Enlarged Spleen

I was diagnosed with Sarcoid in March 08. One of the first indicators that something was wrong was my enlarged spleen. But this doesn’t seem to be on anyone’s list of symptoms. Has anyone else experienced this, and did you find that the prednisone helped?

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Every Ct Scan or X-Ray has showed an enlarged Spleen. Also I get pains in the upper left side of my abdomen under my rib cage- I call it my spleen pain.

My doctor has never commented on it. The only reason I found out was becuase I requested a copy of my medical files and saw it written in it x-ray technician's notes.

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Your post caught my eye! I was first diagnosed when I was 40. I had a period of several weeks when I couldn't eat anything without feeling sick to my stomach. I had lost about 15 pounds (at a point in my life when I really didn't need to lose 15 pounds) when a MRI showed that my spleen was quite enlarged. My spleen became affectionately known as "Clifford, the Big Red Spleen". No doctor ever said as much, but I feel that the pressure from my spleen was what caused my nausea. I have been on Prednisone since then and things have been much improved. My spleen remains slightly enlarged but not like it was. The range of symptoms continues to vary from day to day with some days better or worse than others. I know some people don't tolerate or respond well to Prednisone, but for me it has allowed me to still have a life. I don't think I'd be worth too much without it. I hope this helps a little. It can be a slow process to work through all the tests and appointments to the point when things start feeling better. Hang in there.

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Hi,

I fell ill a couple of years ago where my platelets and red blood cells fell dangerously low. It was then discovered that i had an enlarged spleen. Have they done blood tests to check all your levels? What happened to me is very rare and i had never heard of anyone else having the same problem. Please make sure they monitor you carefully and that you don't become anaemic either.

Susan

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My husband has an enlarged spleen and was told by the liver specialist it was due to portal hypertension in his liver. He has granulomas on his liver as well and high liver enzymes. His enzymes have come down and his spleen is not as enlarged. So....... maybe there is some liver envolvement? Good luck and be well.

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Thanks for all the responses!
I have always had a problem with anemia. I would have to "pump iron" for days before giving blood so they wouldn't reject me. Lots of red meat, etc. I've been getting regular blood test from my hematologist. She says my levels are all getting back to normal since I've started on the Prednisone. But the spleen is still enlarged. I had the Epstein Barr virus at some point, but it seems to have ebbed in the passing weeks.
Hooperling - what got me to the dr. in the first place was that I was nauseous and was losing weight. But the nausea has since gone away. I knew my spleen was enlarged for a while - I could feel it protruding out from under my ribs. I showed it to my former gyno and she tried to tell me it was my ribs. Thus the former gyno.
I will make sure that they keep an eye on my liver as well. So far everyone says it looks fine.
Thanks again for the responses. This whole event is really starting to get to me. I think I need a day off.

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Hi,

when I had a big flare up and ended up in hospital.. I got an enlarged spleen too. It went down again though..

Mark

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I had my spleen removed last Oct, after we determined it was enlarged to the point that all my blood counts were down, especially the whites. Since I actually have had positive biopsies for both Sarc and Lymphoma, was expecting the cause to be lymphoma. Wrong, no cancer whatsover, all granulomas to the point that the spleen was no longer functioning correctly. By the way, all my counts returned to normal upon Splenectomy. it had been enlarged for 5 years, but only after weaning off prednisone a couple of years ago did it decide to blossum.

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Jolt, Thanks. That's good to know. I will have to keep an eye on it as they would like to ween me off of Prednisone in six months.

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Hi Guys, I had an enlarged spleen and had to have it removed. I blood platlets had gotten very low. Immediately afte the doctor removed my spleen, my blood platlet count went up. This happened last year In June, 2007. I have have my count checked this year and they are O.K.

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I had an enlarged spleen and liver about 25 years ago. They were so grossly enlarged you could see them thru my skin. Liver function was normal pain was unbelievable. Felt like they sloshed together was just ready to go for biopsy and walla it all went back to normal. Guess it was about two months

Ellen

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I was diagnosed with sacrcoid about 20 years ago when I was 19. I had a injury totally unrelated and was caught on the xray luckily by a doctor that had sarcoid himself since it is so hard to detect. After the surgery to confirm sarcoid I was made aware that my spleen was enlarged. I have had no problems whatsoever for nearly 20 years with the exception of my lung capacity and not being able to run as hard as I used to be able to do. Recently I have had pains in my left side and am waiting the results of the ct scan to see if it is due to my spleen and I would be curiuos to know from others if prednisone does work. I have been on and off this med during my 2 flareups of sarcoid in the last 20 years as well as every time I get a cold. Prednsone does cause me to get moody and I do worry about the long term side effects of this drug especially with the bones but I would be curious to know if this drug helps with the enlarged spleen pain. The last thing I want to do is have my spleen removed. If anybodu has any ideas please let me know. thanks

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I had my enlarged spleen removed in September 2004. The symptons prior to this was that I could not eat very much at all without feeling very full. My spleen was the size of a football and weighed 10lbs. I was first diagnosed with Lymphoma, and then after the biopsy was neg they diagnosed Sarcoidosis because of the presence of granulomas. I was on prednisone for 1 year after and things went back to normal. Just this past August I was hospitalized with renal failure due to high calcium from the Sarcoid. I am now on prednisone again, and also have Sarcoid of the skin, with lesions mostly on my back and upper arms. I am slowly tapering off my prednisone and now have tingling in my hands and feet, and major muscle aches and pains. I am so glad I found this site as I have noone to talk to about my illness.

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ReneeAZ
I am so terribly sorry for your troubles. Yes, this forum can be a wonderful source of relief - talking to new friends who understand what you are going through. I have learn so much here and it has made me ask more questions I never would have thought of on my own.

I am surprised that you haven't been put on methatroxate by now. Have your dr explained why only Prednisone?

As for my own spleen, they say it hasn't gone down in size but I can no longer feel it poking out from underneath my ribs. I take that as a good sign. I am off pred. and my calcium levels are a high-normal as are my ACE levels. I feel lucky but anxious. Waiting for that other shoe to drop.

I hope things go better for you.

CatieLee

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I think that because of my extensive kidney damage they did not prescribe the methatroxate. Plus, I do not have any signs of Sarcoid in my lungs. My calcium levels and ACE are all normal now. I do have a "spot" around my pancreas that was shown on the original CT scan I had in August. I'm having an ultra sound done next week to see if that has decreased now that I've been on the prednisone for a time. They would like to do a non-contrasting CT scan but since that is processed through the kidneys, my kidney Doctor does not recommend that.
I hope things go better for you too -
Thanks for the support - I am so thankful to have found this site!

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I too have an enlarged spleen and no doctor told me. I requested my records to send to a sarc specialist for my lungs and read the ct scan done to diagnose the sarc in my lungs nearly two years ago. There is was in the report. My lung dr never mentioned it, he only showed my how the sarc was in my lungs. This is my second time around after several years of remission.

Some of my blood tests were low normals but mostly my CBC tests were in the normal range. Sometimes I am aware of my some pressure in that area but when a dr doesn't mention it does that mean it is not a big deal or that is out of his area of specialty? Go figure. If I was given a choice of long term prednisone treatment or having my spleen removed, I would go for the removal of my spleen. Of course I am in my late fifties. I might feel differently if I was a lot younger. Prednisone is like a double edge sword. Good luck to all of you and yeah I love this website too.

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MyHealth,
Goodness gracious! You need a new GP! Drop you family doc and find a new one. There is no excuse for that.

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My son has a "generous" spleen as well. He also has an enlarged thimus.

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MyHealth, Are there any sarc specialists in your area or that you can go to? I think some docs tend to discount patients complaints or results with diseases they don't understand or care to treat.

I had a 24 hour urine test the day after Thanksgiving. I never heard so I called the doc's office and asked for the results. I asked them if everything looked normal and they didn't have time to call me could they at least fax the results to me. They did so I thought everything was fine. When I looked at the tests I saw that my urine calcium test was extremely low. So I called his office and asked someone to please call me and explain what this means and what I need to do next. Well have any of you heard from him because he hasn't called me? That was a week ago. I feel your frustration.

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Hi, I have an enlarged spleen. It was found when I was sent for an ultra sound for my gallbladder. They found the enlarged spleen and a mass the size of a plum behind my pancreas. They decided to do a biopsy on both. Both came back showing sarcoid cells in them.
I was on Prednisone and Methotrexate at that time. To this day (that was a year ago) my spleen is still enlarged and the mass behind my pancreas is still there... Hang in there it does get better.

Jennifer

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HI everyone!

I am so sorry to hear what everyone is going through...sarc is such a bummer huh!!

I was diagnosed with Sarc in April of 07. Ever Since then, I have been suffering terribly. My doctors are at a total loss! They have no idea how to treat me. I have been on pred. and on metho! I have sarc in my lungs, liver, spleen, kidneys and lymph nodes in chest. My spleen is the worst. I suffer everyday with extreme pain. I have been to the ER on several occasions for the pain. I have been told that I have innumeral hypodensities in my spleen. Does anyone else have these?? They keep getting worse. NOW my doctor feels that this is not related to sarcoid disease...so I am going to see a surgeon tomorrow to talk about having my spleen removed. I see that alot of you have had your spleen removed...so it seems like it is a pretty common prcedure. So that is good! But my "spleen pain" is at a point where it affects my everyday life. And after 6 months of being on the highest dose of metho...and it only continued to get worse...I am a little concerned. So, I am interested to see if anyone else out there has been told that they have hypodensities in their spleen as well.
Thank you!
Kim

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