my haemocrit is 0.46 yesterday and has not changed since last time. I did consider this may be the reason for increasing the dose however all she talked about were my platelets and never mentioned my red cells. I have never had venesection I assume due to the platelet level. I am normally quite assertive at appointments but she threw me with how rushed the appointment appeared and it was only when I got home and compared the last 2 blood results there does seem to be an improvement, yes slow but maybe as you said that's how interferon works. Thanks again.

[Johnsb in reply to Poppy112]

I keep a log of all my levels and have it with me at my appointments to review. Our bodies do change day to day. My haematocrit has swung from 33 to 40 in 2 days and then slowly over two weeks drifted up the 45.3. Having a log makes it easier for the doc and you to discuss.

[Poppy112 in reply to Johnsb]

Thanks great advice thank you.

[Ebot]

I can’t comment on the particulars of the dosage, I just wanted to say .... definitely follow up with the CNS or email the haematologist and ask for a more detailed explanation. I know exactly how you feel after what appears a rushed or unsatisfactory consultation. Especially one where you’re caught off guard by a response or proposed course of action. Your brain is whirling, digesting the information, you can’t formulate the right questions - and suddenly you’re the wrong side of the door! Hope you get the answers you seek.