[quote=DanL;16262]
I assume that the PCP was from the combination of Rituxan, Prednisone, and Imuran. I was taking all 3 during the months of June, July and then the latter two in August.
Are you sure?
Prednisone can cause such infections when given for a too long time for augmenting the thrombocytopenia. Three months of intake are too long and there exists the danger of getting infections.. I have studied this yesterday and safed some studies related to this problem in my inbox. If you like, i can send you the links which perhaps are not so interesting for the whole forum...
But i don`t know about Rituxan and Imuran leading to infections (my lacking knowledge- perhaps they do in some cases)
When prednisone works, it usually leads to an early platelet response after a few days and should be tapered after ca. 4 weeks.
But maybe Prednisone did not help you, and instead Imuran let increase your platelets? You can try to analyze this looking in your blood-reports conbined with the times of intake of prednisone and Imuran. When did the platelets begin to rise? This knowledge could be helpful for you. You can see then, if you are responding to prednisone or not.
>After the doctors figured out that it was PCP, I took Bactrim for about 3 weeks and was better. I am fully recovered.
Why are you sure for that?
>The biggest problem there is that I think that I had the pneumonia for about 3 weeks before recognizing the problem. I went in a little bit naive about the potential for side effects from the various treatments, so I didn't really know what I was looking for......I do know better now.
This seems to be not a side effect, but an effect of too long intake in your constellation.
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For your prognosis and treatment assessment it would be necessary to know your exact classification. Did the doctors classify you now as WHO - "MDS - unclassified" ? I m not so sure how the doctors in your case came to this classification and if the differentialdiagnosis could perhaps show another possible diagnosis.
Perhaps it would be useful to consult a mds-specialized hematologist for a second opinion. The treatment then could be different..
If you should be "MDS-unclassified", a special risk assessment should be made in estimating your prognosis. The scoring systems do not put MDS-unclassified in any risk-class and it is the estimation of the treating doctors to assess your risk-status, which can range from low up to higher risk classes.
Maybe your doctors did that before proposing Vidaza. Are you informed?
I absolutely cannot contribute much to that.
Your doctors have the exact results of your blood and bmb-parameters.
How high is your LDH? Do you show signs of fibrosis? .. and 100 more questions plus expertise from an experienced hematological team...
But i today will go to my hospital for my first phototherapy session for my slerodermiform GVHD. In the library they should have the fulltext of a study recently published, where different additional parameters are described, which can result in a poor diagnosis for some even low-risk MDS-Patients. If not somebody else has taken the journal from the shelf, i can copy the few pages and thake them home.
You can get title etc. of the study by going to
http://pubmed.org , and then typing in 20573398
Regards,
Margarete