Hello All,
I have really appreciated this site and all of you. I wanted to let everyone know the outcome of my previous post regarding low white blood counts and being refered to a hematologist. As mentioned my hubby had been on Enbrel for approx 3 yrs. with no complications and then suddenly things went really wrong.
After all the tests are in, we have found that his bone marrow is fine, he does not have leukemia. (Yaba Daba DOOOO). However, his WBC, along with most everything else has countinued to drop to very low levels (test read "PANIC" beside the number), even with high doses of prednizone. (He had lost 25 lbs. in 1 month, but after less than 2 weeks on the high dose prednizone he has gained 10 lbs.) The CT Scan was normal with the exception of an enlarged spleen. (He has been experiencing alot of discomfort in his side causing his whole stomach area to hurt and shortness of breath.) Thyriod is normal. Fatigue is about the same. Nodules are increasing in number which means the RA is on the rise since the Enbrel has been stopped.
Today after our visits with the Hematologist and the RA, we have been told that the spleen must been removed. Seems hubby is in a very rare percentage of people (less than 1%) who have RA. We believe he has Felty's Syndrome. While researching online, my sis refered me to a site which caused me to question the RA at our last appt. (she has just recently taken over for our normal RA doc who retired.) After speaking with our retired doctor, she agrees. There are three things that confirm Felty's. 1) RA, 2)low white counts, 3) enlarged spleen.
So, surgery is in the planning. There are immunizations to be done prior to, and he has to be tapered off the prednizone. Hopefully the surgery will bring his blood counts back to normal. I know that life will be a bit more complicated because of the risk of infections. But other than that....we don't know. I guess we will have to wait and see.
Also, Hubby has been put on temporary disability at work so the paychecks are coming in but we have no knowledge of how things work. (The company just says, "he's been approved through such and such a date".) He has always enjoyed is work but clearly cannot attend. He works as a digital tech. setting up phone lines for companies, so it is outside and inside, physical and always with the public. We are beginning to wonder if he will be able to ever go back. How do you go about getting permanent disability. Does the doctor just write a slip? Also is this the time to start looking into social security disability? How does all this work? He is 52, and has his 30 yrs in with Bellsouth.
I would like to hear from anyone who has Felty's, or any information that might help. Hopefully our information will enlighten others in the process.
Didn't realize I had written a book here. Thanks for listening,
Sally
Sally I have never even heard of Felty's disease. I'm sorry he's having to go through all of this...and will pray for both of you.
Please continue to keep us updated on his condition.
Lovie
Sally,
Thanks for the update...I had wondered how your husband made out. I also have had problems with low white blood cell count, but have never heard of Felty's. I'm going to go look that up.
Please keep us posted
Kelly
I hope these articles help. I don't know anything about this but saw these in my search for something else.Dear Sally, I'm sorry to hear of the problems your husband is having. I hope that he feels a lot better after his surgery. You are both in my prayers. love and hugs, juliah
Sally,
I’m so sorry to hear that. I’m replying because I had a similar experience with Enbrel. I took it for about 1 ½ years with good results. Out of the blue, I noticed that I had bruising all over my body. I went to the RD and found out that my Platelet count was 1 (I basically had no Platelets circulating). I was referred to a Hematologist and was diagnosed with ITP (auto-immune against the Platelets). I tried a number of medications (prednisone etc.) with no results. I then was down to 2 options- remove my spleen or try a medication called Rituxan. I did some research and opted to try Rituxan. Long story short, it put the ITP and RA in 100% remission. The RA came back after 15 months but the ITP has remained in remission (3 years now). Sounds like his condition is a bit different but I thought I would share nonetheless. Please let me know if you have any questions regarding my experience.