Low white cell count on tecfidera

[littleshelley]

I just got results back from my internist that my white cell count is low for the 2nd time. She wants me to talk to my neurologist (I have an appointment on Wednesday-coincidence). I'm afraid that he's going to take me off tecfidera-I've been stable for years. Anyone else experiencing this?

[timandlisa66]

Oh no, I am also on Tecfidera and have been stable. I pray that everything turns out Ok for you! I also have a appointment on Wed. with my Neuro and she will send me for bloodwork. Please keep us posted with what you find out. Your in my prayers!!!

[jimeka]

I pray that all goes well on Wednesday for both of you and you get good results, Gods blessings Jimeka

[Fancy1959]

Littleshelley, hello this is Fancy1959 welcoming you to this wonderful chat room. We've actually become like an extended family and we're growing very rapidly. We are always glad to have another and MSer join our ranks. I was on Tecfidera for almost 2 years. I never had issues with my white cell counts dropping too low. Instead, what I thought was a fantastic, easy to take, and easy to deal with MS treatment, let me down. I started to notice an increase in some of MS problem areas and when i was tested, I had gone from RRMS to SPMS. Please keep us posted about your white cell counts. And I will think of you often and hope that your neurologist just keeps a close tab on your disability areas so that you did not have the issues I dealt with while on Tecfidera either.

Glad to have you aboard! Remember together we are stronger!

[Kevin_McMillan]

I'm sorry for you white blood count, I had the same problem but mine was instant. I was put on a 300 trial when it was released. I also suffered the same troubles as Fancy 1959 and was sick for the first 4 months, house and bed for the whole summer. I have seizures now but it has been quite some time since I demanded to be removed from Tecfidera. I went back on Copaxone with no help, the reason I went off of it!!! Will not try anything else so I left her care. Good luck with your appointment, you have to self advocate.

[Hidden]

How low was your count? I am on tysabri and don't know how low is considered too low? Thanks julie

[littleshelley in reply to Hidden]

Good morning Julie,

My count was 3.3(normal is 3.8-10.8) I think my last one was almost exactly the same. I know my dr said if the count was not a one time thing, we would have to look at a change 😞

[Kevin_McMillan in reply to littleshelley]

Hello Littles holley and Julie!

My white blood count was about that (3.3) when they checked it, high blood pressure, high liver count, low platelets. My Twin has multiple Myeloma, my PCP tested me for it because my blood work was looking like his but it wasn't until the second lab work, lower white count (3.1?) They took me off and that is because I complained, they sent me down for new bloodwork...worse! I was sicker and in bed more than out, sleeping 18 hours/day! My wife told them he is done taking Tecfidera Today!

[littleshelley in reply to Kevin_McMillan]

Kevin,

I'm so sorry that you're having such a bad time of it. Just curious, are you seeing a neurologist or just a internist/generalist?

[Kevin_McMillan in reply to littleshelley]

I WAS seeing a Neurologist at the "Best" MS Clinic in the state sponsored by the MS Society. She gives talks on topics all over the state about issues I question her knowledge about. A Dr friend of mine knows the director of the Cleveland clinic. He knows the director of my OLD clinic, they are out of date. I was always telling her of new findings and treatments, oh...bring me the information. It was 6mo. Old! Ughh!

[littleshelley in reply to littleshelley]

Neurologist. He's one of the better known ms specialists in the area. I went to see another ms specialist at a large teaching institution for my tn and she concurred with what I was already doing.

[littleshelley]

I've got my fingers crossed for both of us! Stable is so good. It allows us to focus on anything else besides us! Will report back!!

[WAshingtongirl in reply to littleshelley]

Let us know how both of your appointments go. You both are in my prayers.

[LISAANNE0309]

Hi littleshelley, I started Tecfidera in May 2013 and over the next 15 months, my WBC and neutrophil count dropped very low. I had even cut the dose in half, but nothing changed. In July 2014, my WBC was 2.0 and my neutrophil count was 1300. So, my counts were too low to continue the Tecfidera. Hopefully yours will stabilize and you can continue the Tecfidera.

[agapepilgrim]

My WBC is going down on Aubagio.. I have same fear. My platelet count also is going down. And liver enzymes going down.

[Klclippert]

Hello littleshelley - Im also on Tec and very happy with it. My neuro at Univ of Michigan had been testing my WBC but she never indicated that there were any problems. I haven't been to visit my neuro in awhile since Ive been totally fine, until a few weeks ago I came down with shingles, the only health issue Ive had in a long time. (Ive even been healthy during the past few flu seasons too, and i have kids in elementary school!) I called my neuro to tell her about my shingles because my mother saw something online saying that Tec "caused" shingles. I don't know about that, but I can certainly see that it might make me more susceptible since its an immune suppressant. Anyway my neuro's nurse assistant told me to stop taking Tec until the shingles was gone. They are going to put me back on a starter pack of Tec soon. I am curious as to whether my WBC is low and thinking I should ask to have it checked. I certainly don't want to go off Tec. Let us know what you learn at your appointment. Hope it goes well!

[WAshingtongirl in reply to Klclippert]

Klclippert, I understand shingles are very painful. I hope you are feeling better.

[littleshelley]

Hi Klclippert! I went to my neurologist yesterday and apparently what he is concerned about my absolute lymphocytes. And they are fine. I also get the flu shot every year and got the shingles shot when I turned 50. (I know too many people who have gotten shingles and don't want to experience that!)

Good luck to you and let's hope tecfidera keeps working for us all!

[littleshelley]

Good morning everyone! I just wanted to give you an update on my appointment with my neurologist yesterday. Apparently, I need to be worried about my absolute lymphocyte count not just the wbc's. And that was just fine. He said that the internists would just look at the white blood cell count but he was not at all concerned. That was really good news to me. Keep on tecfidera! And he was incensed that my disability insurance still was fighting me about paying. He said he was going to make sure that they give me what I deserve , mainly my payments! Just another fight I've been fighting. Keep your fingers crossed for me, back to work on Monday.

Thank you all for becoming a wonderful place for me to come! Make this a good day!!!

[Jesmcd2 CommunityAmbassador in reply to littleshelley]

Congrats littleshelley glad things are looking good for you

[Kevin_McMillan in reply to Jesmcd2]

Yes!! Me too!😊

[WAshingtongirl in reply to littleshelley]

Good news from your neuro. Praying all works out soon with your disability insurance paperwork.

[Kevin_McMillan]

Good news littleshelley, I forgot about my lymphocytes being low too. It has been awhile so I forgot (everything) some of the important stuff! I have been fighting the corrupt Social Security system for 6 years now, appeals are a waste! The the ALJ'S do not look at the file they side with the crook at my local office who lost my paperwork (threw it away) 3 times, kept losing my file, losing documents they gave me 9 days to send in and leaving on vacation with nobody to fill in! I had to get senator merkely involved to get my hearing but not a huge help!

[littleshelley in reply to Kevin_McMillan]

Ugh! I thought my fight was bad. Yours sounds like a nightmare. I haven't gotten to that point and I know how lucky I am. Keep up the good fight!