Starting meds & worried

[DoubleF79]

Hi all. Had phone call with doc yesterday & platelets are now over the 1500 mark (1569) so I need to start medication. I’m only 41 with 2 young kids so I’m feeling very emotional. I’ve got the CAL-R mutation. Interferon by injection is looking most likely but I’m waiting for face to face appointment to decide & to sign consent form. Any advice would be greatly appreciated x

[Hidden]

Hi DoubleF79 Please May I introduce myself, my name is Marilyn and I’m part of the MPN Voice team. I’ve had ET for 11 years and I’m on Hydroxycarbamide and Asprin. It is totally understandable for you to feel emotional, we have all been there. It is such a huge and sometimes scary thing to get our heads around. I know the MPN Voice community will be there to support you every step of the way. If you need more information about Interferon and other treatments, please go to our website at mpnvoice.org.uk The website is being upgraded over this weekend, so if you have any difficulties, please check the next day.

We have lots of information about Interferon, so some of your questions and concerns hopefully will be addressed.

We also offer a buddy system if you feel you’d like some support. We are always here to help you.

Keep well and safe.

[ggrana]

Hello, my situation was pretty similar to you so please don’t worry you’ll be ok. I was diagnosed at age 42 as well and I’m 50 now. My platelets were 1.7 million now down in the 600’s by taking hrdrox 1500 mg a day . I go for monthly bloodwork and keep on top of it. Take care and seek a specialist in MPs if possible . GraceNJ

[DoubleF79 in reply to ggrana]

Thank you Grace, I’m feeling reassured x

[Otterfield]

I started medication for ET aged 39, first Anagrelide, then Hydroxycarbamide, then Peginterferon. I never suffered from serious side effects and injecting with Peginterferon was much easier than I expected. I am now 59 and have progressed to MF so I am on Ruxolitinib and still doing fine. All these drugs have been fully tested and you may not get any side effects. Good luck, Jennie

[DoubleF79 in reply to Otterfield]

Thank you, I appreciate you all taking the time to reply x

[wiskie]

Hi, DoubleF79, I've had ET for 11years. I'm now on Peg/Interferon 135mg weekly, prior to this I've been on Hydroxy carbamide & Anagrelide. I was very emotional & frightened when first diagnosed with ET, it's understandable & although I've had some very worrying situations with platelets rising, it does get easier. I have found MPN voice so supportive & have found it's best to speak to people in the same situation. Good luck !!

[DoubleF79 in reply to wiskie]

Thank you for the advice. I really appreciate it x

[Wyebird]

Welcome. I’m also ET CALR. Yep life sucks at times. All I can say is that out of all the MPN’s ET CALR seems to be the best of a bad lot. Good luck with the injections I’m on hydroxi. I’m sure once your platelets start to drop you will feel better.

[DoubleF79 in reply to Wyebird]

Thanks. The thing is I feel absolutely fine, no symptoms other than a bit of tiredness. Maybe that’s why is so hard to get my head around...XX

[Mostew in reply to DoubleF79]

I can imagine how you are feeling

I have JAK 2 pos. platelets not yet reached the point when I will take meds , apart from aspirin. even though to high .

It’s so weird feeling ok and yet getting diagnosed with a serious condition . As you say

I know this forum is a great support and comfort to know we all feel there is someone to chat to who understands

[Wyebird in reply to DoubleF79]

Yes you feel fine and no doubt the tiredness could well continue because although your platelets will drop the side effects of meds might well leave you tired. The most important thing is to diminish the possibility of have a stroke. - it plays havoc with your holiday insurance premiums 😀.Maybe once your platelets are normal your meds will be reduced drastically. Now smile- you are being monitored. There are so many other devastating illnesses out there. Hug your kids you are going nowhere. Have a fab Christmas xx

[DoubleF79 in reply to Wyebird]

Wise words which brought a tear to my eye. Lots to be grateful for indeed x

[Joetcalr in reply to DoubleF79]

Same here, no symptoms at diagnosis ET Calr and a count of 1600 +, and I just felt I had to trust what the docs were saying, and at same time put only good things in my body - so I gave up sugar, (and the capitalist nonsense that goes with all that processed junk!). Good luck

[hunter5582]

Based on what you describe, PEGylated Interferon would be a good choice for treatment. The newest form Ropeginterferon (Besremi) appears to better tolerated/have fewer side effects. It will be my first choice when I need to go back on meds. At age 41, this is what most docs would recommend.

Totally understandable to be nervous about this. You will hear from plenty on the forum who have great success with PEG-IFN. Wishing you the same.

[Tmg59]

Hi DoubleF79. I was diagnosed with PV jak2+ 4 years ago just by having a routine blood test. I was 60 last year so consultant wanted me to start treatment. Like you I found it hard to accept starting treatment as I felt absolutely fine and was petrified about starting any treatment. However I started Peginterferon about 3 months ago and it has been fine with no side effects at moment. I was advised to inject evening, but my first 2 injections were administered in hospital setting in the mornings and to be honest I felt fine. So I have continued injecting in the morning. I take paracetamol half hour before and then keep my self busy throughout the day and all seems good. My platelets were 620-700 but have come down to 438 and my haematocrit was 42-48 and had come down to 40 so fingers crossed 🤞. I started on 45 dose once weekly and now 45/90 alternate weeks. I know we all react differently but good luck with the next part of your journey and let us know how you are getting on. Everyone on here really helped me when I was feeling so anxious.

Take care

Tina

[DoubleF79 in reply to Tmg59]

Thank you Tina. I’m seeing the doc on Thursday so just want to get it done & crack on with treatment. I train 4/5 days at the gym so that keeps me sane. Merry Christmas to you x