Hi, I have just found this board and hope someone can help. My husband has been on Enbrel for several years because of RA and recently was taken off because of very low white blood count. After a month, another blood test and even lower white count and also red count down. He has been refered to a blood specialist, who we found treats luekemia patients, and he wants to do a scan and also a bone marrow biopsy. Has anyone experienced this with RA. Thanks
Hi Sally,
I got a call from my doctor telling me that my white blood cell count was very low and to go off my MTX for 2 weeks then get my bloodwork redone. I found out this week that my white blood cell count is still very low and to go another 2 weeks then get my bloodwork done again.
I have no advice for you, just wanted to say I'm going through the same thing right now. Just waiting to see what happens when I get my bloodwork done again in 2 weeks.
Kelly
Thanks for your reply. My hubby also has been having night sweats and mouth ulcers. Have you had any of this?I've had night sweats, but I was assuming it was caused by perimenopause since I'm 43.
I haven't had any mouth ulcers.
Is your husband on any other meds?
As i'm sure your aware, Enbrel, as with some other Bio and disease modifiers can cause problems with the immune system. In some cases severe infection has been reported, its certainly considered a possible side effect. Never had any serious problems with my bloods myself, but my brother (who also has RA) had a bad reaction to a DMARD a few years back. His immune system crashed out completly, his white blood cell count dropping in half. Mouth ulcers are common enough with some dmards, MTX for example, but this could be caused by your husbands low white cell count.
Enbrel can take a while to work its way out of the system, so hopefully the blood specialist is just a precaution.
I'm sorry that your husband is going through something like this, and i hope things work out.
Oh, and WELCOME to the site.
Yes, I have had a similiar experience. I am on Remicade and Arava. I switched from Methotrexate to Arava in November, and by January my doctor was concerned about my blood count. My total count was fine, but my neutrophil level was steadily decreasing and was below normal. Neutrophils are one of four types of white blood cells and are one of the key immune defenses. I was told to stop taking Arava and referred to a hemotologist at my local hospital's cancer center. I was in a panic. I was so afraid that there was something really wrong with my blood.
The hematologist took a blood test right there and had my previous tests. He didn't know about Arava but consulted with my rheumatologist to see what to do. Since I am very healthy other than the RA and my neutrophil levels were down but no where near a point that poses a serious risk, my rheumy and the hematologist both decided it was safe to keep me on both drugs. They surmise that my count decreases with the combination of Arava and Remicade and that it is actually rare to happen like mine is, where the total count is normal. Since that combination works so well, I can stay on the meds but I have to have blood drawn every two weeks. I was reassured that the low count posed no risk to my health, and other than seasonal allergies and a stomach virus, I haven't had any colds, flus or infections in well over a year.
I know it's hard to relax, but please reassure your husband that there is probably no cause for alarm. It sounds like his doctor is on top of things and just wants to make sure that everything is okay. These RA drugs are very strong and they have to be closely monitored, and his doctor is following protocol.
HI, I know that you are upset, and reasonably so. I had acute renal failure a few months ago, probably due to meds. I had a bone marrow biopsy, blood transfusion, iron infusions, and a whole lot of lab work. My blood count is up now, but my iron is still low. People just don't understand how serious this can be.
Has your husband ever been tested for lupus ? I have Lupus and RA, but started with Lupus, had night sweats, mouth sores, and very low counts....due to lupus caused bone marrow suppression. Also a friend of mine who has RA also has extremely low counts on Enbrel and was also referred to a hematologist to do cancer screening, including a bone marrow biopsy. I know you must be feeling very scared, but remember there is a good possiblity it is either the disease or the meds. I just wanted to thank you all for being here. I was so frantic trying to find information. I will look into lupus. It's so hard to be patient and wait for the doctors to set up tests. We are waiting on a referal for a scan and then a biopsy Jun 10. Thanks again.