[Kitty]

I went to see my new Neurologist at The Shepherd Spinal Center in Atlanta. This was my second visit with him and he was going to get me started on Gilenya.

He brought out my blood test results from my previous appointment and said that my white blood count was low. Very low. He said it was from me being on Tecfidera the previous year.

Then he said something that shocked me. He said that symptom had become a real problem with Tecfidera and he had taken all of his patients that were on it off of it immediately. I was speechless. He then said hadn't I noticed the over abundance of commercials for Tecfidera lately. I had noticed it but just chalked it up to greedy Big Pharma. He said that's exactly what it is.....they're pushing to get the med out there. He said that most if not all of his patients had a decrease in their white blood cell count and even the ones that had not experienced it yet he wanted them off the med. I asked him if the company that manufactures Tec (Biogen) knew about this and he shook his head yes and just rolled his eyes. Apparently they know about it and have not yet put out a warning! What??!!

Anyway, I am still taking nothing until my white blood cell count increases.

I did find this warning in the side effect section of Tecfidera's website:

TECFIDERA may cause serious side effects including allergic reactions, PML, which is a rare brain infection that usually leads to death or severe disability, and decreases in your white blood cell count. Your doctor may check your white blood cell count before you take TECFIDERA and from time to time during treatment.

[NurseNancy]

i think there needs to be a law that if there are reported complications with a medication and/or say, a medical device....that by LAW the company must come clean to PATIENTS, not just drs.

i think it's too easy for companies to sweep problems under the rug and it's the people who suffer and are put at risk. ie: IVC filters, airbags, medications.

[Kitty]

He said that I'd notice less Tecfidera commercials in the coming months. I'd love to know what my old Neuro thinks about this. He was the one pushing Tec so strongly and why I started taking it again after I had initially stopped. I had had a severe reaction to it and he poo-pooed my concerns. I'm glad I no longer see him.

[TXBatman]

Not to be argumentative, but what exactly are they sweeping under the rug? I just went to look at their website, and I couldn't miss the possibility of white blood count changes as a possible side effect if I wanted to. It was quite literally either listed on every page, or appeared as part of a pop-up with each page I opened. All medicines have side effects, and this is one that occurs with Tecfidera, and which doctors are going to be regularly testing for. I am on Rebif, and they routinely test my liver enzymes and blood counts due to potential side effects it can cause. The OPs doctor may be wise to be taking his patients off the med...who knows...but I can't see how the drug company can be seen to be hiding this, as it is all over their literature.

[Kitty]

Originally Posted by TXBatman

Not to be argumentative, but what exactly are they sweeping under the rug? I just went to look at their website, and I couldn't miss the possibility of white blood count changes as a possible side effect if I wanted to. It was quite literally either listed on every page, or appeared as part of a pop-up with each page I opened. All medicines have side effects, and this is one that occurs with Tecfidera, and which doctors are going to be regularly testing for. I am on Rebif, and they routinely test my liver enzymes and blood counts due to potential side effects it can cause. The OPs doctor may be wise to be taking his patients off the med...who knows...but I can't see how the drug company can be seen to be hiding this, as it is all over their literature.

Sorry it took me so long to respond. I'm taking care of a very sick kitty cat and all my time and attention has been on him.

I agree....I found lots of warnings throughout their website. I'm guessing that he must be privy to some sort of information that
he wouldn't/couldn't share with me? I do plan to ask very detailed questions when I go back in May. Once I find out the reasoning behind it I'll post it here.

[Starznight]

The Doctor may be referencing the occurrences of patients with low WBC if the majority of patients are experiencing the problem on the medication, but the drug companies list it as "potential" and try to downplay the odds of patients suffering from the side-effect. Wherein it no longer becomes a potential side-effect, but more of an absolute side-effect like 80% or more patients taking the medication have the side-effect.

[Jules A]

Agranulocytosis is something than can happen with many medications . It is very serious because it can be deadly however there are times when risk vs benefits are considered and the outcome is strict monitoring.

Clozaril is an excellent example. It is a very effective antipsychotic medication with a risk of agranulocytosis so it is mandated that the patient is tested weekly, then monthly to monitor. Pharmacies won't even fill the medication if they haven't verified the patients blood work. It is so effective in fact that there are instances where additional medications to increase the wbcs are added in an effort to keep the patient on Clozaril.

The other thing to consider is there are variants to wbc levels. With benign ethnic neutropenia people have natural, harmless low levels that should be considered when interpreting labs.

Bottom line for me: Its definitely something to be aware of and monitor but not necessarily a need to call 911 just yet.