Indigestion and Jakavi?

[Patchworklife]

12 weeks into Jakavi treatment I’m now experiencing very uncomfortable indigestion under my left side ribs. Is this a common problem?

[Inca]

Hi Patchworklife,

I don't know ...I am also same time as you taking Jakavi....yes I have the

Indigestion,discomfort under left rib.....every day.Take omeprazole or zanaprol and usually Gaviscon after meals.I have only small meals and very careful about what I eat.Also constipation...the dreaded unspoken word !!!! Have to say apart from those awful things I do feel better than I was ,more energy,but tire the same as I always did.Just had blood tests for every organ in my body,results will be a bit delayed as Easter is in the way.

Will be interested to know how you get on not many on site take Jakavi,

Hope you manage well,it is supposed to be a good drug...keep in touch and Best of Luck .Sally

[Cja1956]

Are you sure it’s indigestion? Did you know that your spleen is located just under your heart? When I first got diagnosed with ET I was put on hydroxy and my numbers came down to normal. I stopped the medication and I remember driving to work and having what I thought was indigestion issues. I was in pain but I ignored it and later when I got home I had such searing pain on my left side of my chest, I thought I was having a heart attack. I called an ambulance and it turned out I had a blood clot in my spleen. I was in the hospital for 3 days. That was 11 years ago. I’m not saying this is what is happening to you, but I would have it checked out. It could just be that your spleen is enlarged. In recent years, I progressed to PV and now I also take Jakafi which has eliminated the burning sensation I was getting while eating once my doctor increased my dosage. Just a thought.

[Lab-Rat]

I’m +- 14 weeks into Jakavi treatment for grade 1 MF. I too have developed extreme discomfort and also pressure under left side ribs. My spleen was checked last year and was normal at 10 cm. Jakavi is supposed to manage spleen symptoms but I am seriously considering seeing my GP to check spleen as I am so uncomfortable, a bit like the character in the movie Alien as if something is about to erupt from my chest..!In addition I have terrible bloating and some weight gain (but still 8kg lighter compared to pre -MPN days). Please keep us updated.

[Inca]

Hi Lab Rat,

My spleen was checked by my consultant recently,it's normal.

Still get the bloated feeling and discomfort,chest too.

Sure it's the disease and Meds which are filling us with "'poison".....

Bound to be some side effect. Best to you .

[skipperL]

Before going on to Ruxo /Jakavi I had a lot of pain under my left hand rib, but now it’s only occasional. I assume my spleen has shrunk somewhat. Perhaps you should be investigated further. I am still trying to find out how many people on this drug get ‘the runs’ like me!

[Eire66 in reply to skipperL]

I do!! Been on jakavi about 8 years and take 25mg in the morn and 25 pm. I find taking 2 imodeum when I get up helps and eating small meals. I can go days without any problems then the runs can last for a while. I don't change my diet but I do have a very enlarged spleen. My MF is advanced yet I do my own decorating and walk for an hour a day and for a person of my age (68)seem to have plenty of energy. The imodeum is a life saver I don't need it everyday but don't hesitate to take it when necessary. The jakafi didn't shrink my spleen but our illnesses affect us all differently even though we have the same diagnosis!!! Good luck. Pat

[Patchworklife in reply to Eire66]

Thank you to everyone who responded so kindly to my post. Your help is gratefully received. Just to add to the Jakavi adventure I’ve now developed shingles despite having the anti-shingles vaccine a year ago.

[markokrist in reply to Eire66]

My mom is on Jakavi and apparently it stoped working,because spleen is enlarging and she suffers big pain from that, how big is your spleen?Doctor decided to put her on Hydrea as well,so waiting for some improvement. Your doctor isn`t concidering any extra medication for big spleen?

Thanks, Kristina

[eire]

Hi Marcokrist - my spleen is approx 26 cm. No shrinkage for a long time but it's not getting bigger. I am being considered for a trial drug but don't know any details as yet. It's a hard road to go down and we are all so different. If this trial comes off I won't know if I'm on the real drug or a placebo which is a bit scary. I feel for your mum and you as well it is hard on the family. Take care and I hope the hydrea helps.