Coincidence or not?

[beckyluck]

After some female advice please.

I am 45 and would like to know if anyone has experienced the same as me please.

Diagnosed ET May 2017, started on Hydroxycabamide June 2018 and switched to Interferon in May this year. Whilst I was taking Hydroxy I had no periods for around 4 years, since coming off it and starting Interferon my periods have come back with a vengeance! My consultant is not sure if it is related as she said most of her patients taking Hydroxy are of an age where they no longer have periods. Has this happened to anyone else? Thanks in advance x

[hunter5582]

Some women on the forum have reported similar issues. Hopefully they can weigh in on their experiences.

There is this information from the Dana Farber cancer Institute.

For women, your period (menstrual cycle) may not be regular for a while or may stop completely and you may not be able to get pregnant. dana-farber.org/uploadedFil...

Suggest you review this issue with a doctor who is knowledgeable about the potential impact of HU. Perhaps a MPN Specialist who has experience managing younger patients who have taken HU.

This would be an excellent topic for patient education. Perhaps we can all learn more.

[beckyluck in reply to hunter5582]

Thank you for your reply hunter5582, I will take a look at the link you have posted and hopefully it will give me some more information. I will also speak to my consultant and see if there are any other consultants in her team working with younger patients. Thanks again it’s appreciated 😊

[KLCTJC]

I am on Besremi and in May mine went crazy! I really have been spotting ever since! I did go to OBGYN and she recommended an IUD. Others on this site have an IUD so I went for it. It has slowed it down, but now I have what I expect is normal spotting with an IUD. Nothing heavy with times of nothing for 7-10 days. I am going to give it the full 6mos since that can be normal for an IUD. I also found out that I am severe hypothyroid. Still working on getting that down and that can affect it too. My TSH was always high, like 5, but on Besremi it shot up to 37. Luckily last time I had it checked it is down to 15. Doubled the medication and hoping that will get it down to a normal level. I know how you feel, Besremi said it can cause issues including not having a period! I never get the no period side effect!!! I did have an ultrasound just in case and it was ok, had a tiny fibroid. I think this IUD will work for me. Just trying to be patient.😳 I hope this helps!

[beckyluck in reply to KLCTJC]

Thank you for your reply, I already have the Mirena coil so not sure what else to do, my consultant said she was going to speak to one of the Gynae consultants to see if they had any suggestions, so I suppose will have to wait and see. Hope the IUD works for you 🤞🏻

[Vtr1000]

Hi beckyluck, similar scenario as you. Mpn specialist told me to speak with my GP, I now take Desogestrel.😄

[beckyluck]

Hi Vtr1000, thanks for your reply, I’ll mention that to my consultant when I go in a few weeks, she was going to speak to the Gynae consultant at the hospital so hopefully they will have a suggestion. Has taking that medication stopped your periods or calmed them? Hope you don’t mind me asking x

[K-itty in reply to beckyluck]

I had already gone through menopause when I started on Hydroxyurea, so no lapses in periods, but I will share that among other side effects that my body didn't like being on that drug, one was an atrophy of the entire female area. Something I've had to contend with even after quitting the drug. I will say that I'm not 100% certain that Hydroxyurea was to blame or a series of unfortunate effects due to the drug and my age, but I certainly feel, Hydroxyurea contributed to this greatly and sped up the process.