Good day! Please write how you switched from ruxolitinib to momelotinib? Did you gradually reduce the dose of ruxolitinib?

[Marina1964]

Switching from Ruxolitinib to Momelotinib.

[ainslie]

I think you should get expert guidance and monitoring from a good MPN doc/expert on how to do this

[grandpa101 in reply to ainslie]

Hi Marina

I was taken off Rux and put straight onto Momelotinib unfortunately have had a bad reaction to Momo and am currently on just Hydroxy my spleen is enormous but have appointment on Thursday with haematology hoping for some resolution then

Best wishes to all

[Marina1964 in reply to grandpa101]

Thank you very much for your reply. It means a lot to me.

Best wishes.

[Gipsy123]

Hi. I asked my consultant exactly that question and was told can just stop the rux ( 15 mg twice a day) and start momelotinib (200mg a day). I did, and had no problems stopping the rux. Seems you can switch from rux to momelotinib ( and back) easily.

[Marina1964 in reply to Gipsy123]

Thank you very much for your reply. It is very important to me. I will be glad and grateful if you will share your experience of taking momelotinib.

Best wishes.

[Gipsy123 in reply to Marina1964]

think I might need to reduce the dose- I’m getting dizzy and have have urinary urgency. But my Hb is going up and I do have more energy. . As I have shared care with a local team its hard to sort out dosages. I switched back to rux for a while. But want to try reducing dose of Mom. Where are you based?

[Marina1964 in reply to Gipsy123]

I'm from Russia. My husband has post-polycythemia myelofibrosis. He has been taking ruxolitinib for ten years. But my husband's anemia and large spleen are growing. From 2013 to 2019, my husband and I went to a clinic in Germany every year for a consultation. Now we do not have this opportunity. We contacted our doctor in Germany by email and she advised us to switch to Momelotinib. Unfortunately, Momelotinib is not registered in Russia. Our relative bought Momelotinib in Germany and brought it to us. There is no such forum for patients with myeloproliferative diseases in Russia. That is why I registered on this forum. And your experience is very important to us.

[Gipsy123 in reply to Marina1964]

I’m glad to be of help.

[Marina1964 in reply to Gipsy123]

Good afternoon! Please write how you are feeling now while taking momelotinib.

[Gipsy123 in reply to Marina1964]

Higher Hb, more energy, but also dizziness abd fatigue. On balance, its worth it. Changing the dose to 100mg daily, from 200mg. on alternate days. I had a gastric bypass for ( very effective) weight loss many years ago, so my drug absorption is unusual.

[Marina1964 in reply to Gipsy123]

Thank you for your prompt reply. All the best to you!

[lizzziep]

I switched overnight, Rux one day, Momelotinib the next. No problems.

I haven’t had any side effect, so far! I was ok on the Rux but my anaemia was getting worse. Momelotinib has raised my hg but also my platelets so I’ve been prescribed hydroxy alongside it to get them down, hopefully I can be weaned off that.

[Marina1964 in reply to lizzziep]

Thank you very much for your reply and your time.

Best wishes.

[Marina1964 in reply to lizzziep]

Good afternoon! Please write how you are feeling now while taking momelotinib.

[lizzziep in reply to Marina1964]

Hi, I feel ok, my platelets went up when I cut the hydroxy to every other day, but went back down when I went back to every day, currently not taking the hydroxy on a Saturday, not had a test since I started doing that.

My haemoglobin stay’s just over 100, it used to be around 75. I feel well, occasionally a bit nauseous in a morning but I take Gaviscon for that. Unfortunately I have put weight on. I know most people with MF lose weight - I haven’t! Momelotinib does increase the appetite.

Hope you are ok.

[Marina1964 in reply to lizzziep]

Thank you for your prompt reply. All the best to you!

[Marina1964 in reply to lizzziep]

Thank you very much! Your experience is very valuable to us! Best

[Gipsy123 in reply to lizzziep]

Hi Lizzie: meant to ask if you were offered:tried EPO injections to help the anaemia.

[lizzziep in reply to Gipsy123]

Yes, I’ve been having them (self administered) twice a week for about 18 months. I presume they help keep the haemoglobin up, haven’t been off them to see if it drops!

[Gipsy123 in reply to lizzziep]

So despite the EPO injections twice s week your haemoglobin was low. I couldn’t cope with having to keep it refrigerated: it clipped my wings too much for travelling- even within UK. Hadn’t realised that missing the odd injection wouldn’t be the end of the world.

But I do have more energy on mom.

[lizzziep in reply to Gipsy123]

Yes,I feel better on it. Just been down to our sons in Dorset for a couple of weeks (260 miles) so had to take EPO with me, in a cool bag with a freezer pack. Then when we’d been there a couple of days they had a 12 hour power cut, so just had to hope their fridge stayed cool enough that it didn’t deteriorate. I expect I’ll find out after my next test in a couple of weeks. I really don’t know if it does anything. It’s a nuisance to keep injecting and store.

[Cazbolac]

Hi. I was on Rux for 9 years and then had to change to Mom about 8 months ago. My Rux was reduced down to half my dose and then moved onto Mom. I had sickness at first so took anti sickness pills with the Mom. It is now tolerated without sickness. My bloods are not too good now though as not working as well due to progression of my MF. I am at high risk of moving from MF to leukaemia. I have decision to make now about Stem cell transplant.I wish you well with Mom.

[Gipsy123 in reply to Cazbolac]

I’m so sorry you have to think about a stem cell transplant: I’ve no experience of that, but there are others on this group who have been there. I hope it goes as well as it can.