Hospital appointment : Just after some advice went... - MPN Voice

MPN Voice

10,762 members14,928 posts

Hospital appointment

Poppy112 profile image
5 Replies

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

Written by
Poppy112 profile image
Poppy112
To view profiles and participate in discussions please or .
Read more about...
5 Replies
MPort profile image
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 profile image
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 profile image
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 profile image
Poppy112 in reply to Johnsb

Thanks great advice thank you.

Ebot profile image
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.

Not what you're looking for?

You may also like...

Hydroxy or Interferon for ET Jak2?

Hi all I have been taking Hydroxy since the end of December (shortly after the diagnosis of ET...

recurrent infections

Hi was just wondering if anyone had any advice - I have for the last 2 years have had recurrent...

feeling quite fed up, is it possible that interferon doesn’t work for me?

hello everyone, I hope your all keeping well. Just after a bit of advice as I’m feeling quite...

Quick Question re. Taking Hydroxycarbamide.

Hi everyone, just to ask those of you with ET and taking HU, when taking two 500 mg capsules in a...

How soon should HU for ET work?

I've been on HU for 5 weeks, 2 weeks on 500 mg a day then 3 weeks on 500 mg one day and 1000 mg the...