MPN Voice
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Enlarged spleen

I am really worried. I been having pain in my left side for a few weeks, nothing to bad just aware off a bit of stabbing from time to time. Then last weekend it was really bad to the point that i was rushed to A&E. The Doctors there said that my spleen could be felt so was enlarged. and said it was a side affect to my ET and sent me home. I also had Urinary tract infection so gave me 3 days of antibiotics. This week I have felt very low, and under the weather, also my glands are up. I am in a Lot of pain with the spleen and i am getting worried. I not seeing my Dr till the first week in Jan, my platelets are at 400 +, i know that not hight but my last blood count was 289, so they have jumped in a month since i last had them done. The A&E team sent me home so they were not worried. I am i over fussing. should i just leave it and talk to my Hemo in the new year???? or am i right to be worried?????

9 Replies

Hi sammypink, sorry I am not a medic and have PV. I think you are too worried to leave it until the New Year. Personally I would be asking my GP at least or can you phone your haem and get an answer.? There is no point worrying yourself over what should be a happy time!. Sorry I can't help on the medic side but if your pain gets worse again I would go back to A&E. I think it is better to be safe than sorry with our MPNs. Thinking about you - let us know how you get on. A urinary tract infection can also make you feel low and yuk!! Kind regards Aime xx


Hi Sammypink. I agree with Aime. If you are as worried as you seem to be it is the haematologist who can give you the best answers. I have moved several times since diagnosis 19+ years ago and have yet to come across a consultant who objected to being contacted between appointments or a request for an earlier appointment. I know we don't want to make a fuss but where there is genuine concern the appointment system might have to go out the window! If you are unable/unwilling to contact your consultant then press your GP to do it on your behalf. Don't spend Christmas worrying perhaps needlessly. UTIs are horrible - I've had 3 in the past three months! Now on continuous low dose antibiotics. 3 days seems a short allowance - mine were five days each course but I guess it depends which antibiotic the infection is sensitive to. Spleen pain is no fun either! Hope you get sorted soon and are able to relax a bit.


Hi sammypink do contact your heamotologist dr or nurse my husband has mylofibrosis with an enlarged spleen he had bad pains in his stomach saw his gp who treated him for a flare up of IBS was not happy so contacted heamotologist nurse had an appointment same day had a scan and found out he had a splenic infarction so please seek advise don't leave it till January. Wish you all the best god bless you .


hello, Kisses,

how old is your husband, and how does his myelofibrosis, affect him,

and how long has he had it. I am 62, and have had two years.


Very difficult to measure spleen enlargement without an ultrasound. A&E teams don't understand MPDs so wouldn't rest at that.

Try and push for an appointment so your not worrying over Christmas. Worrying and not knowing is often worse! :-(


Sounds very like a splenic infarct, get yourself seen for a formal diagnosis and proper analgesia. Most need no more than that


Enlarged spleen is certainly a side-symptom of PCV and ET. I agree you should contact your haematologist. Ring the secretary and ask for the consultant to phone you back. Enlarged spleen can be felt by a doctor on examination, and the consultant should really palpate the abdomen on every hospital visit, but they often omit this, so you may have to ask for it. An ultrasound (the same technique as pregnant women have to detect the baby) will show enlargement for sure. Don't be afraid to demand a proper examination and get the information you need.




Here here for all supporting you to get evaluated by someone with a deep understanding of MPN issues. Best to you, blessings for the holidays, and health!


Hi I am new to this forum, But in answer to your large spleen, I have myelofibrosis.

it was my enlarged spleen, that was the first sign of my illness, the treatment, I take

jAKAVI ruxolitinib 20 mg.It is not a cure, but does help to keep the size of my spleen

down. Have you tried this, let me know.


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