Felty' Syndrome
arfaitis
Member Posts: 155
I have been asked by another member to start a thread about my condition which is extremely rare, but arthritis related.
My condition is called Felty's Syndrome, another name is Spleenology {SP}
All the symptoms are in this link Felty's
Mine was diagnosed by chance back in 1981, not by the RA clinic I was attending, but the Haematology Dept. at a Coventry hospital, my symptoms were of course the RA but I was going down fast with a very low white blood cell count, which they thought was possibly leukemia, luckily for me this wasn't so.
After scans that were done on my internal organs they discovered my spleen was extremely enlarged [Spleenology]
The condition was so rare that every consultant I have ever seen has had to read up on it, before treating me.
Back then sufferers were loosing limbs and all sorts of horrible things, I was treated with drugs of all different kinds to find one I responded to.
I would like to say at this point if you see anything that looks as though it is your symptoms, don't panic it probably isn't because it is very very rare and the likelihood of you having it is next to zilch.
Please read the link for symptoms etc, that will explain it better than I can.
I have responded extremely well with the use of methotrexate and rituximab which is a drug that is infused when ever my body requires it, at the moment once a year for the infusion whilst I am in remission.
Arfa
My condition is called Felty's Syndrome, another name is Spleenology {SP}
All the symptoms are in this link Felty's
Mine was diagnosed by chance back in 1981, not by the RA clinic I was attending, but the Haematology Dept. at a Coventry hospital, my symptoms were of course the RA but I was going down fast with a very low white blood cell count, which they thought was possibly leukemia, luckily for me this wasn't so.
After scans that were done on my internal organs they discovered my spleen was extremely enlarged [Spleenology]
The condition was so rare that every consultant I have ever seen has had to read up on it, before treating me.
Back then sufferers were loosing limbs and all sorts of horrible things, I was treated with drugs of all different kinds to find one I responded to.
I would like to say at this point if you see anything that looks as though it is your symptoms, don't panic it probably isn't because it is very very rare and the likelihood of you having it is next to zilch.
Please read the link for symptoms etc, that will explain it better than I can.
I have responded extremely well with the use of methotrexate and rituximab which is a drug that is infused when ever my body requires it, at the moment once a year for the infusion whilst I am in remission.
Arfa
0
Comments
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Hi Arfa
Firstly can l say welcome to the forums from me. l hope you will find them as helpful as l have
Felty's sounds really interesting...gosh how scary! Imagine them thinking it was leukemia. So glad it wasn't....
and that you are well under control with rituximab and MTX.
Love
Toni xx0 -
welcome to the forums from me as well you are very lucky by the sound of it some one was on the ball valval0
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