Momelotinib ~ tips or hints?

[Sunshine_Lover]

I Have Post Essential Thrombocythemia Cal-R Positive Myelofibrosis. I have been on Ruxolitinib since 2016, but have now become resistant. I am due to start Momelotinib shortly. I know it is pretty new, does anyone have a similar experience? Any tips? I have missed orange marmalade for 8 years, I'd love to be able to have it again!

[Bullace]

Hello. Sorry I can't help with experience of momelotinib, as I am on fedratinib at the moment but am about to transfer to momelotinib. I would also be interested in anyone's experience of this drug. All good wishes to you. Hope it works well for you.

[Bullace]

Also, why no marmalade? I didn't know there was an issue with it!

[Sunshine_Lover in reply to Bullace]

Hi, for some reason when you take Ruxolitinib, both Grapefruit and specifically Sevilla Oranges are banned substances! What I don't understand is why Limes and Lemons are okay? As I was never told otherwise, so I have always had the these.

[DJK12 in reply to Bullace]

It is to do with the time taken for the body, probably more accurately the liver, to process the drug. It can affect blood levels and increase chances of side effects. Three drugs I take advise avoiding them. Ruxolitinib, Simvastatin and a blood thinnerApixaban. I've a feeling also when I was on Anagrelide the leaflet said not to take it with grapefruit juice.

[Bullace in reply to DJK12]

Thanks for this info. I knew about avoiding grapefruit but not about Seville oranges and marmalade. I do love marmalade!

[Wychwoodbabe]

Hi

I am exactly the same as you! ET since I was 32. Then progressed to MF and been on Rux since it was approved years ago but suffering from anaemia now so hopefully going onto Momelotinib in the next month or so. I am 73. We must keep in touch and compare.

[Sunshine_Lover in reply to Wychwoodbabe]

Hi, thanks for your message. Yes we will.. I was 50 when my ET was picked up in 2013. We moved from Somerset to Hampshire, and my new Haematologist diagnosed MF (which explained why I had lost so much weight over 16kg), thankfully very early, and I was straight onto 40mg Ruxolitinib, 2 weeks before our health authority pulled funding for early stage. I have always had bad anaemia, and was needing regular blood transfusions, a couple of years ago, my dosage was dropped, and my anaemia was never as bad, and didn't need transfusions. It all started going wrong just before Christmas, and the MF symptoms started returning. I am hoping that the move to Momelotinib will be a stop gap, as I want to have a stem cell transplant, if my nuclear medicine kidney function tests, say I can! 🤞🤞🤞🤞

[Wychwoodbabe in reply to Sunshine_Lover]

Hi

I started on Momelotinib just over two weeks ago after my return from holiday. I was on 40mg Rux and put straight over to 200 mg Mom.

A few side effects. Cystitis, tummy problems, eye problems and general feeling of fever and total fatigue and dizziness. I saw my consultant last Friday and my kidney function has been affected so told to stop Mom immediately and go back to Rux plus Darbo jabs.

Now on antibiotics for the kidney infection. Its a learning curve but I will give my body a bit of a break and go back on it as my haemoglobin is low and I don't want to become transfusion dependent.

I will let you know what happens when I try it again!

😀🤞

[Sunshine_Lover in reply to Wychwoodbabe]

Hello,

I have been thinking a lot about how you are getting on and to see if you had started Mom. I am sorry to hear of your issues.. I hope you get sorted out, and that your kidneys get better. I wish you all the very best.

My Haematologist has also prescribed me an anti-viral called ACICLOVIR, as you'll need this type of medication with it! Have you had an anti-viral as well?

I have been on Mom for a month now, it has been a bumpy ride for me too. Low blood pressure to start with, but the nausea and stomach pains have been bad, but I have metoclopramide to help with that, and I've just started to get a bit of mild itching now. Fatigue and dizziness are just a fact of life...

Once your kidneys are better hopefully you'll be okay to go back on it.

In 2020 I had Pneumonia, sepsis and an AKI, after 6 days in ICU on a CPAP machine, I manged to walk out alive, but the AKI severely damaged my kidneys, to the equivalent of CKD stage 3B.

My GFRe is usually around 35-37, so I had to have an actual GFR test at the nuclear medicine facility at UCLH to determine if they would survive the chemo for a stem cell transplant, and they should.

When I started on Ruxo, it was at the 40mg dose, and I soon became transfusion dependant, then after covid, I had a new haematologist, (MF is their research subject), and said that my dose was to high, so I had a further 3 years or so at 30mg, and no more transfusions! My Hb is currently around 100.

It was after 7½ years that I became resistant to Ruxo, and I was the second person at my hospital to have been prescribed Mom.

🩷🩷🩷🩷

[Wychwoodbabe in reply to Sunshine_Lover]

hi again

You poor thing. You have been through the mill!!!

Yes I have had many medications on this 41 year old journey of blood disorders but this transition from drug to drug has been the worst so far. But then I am older now!

On anti virals as well as thyroxine,aspirin blood pressure and cholesterol meds.

Am off Mom now for a bit but the itching had started. So interested you have it to! Not had itching like this for years.

Good luck on your Mom journey and with your kidneys and SCT.

Please keep in touch as I will with you.

Kind regards xxxx

[Sunshine_Lover in reply to Wychwoodbabe]

Hi,

I was wondering how you are doing? Have things improved for you? Are you back on Mom? I hope you are well?

I certainly agree that the transition from Ruxolitinib has been tough, and not an easy ride. It has been over three months for me now, and does appear to have stabilised a bit.

I now have my SCT booked for early December, so 🤞🤞 it is not too horrific!

My Kidneys passed two Nuclear Medicine GFR tests just!

Best Wishes 💜💜💜

[Bullace]

I'll keep my fingers crossed for you!🤞🤞🤞

[Sodabread]

Hi have been on Momelotinib for quite a while as Rux stopped working for me. It has helped to reduce my spleen a little. I did feel queasy and out of sorts for a while until my body got used to it but now no problems with it . Feel very fortunate to be on it. Hope it helps for you - we are all different in the way drugs react with us. Take care

[Bullace in reply to Sodabread]

Thanks so much for your positive post. I am also hoping for spleen reduction on momelotinib. All good wishes to you