Its been awhile since I've been on here . I would welcome your advice pls.
I was diagnosed with Triple Negative-Essential Thrombesemia last year. We are on our fertility journey and was wondering if anyone had any advice on the following questions:
1. Does interferon have any side effects for those individuals trying to conceive?
2. If I came off it does that also have an impact on fertility? The reason why I ask this is because I have recently come off monthly Pegasy injections (wasn't a high risk patient) but now my platelets counts has gone up from c. 600 to 1446! Not great I know. I just don't understand it enough to determine what's the best option when trying for a baby. I am in my late 30s so timings is not on my side also.
Would welcome your thoughts and advice.
Written by
Biscuitlove
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This is definitely a question to review with a MPN Specialist. While it is certainly possible to have a successful pregnancy with an MPN, it does require specialized care. There is some good information at the MPN Voice website. Be sure to review each of the pages on pregnancy which are in the Living with MPNs tab. mpnvoice.org.uk/living-with...
Very broadly speaking, the interferons are considered a safer option during pregnancy. Hydroxyurea is clearly contraindicated. Given your profile, you will need to carefully review all of your options should you choose to move forward with a pregnancy. Suggest that in addition to a MPN Specialist, you consult with an obstetrician that specializes in high-risk pregnancies.
Thanks hunter5582 . I didn't consider a obstetrician but will speak to my GP. I do find my hematologist consultant not very helpful at times. E.g. my platelet count has gone up to 1446 and he would only be "worried" if it went above 1500. Somehow that doesn't quite fit right for me but maybe I'm just a protagonist and question everything. All I wanted to better understand is if interferon affects your chances of getting pregnant and/or bring on early menopause. I find I'm always trying to find the answer myself! Very frustrating.
I am not aware of any link between Pegasys and premature menopause. You are correct to be skeptical about the response the hematologist gave you about 1,500. The risk of hemorrhage goes up when platelet levels are as high as your's are now. There is no absolute trigger at 1,500. Each patient's response is based on their individual MPN profile. What matters is how your body responds to the level of thrombocytosis you are experiencing.
It is worth noting that the higher the PLTs go, the higher the risk of developing Acquired von Willebrand Diseases (a bleeding disorder). AcqvWBD can and does occur at levels of PLT < 1,500.
If your hematologist is not helpful then replace that doctor. It is essential that you have an ongoing relationship with a hematologist with who you have confidence and a supportive relationship. Moreover, all people with MPNs should consult with a MPN Specialist. MPNs are rare disorders. Most doctors, including hematologists, have little experience with them. Optimal MPN care requires an MPN-expert provider. Here is a list of MPN expert doctors. mpnforum.com/tsr-the-list/
Definitely discuss with your haematology care team.
I wanted to offer you a glimmer of light…. I have ET and have been on pegasys for approx four years, I’m 41 and we embarked on IVF treatment when I was 40 and I am currently 28 weeks pregnant.
My haematology team have been with me on every step of my journey and are monitoring me closely throughout my pregancy, working in collaboration with my obstetric consultant.
In your late 30s, I get it that you feel your clock is ticking, I felt the same in my 30s. And my advice to you is to be open and honest with all of the medical professionals who are there to support you. They will find the right path for you. I may never have found my ET (or funky blood as I call it) had I not embarked on IVF. We entered into all of this with eyes wide open and (for me) Pegasys was decided to be the best treatment. But everyone is different. Don’t just stop meds without consultation with MPN specialists. Your platelets need to be under control (and body as healthy as can be) to give you the best chances of success in your IVF journey.
Firstly, super happy for you on your 28 weeks news!! Fingers crossed you and baby are safe.
Thank you for some sound advice. I did speak toy consultant and he was happy for me to come off and subsequently wasn't "too worried" about my numbers going up, which I know doesn't sit right for me. I think I will be going back onto interferon and will have to work closely with experts on what this means for my fertility journey. I haven't embarked on IVF mainly because I have a healthy beautiful 4 year old. If I didn't get pregnant it wouldn't be the end of the world - just want to give it a good try, before accepting our family of 3. I find this forum incredibly helpful. Thank you x
May I ask you how much platelets you had when diagnosed?
I was in the 900's
How much interferon you take? Medication plan?
I take 135mcg Interferon weekly
And how fast you could lower your platelets with interferon?
It took a long while! I started on 45mcg and this was quite quickly increased to 90mcg, then 180mcg. Only when I was on 180mcg did I fall to within normal ranges (this took approx 18 months)
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