ET is back after years in remission.

[CommonDaisy]

Hello!

I have just joined this forum because reading your experiences and seeing your support for each other has kept my anxiety at bay these past few weeks.

I just wanted to share my story and see if anyone out there has had a similar experience.

I was diagnosed with ET when I was just 13 (15 years ago) with a platelet count over 3000. I was told at the time that the high count and my age for having this condition was very rare. I was always quite unwell as a child and it wasn't until I was diagnosed and started on Hydrea (6x 500mg tablets a day to begin with) that I started to feel better! After getting used to the medication, I had so much more energy than I used to.

I have the best Haematologist- he saved not only my life but my little sister too (who had Leukemia 7 years ago)

Over the years on Hydrea, my platelet count slowly come down to a level where I was only taking about 1000mg a week. Life was busy and sometimes I'd forget I even had ET and would forget to take my meds. My haematologist knew all of this and because my platelets looked like they had stabilised themselves in the normal range with almost no medication, we decided to trial not taking it all together!

That was about 5 years ago. I still had blood tests done every few months to keep an eye on it and make sure it wasn't creeping up. But it remained in the normal range for years- as you can imagine my doctors, myself and my family were ecstatic!

Fast forward to 3 weeks ago and my husband and I have our honeymoon booked for half way across the world next month and are talking about starting a family.

So I go to have a 'pre pregnancy' blood test done- just to check if I'm healthy etc.

Tests all perfect except my platelets have out of the blue jumped up to 1200!!

At first I was in denial.. blaming a virus or my new multivitamins. But my BMB has confirmed the ET is back Worst timing.

I feel like I'm starting to accept it again and pulling myself together.. the trip and the babies may just have to be postponed for now.

I'm currently on daily aspirin and starting back on Hydrea very soon ( as this worked well for me last time)

My question for you guys is.. has anyone else had a 'break' from ET?

And I'd love to hear from any mothers that had ET whilst pregnant.. I couldn't find a lot about ET and pregnancy out there

xx

[Mazcd Partner MPNVoice]

Hello welcome to our forum, what a shock this has been for you and your family, and as you say, not good timing. We have some very good advice on our website about pregnancy and MPNs which I hope will help you

mpnvoice.org.uk/living-with...

one very important factor is that if you are hoping to get pregnant then you shouldn't be on Hydroxycarbamide, you will have to be prescribed something different, so you need to talk to your haematologist about this before you start any medication.

If you would like to be put in touch with some other ladies who have ET and have had very successful pregnancies please email me at [e-mail] and I can put you in touch.

Best wishes, Maz

[CommonDaisy in reply to Mazcd]

Thank you very much for your reply Maz. I have had a good read through the page you linked and makes me feel more at ease.

My haemotoligist is aware we’d like to start a family in the near future. I will be seeing him again in a couple of weeks so we’ll hopefully discuss other treatments then he mentioned there are other options when the time comes.

Thank you! I will shoot you an email now x

[AmandaS]

I've had a similar history to you. Had diagnosis in my early 20s and stable on Hydrea for 30 years until platelet count kept dropping even when Hydrea reduced. Then told it was a misdiagnosis and I was fine, go away. Continued like that in remission for 7 or 8 years and then pruritus started again and JAK2 ET confirmed. I have had 2 children, both while I had ET. That was in the early days though before I started on Hydrea (they gave P-32, radioactive phosphorus back in the day). So do talk to your Dr before trying to get pregnant but you should hear from many on the list who have successfully had children. Good luck!

[CommonDaisy in reply to AmandaS]

Thanks for your reply Amanda. ET is such a mysterious thing how it can come and go. It’s nice you got a break from medication for 9 years.

So good to hear of your successful pregnancies and that there are many others out there who’ve had children

[DH65]

It could be stress as you have a lot going on! During the wildfires in CA my platelets were very high but have come back down. My ET was in remission then I moved across the country and they climbed again. When I was super busy at Christmas they also climbed. These are just examples that stress can cause them to climb. Good Luck , try not to worry and meditate to lower those stress levels.

[CommonDaisy in reply to DH65]

Thanks for the reply! I am a huge stress head and I’d like to think it was just from stress too as I believe it definitely does have an effect. But it climbed from about 400 to 1200 in just a couple of months.

Can you remember how much your platelets jumped up when you were stressed?

[DH65]

Well I remember at Christmas they were moderately high like 500 then went to 1000

[DH65]

I bet they come down but could take a few months, don’t worry, enjoy the honeymoon, hope you are still going

Let us know what happy

[DH65]

Happens

[CommonDaisy in reply to DH65]

Oh wow, that was quite a jump then from stress. So glad to hear they came back down on their own for you.

I won’t be able to fly for our trip if the platelets remain this high that’s why Haem wants me back on HU before we go. Fingers crossed we can still go!!

Yes I will keep you posted.

Thanks again for shedding some light!

[somel]

hi,

I was recently diagnosed with ET, few days ago, I found the forum by coincidence and I was too happy to find people with same condition

I am 21 years old , with platelet count above 1200, when I fist discovered it it was 969, so I went to 2 specialists one prescribed hydroxyurea and the other prescribed anagrelide, I was afraid of the hydroxyurea so I decided to take anagrelide and see what happens

I thought I can benefit from ur experience And ur advice, I feel tired most of the time and can't concentrate and I don't know if this have any relation to ET, tell me if u had smiliar symptoms and how can I deal with it from now on, cause I feel too confused, Iam still waiting for the BMB results

I will appreciate ur cooperation and your advice

Yours,

Salma

[CommonDaisy in reply to somel]

Hi Salma,

It’s comforting to find there are many of us in our 20s or younger with ET.

It’s a blurred line whether the fatigue and lack of concerntration is from the condition, the meds or from stress/anxiety.

If your symptoms began after starting your medication, I would discuss with your doctor, I don’t know much about Anagrelide.

I felt at my worst when I was diagnosed (the second time) because I was so incredibly stressed and anxious. I could barely walk around the house and my head felt so scattered!

I was thinking it was all symptoms of ET but I honestly think my poor body was just trying to cope with the stress.

I’ve been back on Hydroxy (1000mg daily) for 10 days now and I feel so much better. No symptoms that I’ve noticed. Maybe a bit more tired at the end of the day. But I feel more relaxed and can do all my normal day to day activities again

I also bought some essential oils for stress and a diffuser- I feel this helps a lot with anxiety and foggy head!

[CommonDaisy in reply to CommonDaisy]

I should also mention, I will be seeing my Heamotologist in a couple of days to discuss different medications with starting a family in mind

So I may be coming off the Hydroxy soonish