I’ve been prescribed Momelitinib today, as expected. I had to sign I’d been informed of all the possible side effects. I was, in a way, looking forward to taking it, however, one of the cancer pharmacists has just phoned me and gone further into the side effects, which has quite put me off!
She said I couldn’t take pain relief for my severe arthritis as no paracetamol or anti inflammatory like ibuprofen but as I take aspirin I don’t take that anyway. I have also been prescribed anti sickness and anti diahorrea tablets. Neither can I take blood pressure tablets. I was informed of lots of side effects for the Rux but not as many as this! I’ve got to phone for help if I feel ill or have heart problems - the list goes on. I only got weight gain from the Rux.
I thought I’d take the tablet at night to try and alleviate any dizziness or nausea, but now I’m not sure I even want to start it.
Is anyone else on this and have they had any problems? Yes I know we’re all different.
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lizzziep
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Sorry to hear about the restrictions to having BP meds etc. I was trying to get my wife onto Momelotinib a few months ago, but because her anemia was patently due to blood loss, proof of which is reducing iron (ferritin) stores. If it wasn't due to bleeding her transfusions would cause her ferritin stores to be high. She is to start on Ruxolitinib in four weeks. I take it your ferritin reserves are very good, I remember asking in your previous post. Which makes one think that your bone marrow isn't making enough red cells even though you're on EPO. If Momelotinib works, it really is a wonder drug, hope it does and you do get much in the way of bad side effects.
Ok that's a lot ,but we all know that not all of us will get the side effects.Your plan to take at night is a good one and definitely take the nausea meds.
Your having a wobble ,have you got someone at home with you who can stay the night so your supported if you get symptoms.As someone who was allergic to HU this would have been helpful for me.
Or wait and get more advice from Guys tomorrow they maybe able to put your mind at rest remember the drug is prescribed because it works!!And this community is there for you.
Thank you, yes my husband is here at home with me, don’t know what I’d do without him! I’m going to phone and see what I can take for my arthritis pain.
No wonder you are worried. Go with your gut instinct. I'm sure you will find tomorrow s appointment helpful Maybe write down some things you want to discuss. As easy to forget
Yes, it does sound scary. My hematologist has mentioned that pill to me a few times but I’m doing OK on jakafi so I don’t wanna try anything new right now. If Jakafi is not working for you, you really don’t have a choice because we don’t have that many drugs that can help us. I wish you well and hope you don’t have too many side effects. Good luck!
I have been on the new drug for one week. I decided to take it at night and that suits me. I tried to take it two weeks ago and took it in the morning but I felt awful so I decided to wait two weeks and try again. We had a family funeral coming up and I didn’t want to feel bad. I didn’t want the focus to be on me. I didn’t know I couldn’t take paracetamol. What happens when I do? I wasn’t warned about that. I feel more tired in the day but every day, less so. I see my consultant on Friday so I can ask more questions then.
Apparently paracetamol can mask the fact you’ve got a fever, I’ve had to take my arthritis pain medication as it’s agony without it,not that good with it but just slightly less painful. I’ve been taking it at night and ok - so far, but only had 4 up to now.
I can see how paracetamol can mask a fever but I can always check before I take it, to be safe. Each day now I feel more normal with this new drug. I’m excited to know if it is helping me.
lizziep, I saw my consultant yesterday and everything is going the way it should. My platelets which are low …. Didn’t drop lower. My red cells improved by 10. My consultant isn’t worried about me using paracetamol 3 times a day. I am feeling on top of the world. This is working for me. I hope you find it working for you too.
That’s good! I contacted Guys and they said it was fine for me to take my usual pain medication, cocodamol. I’ve had a week on Momelotinib now and so far so good. I’ll find out if it’s raising my haemoglobin in a couple of weeks.
I was so surprised mine changed from 95 to 105 in just 10 days. Do you have trouble just getting through the day? I was so excited about my results yesterday that I wore myself out and today has been a struggle. My only possible side effect is fatigue . I hope you do really well!
I would double check the interactions and cautions that you were told about by the pharmacist. You want to be sure to understand exactly what the issues are.
I did a quick look and found this. "Avoid taking medications that contain aspirin, acetaminophen, ibuprofen, naproxen, or ketoprofen unless instructed by your care team. These medications may hide a fever." chemocare.com/druginfo/mome....
Taking paracetamol (acetaminophen) is a decision you would need to consult your care team about. I expect it is the same with the other drugs listed.
Momelotinib is a new medication for everyone. There is a lot for everyone in the MPN community to learn. Please let us know what you learn. We can all benefit from your knowledge.
There are so many natural alternatives that work really well that don’t affect your medication. An anti inflammatory diet is also really important. The conventional doctors are not trained in this.
It is good to have an alternative doctor: a functional or ortho molecular doctor to find which natural meds you could take. Someone who will adjust you to be able to handle the symptoms of the chemical medications. There is Curcuma for arthritis, etc. so many different things to health the gut and keep it healthy, like l-glutamine. Diarrhea is a very serious problem and it has to be addressed at the root not just taking medication’s to the stop it.
Lots to think about in your case. Hope to have helped. Anag
Curcumin and turmeric may cause stomach upset therefore it’s best taken with food. Perhaps you can try that. If the liver values are not good, better stay away from curcumin. 🙂
I posted on this forum a few weeks ago that me doctor is considering switching me to this. I wish I had the studies he is referring to so that I could cite them for you, but he says it is proving to be more effective than Jakafi. I am doing okay on Jakafi but despite lots of exercise and diet, I am still gaining. And this is just anecdotal of course, but he has four other patients on momelitinib and they are experiencing no side effects. I also read the list and was concerned, but as someone has already mentioned, they have to list all this stuff. Please let us know how it goes!
I am taking Momelotinib and now ok with it. I was on it for 2 weeks ..... diarrhoea and had infection so stopped for 2 weeks (I have serious Bronchiectasis,so always have to watch this). Now been on for almost 2 weeks and so far so good.I have blood test next week and I'll be able to see if HB is staying up.. After trying at night the first 2 weeks I now take after breakfast.Every one is different.Stick with it but you know your team are at hand.
I take paracetamol every night. Thanks for bringing up about aspirin which I take.... I'll ask.
Thank you. Did you find a difference between taking at night and in the morning? I’m about to email Guys for further advice about what I can take for my arthritis pain.
Yes I was taking X jays for reducing iron first thing in the morning.Then I nebulise with saline then breakfast....I now take the monelotinib after breakfast and it's ok. My ferritin has at last dropped to a reasonable level so I am off it for the time being. I asked a doctor this morning about paracetamol and he said it's ok to take. He said they will monitor platelets and if they go too low they will stop the aspirin.
I am also interested in this conversation because momelitinib has been mentioned to me as my next line of treatment. Rux may be losing it's effectiveness (itch starting to creep in) and bloods never did get within normal range). Will know more when I have BMB in October. Things also complicated by heart failure concerns. I understand the concerns with this new drug and feel for you because obviously you have more than one issue to deal with, and pain management is so important. Hope things go well for you.
Will follow your story closely. Sorry, it does sound a bit like you're the guinea pig. Good luck.
it’s interesting what you say about your hospital advising you of all the POSSIBLE sides for Mom and previously Rux, when I was given Rux seven years ago I was just given the boxes and told nothing, so in a way it’s good your hospital is being so thorough. Maybe just especially thorough with Mom because it’s a newer drug. They probably have to mention every POSSIBLE side effect but that doesn’t mean it’s going to happen, a bit like reading the leaflet that comes with any meds, even the aspirin possible sides are a bit scary if you read the pack insertion.
We are all apprehensive about changing meds but if it doesn’t suit you you can always stop (after chat with doc) , I’ve heard of SOME people getting some nausea on it but that’s all I hear on the forums. As with many meds any sides can (but not always) get better with time.
Your double checking any interactions and that’s a wise move.
Good luck to you Lizziep! I do hope it's ok for you. I may be starting Momelotinib in the near future too and will let you know how I get on. I am on fedratinib at the moment and that made me feel sick in the mornings. Everything improved when the dose was dropped a bit and I'm feeling pretty good on it now. I started taking it at night and that did help. Unfortunately fed. isn't shrinking my huge spleen, so here's hoping momelotinib might do so. Also it might prevent me having to have 6 weekly transfusions - also a plus. Momelotinib seems to be the only other line of treatment available, so I'm grateful it has come along just now. Anyway all the best to you. Hilary
I'm a bit late to this thread but if any help I've been on Mom. now for three months. I've had no side-effects (that I'm aware of whatsoever). The hospital I'm with (Princess Royal University) had to in the recent past refer me to both Kings and Guys; they all obviously being aware of my tablet regime have never said that I shouldn't take paracetomol (which I have had ocassion to do without any problems). Also, there's been no problem with blood pressure tablets of which I take a very low dose.
As you state, we're all different but I hope things work out for you for the best.
Thank you. I’ve had to take my cocodamol as my arthritis pain is so bad. Apparently it’s so an infection isn’t masked by taking paracetamol, however I think I’d know if I had one! Only taken 3 so far but ok at the moment! I’m going back on the blood pressure tablets, they’re low dose.
I've been taking Momelotinib for about a year. I was warned about all the side effects but had not been responding to Ruxolitinib so didn't have a great deal of choice. I have suffered NONE of the side effects about which I was warned. It has been great for me.
I have been on Mom. for 11 days now. Had blood tests and see my consultant only yesterday. Platelets have stayed low , no change and my haemaglobin has increased by 10. I am happy, more than happy with these results. No side effects.
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