TECFIDERA AND LOW LYMPHOCYTES

[HereIam]

At a meeting with my neuro yesterday he suggested trying Tec. even though I have SPMS. At his Center they have some anecdotal reports of people with SPMS enjoying some benefit, so why not try. I agreed.

That was until yesterday's bloodwork came in. My Lymphocytes (manual) are 8, with the lowest normal value being 18. That's that as far as I'm concerned, as Tec has not been studied in those with low Lymphocytes. And, since it drops Lymph.... well, I'm not a gambling girl.

Other of my blood values are all over the place, and I don't know if that's going to be sending me on a journey or not. One journey I know I won't be on is taking Tecfidera.

[MSer102]

There was just a whole discussion about low lymphocytes under the thread about PML happening in patients who took fumarate medicines for psoriasis.

[durgastiger]

@ Here I Am

So your WBC were low even before you started taking Tecfidera?

What med are you taking now?

Tecfidera is more of a modulator/regulator then something like Tysabri which knocks off your WBC.

[mlissa67]

Me too...

My WBCs and Neutrophils were both unexpectedly low. I'll be sticking with my IVIG. If its already low and taking Tec. can make it lower, no thank you.

[HereIam]

No, I am not on Tec. now. This blood work was done in anticipation of starting. I am on no DMDs now because I have Secondary Progressive and the DMDs have made no difference in my progression and I've tried them all.

My WBC is high, my Lymps are low, my Neutrophils are high... and other abnormalities. Not slightly off, very off, as in the Lymphocytes being half the lowest normal range.

Mlissa, no doctor has ever suggested IVIG for me, I'm not sure why not. There's a couple of treatments that have not tried, and IVIG is one of them.

I'll wait and see what the neuro advises.

[durgastiger]

Hi hereiam

are you jc+ ?
Have you thought about going on a trial. There are a lot of ppms and secondary trials happening right now.

Check out the treatments and trial thread.

[mlissa67]

IVIG is not an approved tx for MS per we, but there are those who swear by it.

I started with Copaxone which caused migraine headaches, next was Tysabri and then I turned up JCV + after 9 treatments, then Rebif, made me so sick I couldn't get out of bed even with all the premeds to prevent flu like sx's. This past December was Avonex, I had to be hospitalized on Xmas day for a severe reaction. Gilenya is out because of my history of macular edema and aubagio causes elevated liver enzymes which I already have.

I started IVIG pending the release of Tecfidera and well, with low WBCs and low neutrophils that's out now as well. So I'm happily back on my 4 day/mo. IVIG, no side effects except a headache that goes away.

[HereIam]

I am JC +, which precludes me from a lot of the trials they have going on.

[Torn]

I too had low lymphocytes prior to starting techfidera. Nuero decided to try me at lower dose (120) and see how it effects me. Now I'm a little nervous after reading this post. Am I at risk for pml more than everyone else? I don't have another option for dmd right now. Need something because I've had flare up every three months this past year.