Looks like I'll be saying goodbye to Tec!

[MS TOO]

grammy2many, I'm not sure if the vitamin C (500 mg) and zinc (30 mg) did the trick but I am still taking it just to be safe. While I've been able to beat off the cold it looks like it turned into atypical pneumonia in my wife. She is now on azithromycin. It seems it is always something lately!

I just hope we both feel better at the end of September as we are meeting our daughter and dear grand daughter in Disneyland, happy birthday to me!

[bree2013]

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."

J-Bo,

Methotrexate is used for certain cancers, but as quoted from MedlinePlus on-line:
"Methotrexate is also sometimes used to treat Crohn's disease (condition in which the immune system attacks the lining of the digestive tract, causing pain, diarrhea, weight loss and fever), multiple sclerosis (MS; condition in which the immune system attacks the nerves, causing weakness, numbness, loss of muscle coordination, and problems with vision, speech, and bladder control), and other autoimmune diseases (conditions that develop when the immune system attacks healthy cells in the body by mistake). Ask your doctor about the risks of using this medication for your condition."

Personally I don't know anything about this drug and if it would worsen your peripheral neuropathy. I can state though, that my friend at work has been on it for quite a while and far as I can tell she's not having major hair loss. She did recently find out that not only has it helped her MS but that she has RA also -- and this has been helping that also.

You're in a difficult position. Because of your blood counts, it's understandable you wanting to stay off a DMD until after your surgery and then maybe decide on one But then again, if your counts are good with one a day then perhaps that's better than none? I don't know.

Good luck in your decision making process. I hope your next blood work is acceptable.

Bree

[J-Bo]

Thanks again for sharing your thoughts bree. I honestly don't know what's best to do. Maybe I should just listen to my doctor. That would be new and different strategy for me.

[Roamerwithroots]

I just found this thread after getting my blood work done a couple of weeks ago. My WBC count is down to 2.7 (from 5.0 in March). My neuro has suggested that if my re-test (which I'm waiting for the results on) is still this low, I may have to stop the med. I'm going to ask about an alternating dose. I have a history of a low WBC count even before starting Tec (but the lowest was 3.1 before). I rarely get sick though (knock on wood). I am not interested in any other med...I'm hoping there is a solution here other than quitting Tec altogether.

[bree2013]

Roamerwithroots,


How are your counts? Are you able to stay on tec? I'm being monitored monthly now but my lymphocytes are low (can't think of last count) -- I believe around 600?? My WBC's fluctuate but I think the lymphs are probably more of a concern.

Don't know what I'll switch to if I have to change meds. Getting cervical and lumbar MRI's this evening. Been over a year since last done -- will be interesting to get results. If things haven't changed too much, it'll be really hard to take something other than tec.

We shall see.

Please let us know how you're doing with your counts and if you're taking something different or perhaps on a different dosing schedule.

Bree

[GooGooGirl]

Hi,

I came home tonight to a letter from my neuro telling me that he is concerned:


Another patient has died that was on Tecfidera for 4.5 years. The patient was JC Positive and died from PML. He enclosed 2 scripts for me to get my blood counts done, said Biogen will pay. Hr is concerned since I tested positive for JC. Says we will need to discuss future meds.. What makes this more complicated for me is I am also A-fib and this leaves many of the other meds out for me. I was on Copaxone for 7.5 years. I won't go back. I would rather take my chances doing nothing I think. I'm so depressed right now. Pity party for one please......

[MS TOO]

Hello GooGooGirl,

I just read the article on the death of this one individual and they had a low WBC count for 3 1/2 years of the 4 1/2 years that they were taking Tec. I'm getting my WBC count checked every 60 days now and I wouldn't go 6 months with a low WBC let alone 3 1/2 years.

Hopefully your labs look better this time. It's great that you have a neuro that is staying up to date as the article is very recent. Best of luck to us!

[ireneg]

Goodby to Tecfidera

My leucocyte count has been fluctuating and now is consistently going south. I have experienced flushing every single day since I started on Tecfidera. I have an appointment with my neurologist next month to discuss treatment options. I have no problem with giving myself shots. I am not excited about three times a week compared to every day. Every day shots are easier to remember. My problem with the disease modifying drugs is that I can't tell what good they are doing. I was not diagnosed until I was 66. No MRI change in the five years since then. Some decreased mobility. Still walking. Trying to get up to date with the latest therapies so I can make an informed decision. Or a somewhat informed decision.

[goblue]

Here is an excellant article regarding tec and lymphocyte counts. http://www.slideshare.net/mobile/gav...1oct2014-final

[bree2013]

grammy2many, I'm not sure if the vitamin C (500 mg) and zinc (30 mg) did the trick but I am still taking it just to be safe.

MS TOO - I read in another post that your counts went up - Great! Are you still taking Vit C - 500mg & Zinc - 30mg?

Roamerwithroots & GooGooGirl - How have your followup blood works looked? Are you able to stay on Tec, even if altered dosing?

Ireneg, you mention you were going to discuss options with your doc. For what it's worth, and I don't know anyone else's history, sx's, etc - but I have maintained a somewhat low lymph count - hovering lately between 600 - 650. I had MRI's recently and everything was stable. I feel Tec is working well for me and hope I can continue. My doc wants to recheck counts in 3 months. In the mean time I will take extra Vit C & Zinc since it appears to have helped others elevate their counts.

Good luck everyone. If Tec is something you cannot stay on, it's nice that there are other options - hopefully something for everyone.

Be well,
Bree

[MS TOO]

Hello Bree,
I had backed off the vitamin C and zinc but am taking them again now. I'm hoping it helps my numbers go back up.

Then in May I'll have an MRI at the two year Tec mark, if it looks like it's working, then I guess I'll be getting regular lab work for a while and hope for the best!

[Roamerwithroots]

Sorry for the late response!

I quit taking Tec. My neuro said he did not believe that taking an alternating dose would be of any value. He wanted me to start on another medication, but I am currently not taking anything. I decided to take 6 months off and see what I feel like in the spring at my next appointment. I'll have my blood drawn again before that appointment.

Honestly, I feel much better than I did taking the Tec. I really feel like it contributed to my mental cloudiness and exhaustion and depression. Because I had no MS symptoms for 6 years, I felt safer taking a break. I don't know what I will do come spring time. I may just wait and see after the next annual MRI.

[Deela]

No more Tec for me either

I recently stopped taking Tec after only being it for 17 days. During the first week, I noticed shortness of breath but chalked it up to being out of shape. By the start of the third week, I started getting heart palpitations.

Everything came to a head 17 days into taking Tec. I ended up in the ER with consistent palpitations and shortness of breath. After six hours and many tests, scans and X-rays all returning normal results, I was released and told to follow up with my GP and neuro.

My neuro told me to stop Tec immediately. That was over a week ago and with each passing day I feel better. The neuro said I was the first patient he has had with this type of side effect (and he is at an MS center in a big teaching hospital).

So now I am taking a month off from meds. I was on Avonex for 2.5 years with no real issues. Neuro is recommending Copaxone. Just need some time to think about what I want to do for treatment.

Hope this info will help anyone suffering from symptoms not listed as side effects.

[MS TOO]

Deela,

Glad to hear you are feeling better, I can only imagine how tough it was to suffer through such bad heart palpitations. I know I just get heartburn and I start to worry that I 'm having a heart attack.

My last labs once again showed my white blood cell count below normal, the number is going up and down each month. We'll see what happens next month. I've been on Tec for 18 months now after almost 6 years on Copaxone. The daily shot wasn't fun but it wasn't that bad either. The good thing was the copaxone worked and my blood work was always good.

In May I'll have an MRI to see how things are going. I'm hoping I'll be able to continue with Tec but if not I won't hesitate to start back on copaxone.

Best of luck to you in the new year!

[MS TOO]

White Blood Cell count was back up in the normal range this week. I can't explain what is going on, this medication seems to do some strange things to us but if it's slowing the MonSter down some, then I think it is worth it. I hope so anyway!