Changing to Momelitinib

[lizzziep]

I had a phone consultation with Guys this afternoon. For the first time they asked for blood tests before the appointment. This was arranged locally by my specialist nurse, the results to be emailed to Guys. I had to phone three times over 4 days before the results were emailed through, usual nurse had gone on holiday and the other nurse isn’t what you’d call reliable!

Anyway had a good conversation with the doctor, we discussed trials but as I live in Yorkshire and would need to visit Guys a couple of times a week that was put aside for now, especially as I might not have been able to claim the train fares back. (UK residents will know the rail fares here are extortionate and the service extremely unreliable!)

The doctor has recommended changing from Rux to Momelitinib, as I have been very anaemic for a long time. She did infer my anaemia should have been more of a concern before now. My haemoglobin is often below 80, and is currently 76. Hopefully the Momelitinib will help raise my blood counts fairly quickly. She did warn me about side effects, nausea, dizziness etc.

She was emailing my local haematologist to ask him to prescribe it asap! I’ve got an appointment with him later this week. She said to change over to it as soon as I get it. I’ll update how I get on with it.

[Spanelmad]

Let's hope the change over goes smoothly and no side effects!!Did you expect a change of meds or did this come as a suprise.

[lizzziep in reply to Spanelmad]

My local haematologist has mentioned it in the past, but didn’t want to change anything. I’m hoping I respond well to it, I haven’t had a problem with Rux except weight gain 😱

[Spanelmad in reply to lizzziep]

Let's hope the weight starts to come off with the new meds!! Goodluck, I'm still only on blood thinners as guys are still processing the biopsy, rux was mentioned as poss next step.

[Joetcalr]

thanks for that info. Your haemoglobin sounds extremely low to me. I was like a snail when mine was down tho not as low as that and they eventually gave me EPO which really revved me up again, have they offered you that to help?

[lizzziep in reply to Joetcalr]

I think I’ve got used to being tired all the time! One of those situations where you didn’t know how bad you felt until you felt better! It wasn’t until I was really thinking about it last night I realised how much I’ve slowed down. Hopefully will be feeling more energetic soon.

[Hidden in reply to lizzziep]

Keeping fingers crossed for you. I feel you about the slowing down and fatigue ((PV diagnosis in my case and on Rux)

[jointpain]

I've probably asked before, but my memory isn't too good these days. How good are your iron stores? I ask because my wife's are never very high, but very very low, as she seems to have a chronic GI bleed, which has never been found. When she isn't very anemic due to not bleeding and has recently had a ferinject, she can get into the normal range and has been as high as 118 Hgb. If you aren't bleeding and having blood transfusions your iron stores maybe high, if not, momelotinib might not help the anemia, if you don't have the right building blocks to build red cells. I hope you understand me.

[lizzziep in reply to jointpain]

I’ve had all the checks for bleeding, cameras where the sun doesn’t shine etc.

I also have EPO injections twice a week, as far as I know my iron stores are ok. However that is something to keep in mind. Hope your wife is doing well at the moment.

[hunter5582]

That sounds like a good plan.

Wishing you success moving forward.

[Lyndjs]

I'll be thinking of you lizzziep hope all goes well with your meds changeover 🤞 I'm sure it gives you confidence knowing this was under the supervision of Guys.

Take care and keep us posted. I hope you're energy increases and you can get out to enjoy the end of summer xx

[ainslie]

wishing you good luck with the new meds, Hgb at 76 is very low so you may feel good benefits of a higher Hgb 🤞

[Inca]

Hi Lizziep I usually read your posts,didn’t realise you were a Yorkshire girl ! I am ,born & bred North Yorkshire!Still miss Yorkshire tho lived in S W France for years.I hope your change of meds works for you,like you I am continually tired & irritable too cos I cannot live my life as I used to.I managed P V for a long time but M F has been a struggle.Wishing you all the very best.Sally 🥰

[katiewalsh]

Good luck with the Change, let us know how you feel on the new medication.

[lizzziep in reply to katiewalsh]

Thank you! I will update.

[mhos61]

Good luck with the change of medication.

I know what you mean about train fares. I was just looking to book for London in September, it seems like they’ve doubled, unless I’ve picked a bad week…

[lizzziep in reply to mhos61]

There’s an app called Seat Frog that you can upgrade to first class cheaply 24 hours before your trip and also get cheaper seats, it’s a bit hit and miss getting the day/time you want but worth checking out. My son lives in Dorset, it was cheaper for them to fly to Amsterdam for a concert than go on the train to the London one!

[MCW22]

I was born in Yorkshire too but my family moved away when I was a child. I am in Norfolk now. Wishing you all the best.

Carol

[lizzziep in reply to MCW22]

Thank you ☺️