8 Months

[nynick]

Hi all, just a quick update as to my MRI results after 8 months on Tec. Got them back on Thursday and everything was stable. No new lesions, no active inflammation. Was very relieved to get the results and am keeping my fingers crossed that the drug will keep working for me.

Regarding blood cell count, gave blood on Thursday and haven't heard yet as to where my numbers are at. Will post a quick update once I know. I imagine they would have called me right away if it was low so hopefully it's a good sign that they haven't.

Side effects thus far have not included much in the way of flushing, GI issues or fatigue. Have occasional things that I notice here and there but it's hard to say if it's attributable to the Tec. Oddly, I felt as though I noticed them more after around 5 months, which is obviously counter to the prevailing logic that it takes about 1-2 months to get used to the drug.

Anyways, happy holidays and all my best to my fellow MSers out there.

[JamCakes]

Hi Nick, that is good news about your MRI! I can relate to the relief and happiness of having a clean MRI. I am always relieved. I have had 9 MRIs now since that initial devastating one in 2005 when I was diagnosed, and every single MRI since has shown no new signs of disease.

I have had symptoms and minor flares, involving periods of fatigue, migraines, weakness and weirdness, but no new lesions on brain or spine.

I was on rebif and now tec for over a year. I have hope and I hope the same for you!

[Marco]

Great news, and at the perfect time of year. Thank you for sharing your story. I hope you continue to do well on Tecfidera. I wish you well ...

[REG53]

nynick--That is wonderful news! Glad you are doing well.

[nynick]

Thanks Marco, Jam and REG.

As an update, lymphocyte count according to my doctor was 2.1 or 2100, down from 2.4 or 2400 when I started 8 months ago and well within the normal range. I had a sinus infection when I started on the drug so I suppose they could have been initially elevated due to that.

My doctor says based on the recent developments with Tec they've set a lymphocyte cutoff of 500 (i.e. when they will stop treatment with that drug). Will need to clarify if that's a number they're stopping Tec at once hit or if a patient needs to be below the number for a certain period of time.

[Marco]

My doctor says based on the recent developments with Tec they've set a lymphocyte cutoff of 500 (i.e. when they will stop treatment with that drug). Will need to clarify if that's a number they're stopping Tec at once hit or if a patient needs to be below the number for a certain period of time.

I believe once you hit .500, they will monitor you for up to 6 total months. If your lymphocytes do not go rise, a modified treatment regimen may be attempted. This could include dropping back to the 120 mg starter dose, or taking a break from therapy until lymphocytes bounce back. Obviously, your neurologist can alter the time frames based on your wishes. Discontinuing therapy outright is also another option.

• In the MS placebo controlled trials, mean lymphocyte counts decreased by approximately 30% during the first year of Tecfidera, and then remained stable.
  
• Despite the reduction in lymphocytes, there was almost no difference in the rate of infections or serious infections between patients on Tecfidera versus placebo.
  
• Six percent (6%) of Tecfidera patients experienced lymphocyte counts below 0.5 x109/L. The lower limit of normal is 0.91x109/L.
  
• In clinical trials, 2% of patients experienced lymphocyte counts <0.5 x 109 /L for at least six months.
  
• The one Tecfidera patient had lymphocytes below 0.5 x109/L for 3.5 years, and remained on therapy.

I hope that you will continue to update us on your situation.