I was informed today on the phone that the mediascopy they did on Monday was Sarcoidosis NOT lymphoma which I suppose is GREAT news. When the Pulmonary dr saw me last he said if it was Sarcoidosis he would not treat it as I already weight almost 400lbs. I have EXTREME pain in my left abdomen from an enlarged spleen, although all of my drs said there is really no reason I should be hurting. Has anyone had the same issue, overweight and diagnosed w/sarcoid? What was your treatment?
I'm very overweight, but my doctors still aknowlegde that I have real pain. I have not had any pain related to my spleen. So far Sarc. has only affected my sinus cavities, throat, bones in my fingers and feet, lymph nodes in my chest and given me a general feeling of being tired etc. I've been treated with Prednisone in the past and now I am perscribed Plaquenil.
However, I have received abdomen pain in the past that felt like my organs were doubling over on top of each other as my weight grew from 250 lbs to 300 lbs.
I'm currently trying to eat healthier and am losing some weight as a result.
Typically the first drug of choice to treat sarc is prednisone, a steroid. As you probably know, one of the main side effects of steroids is weight gain. They also effect my mental stability as I call it. I deal with depression and when on steroids, my depression becomes uncontrollable.
But, there are other options of treatment. Usually the next drugs would be placquenil or mtx (methotrexate) neither of which should cause weight gain. Other drugs used would be Imuran, humira and remicade infusions.
If you are symptomatic and in pain, I would think you should be on some sort of treatment. Talk to your doctor and flat out let him/her know how much you are hurting and that you would like to talk about other treatments options that where your weight wouldn't be such an issue.
If I might chime in, if there is a common surgery for sarcoidosis it is removing an enlarged spleen that is caused by sarcoidosis. This has had a therapeutic effect on all the symptoms for some people (big mass of inflammatory tissue suddenly gone....).
Good luck - but I'd ask for a surgical consult given the symptoms, findings of a large spleen and pain.
Angela, how did they diagnose the sarcoid in your sinuses and how are they treating it.
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