I have started to have some pain and discomfort from my enlarged spleen, and wondering if anyone had any top tips for this?
I started getting pain/discomfort under the ribs and it's becoming more constant during the day now not just at night.
I was blessed to see Professor Harrison last week and I will be getting an ultrasound but in the meantime after having a venesection I am looking for other ways to help myself.
Thank you
Hi, I have a very enlarged spleen, hydroxycarbamide reduces it somewhat, I find eating small meals helps, it’s worse if I forget and eat too much - there’s just no room for the food! So my main tip would be eat very little bu more often to try and keep comfortable without losing too much weight and maybe the Prof will prescribe Hydroxy to help although of course this affects the blood counts. Good luck.
Thanks I am trying eating even smaller meals. I prefer little and often anyway. I really want to avoid drug therapy if possible as in the past had worst side effects previously which signed me off work. I am hoping the venesection I had recently will help. Ultrasound in early December.
Kia ora. I can relate to many of the effects of the condition and of the medication that others have shared on this site. It has been affirming to know that others are experiencing many of the symptoms/effects that I thought must be due to my age (70). Having experienced many of them I have noticed that they come and they go. I let the professionals fuss over my lab numbers, my body tells me how I am feeling. The enlarged spleen does not go away but in my case it has only occasionally (2x) caused any major physical discomfort. Pain relief and a cleaner diet helped until that passed. And so far I continue to work part time. Raw vegan diet changes how my body feels very quickly and my wife also appreciates the benefits of my plant based bingeing. But the sausage roll I had last week was delicious. I treat my condition as an opportunity to live a better life given that it has become a much clearer finite life. Mauriora!
Thank you, I do like a raw vegan diet in the summer although winter I prefer some warmer, and cutting out gluten. I know I can do better with my diet and I will definitely keep improving that. I have an ultrasound in December so will see how much more enlarged it is. Hope it was a vegan sausage roll! 
Best wishes...
I am also using a 'Plant-based' diet these days, and that seems to help me too... Although, my spleen is never super-sized, just mildly enlarged, and it tends to go up & down a tad...
Sorry I cannot be of greater assistance...
Steve
(Sydney)
Thank you. I am hoping it is going down since venesection as it's definitely not as bad as it was. Appreciate the reply and best wishes
Mine has reduced since being on Jakafi for a year...still get pain occasionally,usually after bending /lifting horse & dog related!! Small meals ,salads veg etc ,nothing rich ,no meat,just fish helps considerably,sensible exercise not my sort.......Best to you.
Thanks small meals is helping. I am vegan so no fish for me. I also want to avoid drug therapy as had a bad incident in the past.
I believe that Ruxolitinib (Jakavi/Jakafi) is the med thought to be most effective for splenomegaly. PEGylated interferon would also be a potential recommendation. Some docs even use a combination approach, though one would think a single-agent would be the first try. The only other thing I know of is to stay on top of the venesections to control the HCT.
Hope you get some relief ASAP.
Thanks Interferon was a plan B option but that is the drug that made me so ill I was signed off work as a sports therapist so I am avoiding and trying to avoid all drug therapy if possible for as long as possible. Thank you
I certainly understand your feelings about med side effects. I did try hydroxyurea, but was intolerant of it. We are each different and tolerate the meds differently. I am currently on a phlebotomy-only protocol at the recommendation of my MPN Specialist. Not a standard tx plan as I am age 65, but it seems to be working for me for now. I will explore PEG-IFN if things progress and I need to change the plan. I am hoping Besremi will be available in the USA when I need it. I will also be looking into a hepcidin mimetic (PTG-300) when it becomes available. I am fortunate in having a relatively indolent form of PV. I only have mild splenomegaly. I hope you find a viable tx plan for yourself that you can tolerate while benefiting from the treatment.
Regarding the vegan diet as referenced above, I could never keep to it full-time, but I found a vegan restaurant run by a friend. She is an amazing chef. I eat there (carry out or outdoor tables these days) at least once a week. OMG! The food is amazing! The raw vegan spring rolls and coconut curry ramen bowl are to die for! (Note: I am a big-time foodie and very discerning about what I eat). Amidst all the other things we have to deal with, enjoying what we eat can be such a blessing. We really can find food to eat that helps manage out health issues and tastes amazing. Sometimes we just need to enjoy ourselves.
All the best to you.
My husband spleen was almost double in size . He has post pvmf .
When he started ruxolitanib it reduced his spleen down so it's not far out of range now.
He used to feel a dull ache when his spleen was double in size now he's absolutely fine.
Tracey
That is wonderful news. So far my husband is doing ok. The hydruxua seems to help a little bit with spleen size. We have not been approved yet for the Ruxolitanib but hope to get it eventually. Is is such a shamefully expensive drug. All the best
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