Tecfidera

[kathy5500]

I have been on Tecfidera since 2012. My white count is too low so the doctor is having me hold the Tecfidera for a month and then have my white cell count retested. Anyone else have that problem? Thanks!

[dragon777111]

Hi Kathy. I too had that problem. I was doing well with Tecfidera when my white blood cell count went very low. My doc took me off immediately but can't put me on another medication due to my other health problems.

[kathy5500 in reply to dragon777111]

You are not on anything now? Before this happened he talked about changing to Ocrelizumab when it is available. Wondering if that would be option for you. Can you tell any difference with your MS since being off Tecfidera? Thanks.

[dragon777111 in reply to kathy5500]

I was on copaxone before tecfifera but had to get off that too. Tecfidera had the least amount of side effects and didn't interact with all the other meds I'm on. I have heart problems which prevents me from using all the other current medications since they all have side effects that affect the heart. My doc did mention there is a new drug coming out he may try to put me on but I don't remember the name.

[bavery207]

I have not taken Tecfidera but a woman in my MS support group had the same problem while on the same drug. She had been thinking about stopping her med. for awhile before this happened. When her white count was low her Dr. cut her dosage in half to see if her blood work would bounce back. I have not seen her yet to hear if things improved. But at last report she was anxious to get back to the full dose of Tecfidera as she was feeling lousy.

[kathy5500]

Never thought about cutting the dosage--maybe that is what he will have me do, if the count goes up after a month. Thanks for the information.

[LISAANNE0309]

Hi Kathy, 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. So, I have not been on any DMT since August 2014. I was diagnosed 25 years ago with RRMS which eventually evolved to SPMS. I can walk a bit, but use a power wheelchair most of the time. The MS stopped progressing almost 6 years ago when I start Vitamin D supplementation. My miracle drug.

[dhammes in reply to LISAANNE0309]

I agree with the vitamin D3 working wonders

[kathy5500]

Oh, I am so glad Vitamin D is helping you. My MS continues to progress but my neurologist says we have to have faith that things would progress quicker without the DMT. Guess I will find out over the next month. Maybe in the long run this will work to my advantage and I will find something else that will help. Thanks.

[dhammes]

My white cell count dropped and my Dr. cut my dosage to once a day can't say i'ts helped my count is still low, I'm thinking I may go to Avonex at least it is only one shot a week. Can't do Aubagio I test positive for TB.

[kathy5500]

Know anything about Ocrelizumab?