Spleen problems anyone?

[LisaMarie]

Has anyone had spleen involvement with their WG?
Found an interesting article that describes my left shoulder pain to a t and my left side pain...now I have a lump that comes and goes and at times is painful...plan on haveing a CT done when i CT tmy Lungs this month ...What the heck miay as well Ct everything From Neck to thighs...just to have a base line...mayu also try to get second opipion from myo 's new clinic....Cellcept is tolerable but I slept 36 hours this weekend straight...only got up to pee and take meds....so much for spending the weekend with my kids...but doc said rest when my baody says rest...can not afford another hospitalization...ugh
so let me know if anyone has had spleen invivement or spleen infarcts because of WG
:crying:

[elephant]

LisaMarie, I had my spleen check by a couple docs because I was complaining of pain there. They said it was normal size and felt it. I think WG attacks any organ, but we all know it loves the kidneys, sinuses, and lungs!

[JanW]

Stupid question -- where on the body is the spleen?

[elephant]

It's on the left side under your left rib cage. No question is stupid. :)

[pberggren1]

Stupid question -- where on the body is the spleen?

I think it is in one of the feet.

[Sangye]

Lisa Marie, I've heard of spleen involvement, but it's quite rare. It's good to get it checked out, though. I do hope you're joking about a neck-to-thigh CT? That's a lot of radiation. Please be very careful about radiation exposure. You never know when you'll need a lot and there is a lifetime limit on how much is safe. CTs will get you to that limit quickly.

[drz]

Lisa Marie, I've heard of spleen involvement, but it's quite rare. It's good to get it checked out, though. I do hope you're joking about a neck-to-thigh CT? That's a lot of radiation. Please be very careful about radiation exposure. You never know when you'll need a lot and there is a lifetime limit on how much is safe. CTs will get you to that limit quickly.

Unfortunately many cancer patients such as those with lymphoma often have those every season since it is the only way to detect spreading of cancer to new area in time to treat it.. I think many Wegener's patients also have similarly high levels of exposure. I was just reviewing the results of my lab work on my electronic chart and found 10 days where I had a chest x-ray every day, sometimes two times in same day. I know at the time I was bleeding badly in lungs and they had to monitor bleeding, but that is a lot of X-ray plus several CT scans to check for kidney damage and problems else where. I know they prefer MRI and ultrasound when possible to assess for problems but x-rays are hard to avoid with problems and complications we can get.

[Sangye]

Yes, that's why I suggest we limit it unless it's absolutely necessary. One complication down the road can land you many x-rays or CTs. Same for our veins-- you have to protect them from unnecessary blood draws and IVs as you go because you can easily ruin them.

I'm in both those predicaments. I've had well over 50 x-rays and over 30 CTs in 4.5 years-- most of that radiation was to the chest. That's over 3 times the amount of radiation from Hiroshima. Many of those studies were necessary but many were done out of fear or "just to check." Some were done even though my symptoms didn't warrant it.

I've had tons of blood draws in 4.5 years, too--so many that I only have a couple veins left to use. Prednisone makes your veins fragile so you can go from good vein access to almost none very quickly. It's a major deal for me to just to get a blood draw, and an IV is extremely difficult.

Unfortunately MRI is not interchangeable with CT. For example, MRI of the lungs will not show much. CT is the preferred study for lungs. We should also limit the use of contrast dyes. It's additional radiation that is often not necessary.

[dunkie2202]

I think it is in one of the feet.

ROTFL :lol: :lol:

[LisaMarie]

Ok CT shows borderline splenomegly....fatty thing on the head of my pancrease...denisity on my liver and echo showed a fat pad in my pericardium by the efffusion...but my lungs and kidneys are fine ....now to wait to see what the doc says...my spleen was not as large and painful on day of the scan as it was before ...so maybe it is getting better....can not wait to get off pred...and see specialist at Mayo

[elephant]

Thanks for letting us know LisaMarie. Hope all gets sorted soon.

[Natalie]

Hope your spleen is all ok Lisa Marie :unsure: I have never heard of spleen involvment ?.
just want to ask a question of what sangye said about the radiation and contrast dies. I have MRIs on my Orbits with dyes but I think this IS a necessary test with having eye involvement ? would you agree ? I have One every year unless I'm having trouble in that area .

[Sangye]

Natalie, that's a question to ask your eye specialist. It could be necessary in order to monitor your eye involvement, or it could be overkill. I would have no way of knowing which it is.

[Natalie]

thanks Sangye .. I will be asking
you always find something in these treads .. that makes you go ooh ?????:)

[Sangye]

I sure do! I take lots of mental notes :biggrin1:

[drz]

I sure do! I take lots of mental notes :biggrin1:

I think we all find things we want to ask our treatment team about. It is great to share info to help us keep up with what is good recommended treatment and treatment options. Thanks to all who post.

[elephant]

When my eyes were bothering me they did a CT scan of my orbitals to see if Weg was involved.

[dunkie2202]

When my eyes were bothering me they did a CT scan of my orbitals to see if Weg was involved.
Could you tell me exactly how your eye's have been affected please? I don't know if mine is related to Weg's or is just an infection.
My eyelids are red and the bottom one is sore plus my eye is mucky. Could it be just conjunctivitis?

[elephant]

It could be both, WG attacking the eyes/ and an infection.
How my eye were affected- they felt like grit was in them, the felt sore, the eye lids were swollen sometimes and I would always get eye infections, red eye ( doc thought allergies). I was constantly at the eye docs and saw so many different ones to get second , third, forth, fifth.....ect... opinions.

[dunkie2202]

Ok thanks for that elephant, I will get it checked out tomorrow when I see my Doctors.

[dunkie2202]

Got an appointment this morning to the GP, he had a look at my eye and said it was in the lid only and it was conjunctivitis

[elephant]

If it doesn't go away suspect WG behind it. Hopefully it is conjunctivitis!

[LisaMarie]

Found an article on spleen involvment with WG...it causes the spleen to have infarcts...and cause left shoulder will try to post it here...wishe me luck

[elephant]

Thanks LisaMarie, glad you found that article.