Looks like I'll be saying goodbye to Tec!

[MS TOO]

I've been on Tec for 14 months now after 6 years on Copaxone. Boy was it nice to give up the daily shots! The Tec flushing only lasted a couple of days and then it seemed fine, until I started having my blood work done to see how things were going.

My White Blood Cell count was consistently lower each time and my last two tests showed my WBC count to be below the low end of the normal range. My neuro warned me to get in to be seen ASAP if I got sick or ran a fever. I am now feeling lousy with a bad cold and the thought of my immune system not being able to fight off a cold or infection is really causing me some concern.

I am heading back for lab work again on Monday and my GP if I am still fighting this cold. I didn't refill my Tec Rx this month as I have a feeling that my WBC count is going to be even lower this time. So, it looks like I'll be going back on copaxone as my Neuro wants me to continue on a DMDs even though he now considers me Secondary Progressive due to the weakness on my left side and the fact that I don't do well at all in the heat. Actually it doesn't even need to be that hot only warm and I start limping like crazy and dragging my left foot around.

So best of luck to the rest of you, I hope you can continue taking Tec but please make sure you get your labs done to make sure something else isn't being affected by this med.

[bree2013]

Me too...

MS TOO,

I'm sorry you'll have to quit Tec because of your declining WBC.

I was going to create a thread of my own and then read yours. I started Tec June 2013 - like you 14 months. Coincidentally, my WBC is extremely low also - 1.9; lymphs also low but I can't remember the number. My neuro wants to do weekly CBC counts -- I don't know the magical number that will get me off Tec. My Primary doc ordered the CBC as part of a routine physical and she called me with the results. She contacted by neuro and he gave her the game plan, but I don't think he told her what the bottom line number will be.

To say that I'm really bummed about this is an understatement. I have no idea what I'll do if I can't take Tec. This is my first line of treatment and overall I've been feeling pretty good. I'm wondering if maybe the neuro will want to have me try alternating half doses (one day 2x, next day 1x, etc) Don't know.

You mention you have a cold right now - take care of yourself especially if your cold lingers and/or you get a fever.

Please keep us posted as I will also. We all learn so much from this forum.

Take care,
Bree

[J-Bo]

Mine is down to 2.7, which I guess isn't extreme, but I want to get a hip replacement early in October. I'm worried about having major surgery, or even just being in the hospital with all the scary bugs there without having a strong immune system. My MS doc now has me on the alternating dose that bree mentioned.

[KateM]

:-(

MS TOO,

That is such a serious bummer! So much negative news to deal with. A med you are tolerating is no longer an option, the low WBC, a cold, and the transition to secondary progressive. My thoughts are with you! I know the daily copaxone shots are a pain (literally) but at least you won't have to worry about your immune system.

Bree - weekly WBC. Wow, thats alot! Talk about booking up your schedule. What frequncy was your blood work initially done, and how long before your WBC started dropping?

I am glad you both have good communication with your doctors. To date, my only communication with my current neuro has been through her NP who has since left the practice, phone calls with the receptionist/nurse and an email. Makes me feel a bit neglected.

Best wishes to you both!

[bree2013]

Mine is down to 2.7, which I guess isn't extreme, but I want to get a hip replacement early in October. I'm worried about having major surgery, or even just being in the hospital with all the scary bugs there without having a strong immune system. My MS doc now has me on the alternating dose that bree mentioned.

J-Bo,

So you're doing an alternating dose... thanks for mentioning that. My doctor hasn't mentioned it but I was trying to think of some way to possibly stay on Tec and not have the WBCs decrease to an unacceptable level where I'd have to stop Tec -- yet still allowing Tec to be effective. I will definitely mention this option if my WBC continues to decline.

Good luck with the alternating dose and please keep us posted.

Bree

[bree2013]

Bree - weekly WBC. Wow, thats alot! Talk about booking up your schedule. What frequncy was your blood work initially done, and how long before your WBC started dropping?

Hi KateM,

I had a WBC done two months after starting TEC and one at the 6 month mark that was around 3.5 (?). Pre Tec was 4.9

To date, my only communication with my current neuro has been through her NP who has since left the practice, phone calls with the receptionist/nurse and an email. Makes me feel a bit neglected.

I was able to get this current WBC as part of bloodwork for a physical with a new primary doc. My neuro only ordered a brain MRI at my year mark - no spine or bloodwork.

I'm assuming the weekly draws will be temporary. Perhaps a few weekly checks to see if there's any change and if I continue on tec, then maybe every couple weeks; then every month, etc.

You mention you don't have good communication with your neuro / office -- I hope when / if you have serious issues that they come through. I haven't been in this MS game too long and I'm already tired of trying to figure out what issues I need to be persistent about and those that aren't worth it.

Good luck to you,
Bree

[bree2013]

Not as low as I thought...

Well, I received my results via mail today. I misunderstood the doctor when she called with the results. My WBC is 2.6 (still low but not as low as 1.9) and my lymphs are .34

MS TOO: You mentioned you were going in today for labs and possibly to see your doc. Is it possible your doc will let you stay on Tec? Did you see J-Bo's post about alternating doses: taking tec 2x/day; 1x, 2x, etc.? This sounds like a good way to minimally lower the dose and hopefully do less damage to the WBCs. As long as it's still effective - no flares, etc.

KateM: I hope you do well with tec.

Bree

[MS TOO]

Good News Today!

Tec update; since I had caught such a bad cold. I've been taking mega vitamin C and zinc dosages. I don't know if that made any difference but my WBC went from 3 up to 5.1! I was sure it would trend down again.

After emailing my Neuro, he was also pleasantly surprised and wants me to stay on Tec with another WBC check in 30 days. At least one more month of no shots, yippee!

[bree2013]

Congratulations MS TOO! So glad your WBC is not only up but within normal range. Good luck this next month.

Bree

[bree2013]

The last two weeks my WBC has steadily increased -- Woo Hoo! My doc wants me to get rechecked now in two weeks. I'm thinking perhaps my WBC went so low because maybe I was fighting off a virus or something and didn't even realize it. I was feeling a bit run down but didn't give it a second thought.

So I'll be staying on Tec for now.

Good luck to all of us -- whether taking a DMD or not!

Bree

[KateM]

Wonderful New!

MS TOO & Bree,

Congratulations to you both! How awesome to both get such great news. You give me hope that my blood tests will be good also. Perhaps some of your good ju-ju will rub off my way. So far I've been lucky not to have any major issues with Tec side effects and would like to stay with it.

[J-Bo]

Glad to hear people have some good news. My WBC is even lower this time since I've been taking less Tecfidera. Oh well.

If I have to go off of it, I won't be too upset. In the 5 or 6 months since I've been on it, my legs have gotten noticeably weaker, so I can only think it's not doing anything to protect me from the ravages of MS. Time to try something else maybe.

[grammy2many]

MS TOO

Just wondering if you attribute your WBC turn-around to the Vitamin C and Zinc addition? What dosage?

Do you continue to take the C and Zinc to maintain the improved blood count.

I had to go off Tec due to decreased platelet count. I don't know if this is different from WBC or not. If there is anyone more informed on this than I, please let me know.

I'm actually doing ok w/o the Tec and he did prescribe LDN, which I'll start after I have my knee replacement in sept.

[bree2013]

Glad to hear people have some good news. My WBC is even lower this time since I've been taking less Tecfidera. Oh well.

If I have to go off of it, I won't be too upset. In the 5 or 6 months since I've been on it, my legs have gotten noticeably weaker, so I can only think it's not doing anything to protect me from the ravages of MS. Time to try something else maybe.

Hi J-Bo,

I know someone at work who is PPMS and she's taking methotrexate (8 tab/wk) and she's also on Ampyra. She's been on this regimen for a while.

I remember reading a post here about someone who started methotrexate -- but she had to be off of her DMD for a certain amount of time before starting.

If you have to stop tec, I hope you're able to find something that works for you.

Good luck and let us know how it goes.

Bree

[J-Bo]

Thanks for the info!

First, thanks bree for your suggestion. I'd happily go bald if it would keep me from getting worse, but the thing I'd worry about with Methotrexate is that I already have wicked bad peripheral neuropathy, and I think it might make that worse--it's a chemo med, right? Or maybe I have it mixed up with something else.

Update on the Tec: neuro said to cut back to just one a day and run the blood work again in three weeks. I dunno, I'm skeptical about this plan. I think I should just stop taking it altogether, get my hip replacement, then regroup on the whole DMD idea after that. But that would cut off someone's revenue stream. Like Lily Tomlin said, "No matter how cynical you become, it's never enough to keep up."