One week in ….

[lizzziep]

I’ve been on Momelotinib for one week now and so far so good!

Got to say the pharmacist who phoned me terrified me with all the side effects and possibilities of what could happen, she really put me off, however, I decided to take the plunge.

I’ve been taking it after my evening meal. I’ve had a bit of nausea but Gaviscon has kept that under control, otherwise ok! I felt a bit off the first day but ok now, I don’t feel any worse or better than before I started it. Hopefully it will do its job and I won’t be as anaemic. I go back to see the haematologist on the 12th.

I was told I couldn’t take anything with paracetamol in it, but I asked the team at Guys if I could take my usual cocodamol for my arthritis pain and they said that was fine.

Fingers crossed I won’t have anything adverse to add to this.

Thank you for support and good wishes. 😁

[Lyndjs]

Good to hear you're feeling OK and you've found something to help with the nausea. I've recently spoken to an aromatherapist and she recommends to smell lemon for nausea. I'm going to give it a try 🙂

Hope all goes well with your arthritis too 🤞

Keep us posted xx

[lizzziep in reply to Lyndjs]

I’ve not heard of that before, definitely worth a try.

[Cja1956]

Thanks for the update. My doctor keeps bringing it up but I still feel good on Jakafi and I’m not ready to change.

[lizzziep in reply to Cja1956]

Guys suggested it because I’m so anaemic even with EPO injections, so fingers crossed it raises my haemoglobin.

[Cja1956 in reply to lizzziep]

I also get EPO injections so my hemoglobin has stayed in the nines for a long time. My Platelets, which had dropped a lot last year are now increasing again and are above normal.

I really hope the new medication works for you.

[Spanelmad]

Stabilizers are on then wobble over!!! Glad you took the plunge.I've been wondering what you would do.Thank God Guys agreed to your pain meds or you may have not tried.

So how often do you take it? I'm assuming blood tests fornightly?

[lizzziep in reply to Spanelmad]

One a day, in the evening, there will be 3 weeks between the before and after blood tests. So hopefully there will be some improvement in haemoglobin, it was about 75 on the last test.

[Hopetohelp]

well done you!

[ainslie]

that’s fantastic news , I hope it continues to go well 👍

[lizzziep]

Thank you 😊

[katiewalsh]

congratulations on the new medication. It must be so reassuring to have Guys overseeing your care. Happy for you. Let us know how you do. Katie

[lizzziep in reply to katiewalsh]

Thank you, so far so good!

[Inca]

Great news Lizziep.Good Luck !

[lizzziep in reply to Inca]

Thank you 😊

[Inca in reply to lizzziep]

I have more probs to face tomorrow,so it’s good to know someone else gets thru the awful things we go thru.Well done to you & very best all stays good.Sally

[lizzziep in reply to Inca]

Thank you. Hope all goes well for you.

[Janll]

I’m cheering you on. I am just about one week ahead of you and feeling the same. Do let us know when you have your first blood test after starting Mom. I have blood test every two weeks and after the first, my haemoglobin went up 10 points . I am thrilled!

[LucyAshtonGeering]

Happy to read this, thanks for keeping us posted. I’m excited about Momelotinib as another option for us, I hope it continues to be good to you ☺️

[lizzziep in reply to LucyAshtonGeering]

Thank you 😊