Spleen pain

[Murry33]

My spleen grew 4 cm recently and the pain is unbearable! Does anyone else have this issue? I started back in Jakafi and was wondering how long it will take to ease this pain? Thanks in advance. Mary

[jane13]

mine was seriously enlarged, started to shrink within a couple of months and no longer palpable within 6 mths

good luck

[Murry33 in reply to jane13]

Six months! I’m in severe pain and I’m praying for relief much sooner than that! Thanks so much for your reply. Mary

[Wyebird]

I can’t help you sorry but the one rely you’ve had is reassuring.

Hope things ease

[P-O-T-S]

Hey Murry,

I’m afraid I don’t know the answer either but starting this Friday I have been all of a sudden in a lot of pain from my spleen, due at haems tomorrow. I feel mine may have grown! So I do sympathies with you. I do hope the meds work quick for you!

[Murry33 in reply to P-O-T-S]

Let me know what they tell you and I hope that it doesn’t last for you as well it’s awful being in this pain

[Stevesmum42]

I do hope you get some relief from you pain soon.

Kind regards Sandy

[fee13]

I was getting pains under the ribs on both sides when my liver enzymes were high and immediately started to take milk thistle (with high silybin content) to lower the enzymes. After a couple of weeks I noticed no pain and searched up milk thistle and the spleen, apparently it helps shrink enlarged spleens which was an added bonus to taking it. Ask your doctor first before taking it though.

[lbailey1090]

So sorry you are in pain. I also have an enlarged spleen and on Jakafi. My spleen seems to hurt with alcohol and Tylenol.

When I first started jakafi, it took around 2 weeks to feel relief. Drink a lot of water helps. One think that seems to bother my spleen is bending and turning.

[daibare72]

Good Morning Murry33. I see that you've started following me. You'll find me rather boring as I've been PMF Low Risk for going on to 5 years now; I'll be 65 years old this coming April. Still no real symptoms other than very low platelets, low white blood cell components and high reds and a mildly enlarged spleen (I feel discomfort around my left ribcage if I eat a little too much!). And I've tested JAK2 positive. So...I've read through your posts and I'm unclear as to where you're from (I hail from Wisconsin in the good ol' USA) and what you've been diagnosed with (high platelets might indicate ET which my brother has). I am very sorry for your discomfort and hope that the Jakafi helps soon. I know horrific pain as I suffered terribly for 2 years, 3 months non stop with acute gout attacks in 4 joints prior to my diagnosis with MF. My uric acid was through the roof and is one of the (less common) symptom of MF. I'll be thinking of you.

[Murry33 in reply to daibare72]

Hello! I am from Florida and I started following everyone that I could find in the US. I have MF and am currently preparing for a transplant and the next six months . I am Jak2 negative and CALR2 positive..The jackafi has reduce my spleen so I am not in pain at this time.

I just turned 57 and was diagnosed with ET probably 15 years ago. I was on a anegrelide for many years and then hydra for about 3 years when it stopped working. I go to Moffitt Cancer Center and it is supposed to be one of the best. There is some wonderful news as my sister is a perfect match !!! I work full-time and I try to walk daily so I don’t let this affect my life as much as I possibly can keep it away... of course the transplant will be a significant change for me but I am trying to be strong and prepared as possible. I appreciate your reply and I wish you the best. Mary

[AMD6yr]

Hi, Murry33. Sure hoping you get your transplant SOON and fully back to living again. So far, my polycythemia vera is controlled with Hydroxyurea meds and blood draws (phlebotomy) every 3-4 months. Have "live-able" symptoms - itch when I shower, "power surges" now and then, occasional toe pain alleviated with aspirin. I know my doc checks my spleen every visit. Will be thinking about you. Let me know how you're doing. (I'm in USA, too)